50 Shades of Gluten (Intolerance)

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Celiac disease (CD) was initially described in the first century A.D. by a Greek physician named Aretaeus of Cappadocia. (1) But neither Aretaeus nor anyone else knew that CD is caused by an autoimmune reaction to gluten, a protein in wheat. That didn’t become clear until 1950 — several centuries later — when Dr. Willem Dicke, a Dutch pediatrician, conclusively proved that gluten was the culprit. (2) Dicke’s discovery saved millions of children and adults from the perils of untreated celiac disease, including malnutrition, stunted growth, cancer, severe neurological and psychiatric illness and even death.

Since then, the mainstream view of gluten intolerance has been relatively black or white: Either you have celiac disease, in which case even a small amount of gluten will send you running to the bathroom in three seconds flat, or you don’t, and you can chug down beer and bagels without fear. This “all-or-nothing” view has led to some doctors telling patients that suspect they’re sensitive to gluten but test negative for CD that they’re simply imagining an affliction that doesn’t exist.

It turns out those doctors are wrong.

The Many Shades of Gluten Intolerance

In order to explain why, I have to give you a quick lesson in the biochemistry of wheat and wheat digestion.

Wheat contains several different classes of proteins. Gliadins and glutenins are the two main components of the gluten fraction of the wheat seed. (They’re essential for giving bread the ability to rise properly during baking.) Within the gliadin class, there are four different epitopes (i.e. types): alpha-, beta-, gamma- and omega-gliadin. Wheat also contains agglutinins (proteins that bind to sugar) and prodynorphins (proteins involved with cellular communication). Once wheat is consumed, enzymes in the digestive tract called tissue transglutaminases (tTG) help to break down the wheat compound. In this process, additional proteins are formed, including deamidated gliadin and gliadorphins (aka gluteomorphins).

Here’s the crucial thing to understand: Celiac disease is characterized by an immune response to a specific epitope of gliadin (alpha-gliadin) and a specific type of transglutaminase (tTG-2). But we now know that people can (and do) react to several other components of wheat and gluten — including other epitopes of gliadin (beta, gamma, omega), glutenin, WGA and deamidated gliadin — as well as other types of transglutaminase, including type 3 (primarily found in the skin) and type 6 (primarily found in the brain). (345678)

This is a huge problem because conventional lab testing for CD and of gluten intolerance only screens for antibodies to alpha-gliadin and transglutaminase-2. If you’re reacting to any other fractions of the wheat protein (e.g., beta-gliadin, gamma-gliadin or omega-gliadin), or any other types of transglutaminase (e.g., type 3 or type 6), you’ll test negative for CD and gluten intolerance no matter how severely you’re reacting to wheat.

Beyond Celiac: Why CD Is Just the Tip of the Iceberg

Official statistics suggest that Celiac disease affects between 0.7 percent and 1 percent of the U.S. population. (9) But considering the limited scope of the testing, it’s possible that the actual incidence might be much higher.

In addition, CD is only the tip of the iceberg when it comes to gluten intolerance. Celiac disease is caused by a distinct autoimmune response to wheat proteins and transglutaminase enzymes in the gut. But CD is just one possible expression of gluten intolerance; there are many other ways that sensitivity to gluten can manifest in the body. These are collectively referred to as “Non-Celiac Gluten Sensitivity,” or NCGS.

There’s no consensus definition of NCGS yet, but the most common understanding is that it’s a reaction to gluten that is not autoimmune (like CD) or allergic (like wheat allergy). Another definition I’ve seen is, “a reaction to gluten that resolves when gluten is removed from the diet and CD and allergy have been ruled out.” (10)

It’s difficult to estimate the prevalence of NCGS because there is no definitive diagnostic test for it. As I mentioned above, the currently available tests for gluten sensitivity are primitive and only screen for a small fraction of the components of wheat that people react to. Another issue is the variety of symptoms caused by CD and NCGS. While most people assume that gluten intolerance always causes digestive distress, this is not the case. Almost 50 percent of new patients diagnosed with CD do not have gastrointestinal symptoms. (11) Moreover, for every one case of CD that is diagnosed, there are 6.4 cases that remain undiagnosed — the majority of which are atypical or silent forms without gastrointestinal symptoms. (12)

Gluten intolerance can affect nearly every tissue in the body, including the brain, skin, endocrine system, stomach, liver, blood vessels, smooth muscles and even the nucleus of cells. CD and NCGS are associated with an astonishing variety of diseases, from schizophrenia and epilepsy, to Type 1 diabetes and osteoporosis, to dermatitis and psoriasis, to Hashimoto’s hypothyroidism to peripheral neuropathy. (13) Because the range of symptoms associated with gluten intolerance is so broad and nonspecific (e.g., can be attributed to any number of conditions), many patients and doctors don’t suspect gluten may be the cause.

Even with these limitations, some estimates suggest NCGS may occur in as many as 1 in 20 Americans. (14) And while some mainstream medical professionals continue to insist that NCGS doesn’t exist, several studies have validated it as a distinct clinical condition — including gold-standard, double-blind, placebo-controlled trials. (15)

The Gluten-Free Challenge: Still the Best Test for Gluten Intolerance

With all of this in mind, the obvious question that arises is, “What’s the best way to test for gluten intolerance?” Because of the limitations of current laboratory testing I described above, most experts on gluten sensitivity agree that the only reliable test is a “gluten challenge.” This involves removing gluten from the diet completely for a period of at least 30 days, and then adding it back in after that. If symptoms improve during the elimination period, and return when gluten is reintroduced, a diagnosis of NCGS can be made.

However, for many people a gluten-free diet isn’t enough. Some grains that don’t contain gluten, such as corn, oats and rice, contain proteins that are similar enough in structure to gluten to elicit an immune response in people with CD or NCGS. In addition, about 50 percent of patients with CD show signs of intolerance to casein, the protein in milk. (16) This may explain why up to 30 percent of CD patients continue to have symptoms or clinical signs after adopting a gluten-free diet. (17) For this reason, I recommend a completely grain- and dairy-free diet during the gluten challenge period.

Finally, though the gluten challenge is still the gold standard test for gluten intolerance, there is a relatively new lab (Cyrex Laboratories) offering a comprehensive blood test which screens for all of the wheat and gluten proteins and transglutaminase enzymes I mentioned above. This can be a helpful diagnostic tool, but it should never replace a gluten/Paleo challenge. (Note: It must be ordered by a physician or health care practitioner.)

Now I’d like to hear from you. Do you suspect you may have gluten intolerance? If so, has removing gluten resolved your symptoms — or have you found it necessary to remove grains and dairy as well? If you haven’t tried a gluten challenge, what’s holding you back?

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Comments Join the Conversation

  1. GT says

    Last year my hair started falling out, along with scalp burning and tender spots/sores (but did not appear to be DH rash) on my scalp. I also had neurogenic itch in my arms and peripheral neuropathy. I got an intensive workup and found that I had Sjögren’s syndrome. I eventually did have the dry eye and mouth classic of that condition and got treatment. The itchy arms and painful scalp persisted, however. I got more testing done and found I was positive for deamidated gliadin peptide antibodies IGA, though the other celiac cascade tests were normal. Anyway, I started a strict gluten free diet and within2-3 weeks my scalp and itch problems stopped. I was truly amazed, as I had been to top dermatologists who had treated me with steroids to no avail. I plan to try to go grain and dairy free moving forward.

  2. Christine says

    About 6 years ago I decided to go diary free as I suffered from daily diarrhea. Now and again I think I can deal with eating cheese, but when I do I get headaches. Later I did an allergy test at a Chinese holistic healing center. It turned out I am highly intolerant for diary and intolerant for wheat. However I never went wheat free. I did replace it with Spelt which is an older species. Wheat has been ten times modified in the last 1000 years.
    When a friend went gluten free I thought; lets go wheat free.See what it does. I have depression as long as I can remember off and on. I had therapy but the depression returns for no reason. I’m often low on energy and have been on medication for anxiety. I also have pains in my hands and knees since I was about 18. Bloating is the norm.
    Last week I began the wheat free diet and it hasn’t been easy. I never knew you could get withdrawal symptoms. They are similar as when I weaned off the Citolopram (medication for anxiety/depression) I keep a diary of what I eat and how I do. I feel quite good today. But it is still early days.

  3. Laura says

    I’m not sure what I have to be honest. I think I’m gluten and dairy sensitive. Whey Protein shakes kill me so I’ve stopped them. My tummy is always bloated. I sometimes wake up with a flatter stomach but by 12 I have to unbutton my trouser. Other mornings I wake up in pain and my stomach/intestines constantly groan and make really loud noises! Wind, diarrhoea and constipation are always a problem. I went to the docs and CD test came back neg so of course he diagnosed me with IBS and gave me a leaflet. Tired all the time especially after eating and find it hard to get words out or remember things at time. I’m 29 and also very overweight although as active as I can be with wrecked knees and a torn rotator cuff and pain in my neck and top of spine.

    • Claudia Ponce says

      All of those are Gluten intolerance symptoms. I have them all and have been diagnosed with dermatitis herpetiforme too. You have to began a gluten free diet. I have known of people who has not ben diagnosed for this condition and have developed other illnessess as Hashimoto syndrome. When you stop eatiang gluten. You will soon began to feel better and will not need medication any more.

  4. Julie says

    Right, where to start?!
    Basically I’ve not really been able to eat white bread without getting tummy ache for as long as I can remember. I have never noticeably had a problem with brown/wholemeal bread until a month or so ago. It just so happened to be around the time I met a friend of a friend who is diagnosed gluten intolerant which got me thinking……..
    I have since done a LOT of reading and even though I don’t really have much in the way of GI symptoms I have a lot of other niggles. The thing is these other ‘symptoms’ all have apparent other explanations. So here goes…
    1. I’ve had insomnia since I was a teen and have been told my body clock is sensitive and tends towards being out of sync over time and I have sleeping tablets a couple of times a year to knock me back in sync.
    2. I suffer migraines occasionally, I usually associate this with a lack of sleep as sleeping is the only thing that either prevents an oncoming migraine or does anything to help when I have an attack. I have noticed though that I have had an increased number of migraines around the time I noticed brown bread made me ill.
    3. I am on antidepressants and have been for years. I was originally diagnosed with postnatal depression with my now 7 year old that I haven’t really shaken off. After counselling and CBT and different meds and doses the doctor has told me I have ‘depressive illness’ and am just prone to depression. I’m quite happy to take my pills forever if it keeps me straight.
    4. Itchy, dry scalp almost like cradle cap in babies that comes and goes as it pleases. Doctor said it is most likely caused by my antidepressants that make my scalp sensitive.
    5. Irregular (almost non existent) periods. I’ve had this for a long time too, I thought it was weight related and doc thinks I have cysts on my ovaries that could be causing this. I’ve had tests and scans and it’s not PCOS per-se but doc thinks that’s probs what’s up.
    6. Weight! I’m iver weight and have been since having my first child, losing weight is nigh on impossible. Again doc thinks my ovaries and hormones are to blame but didn’t go any further than that not tests or anything.
    7. Brain fog, I can’t find a definition of brain fog that doesn’t scream of me in a morning but I don’t sleep well so I just always put the two together.
    8. I had a test last year for deficiencies (I thought I was dying of breast cancer and it turns out I did too many press ups – shush!) that came back boarder line Vit D deficient. I’m ginger, apparently this is a big deal as I should be able to get vitamin D from sitting in a cupboard. Doc gave me supplements and sent me on my way no questions asked.

    As you can see there are lots of little things that have answers individually but put them together and I have a whole other diagnosis!
    I have cut gluten out best I can for about two weeks now and haven’t really seen much of a change and am thoroughly depressed that I’m not eating gluten containing food (think grown woman sobbing in the free from aisle in tesco!)
    I had some wheetabix this morning as a bit of a test and so far I’m just my usual tired self!
    I don’t know if I should just wait and see or if I should have some pasta or something for my tea?!
    I haven’t been to the docs and discussed any of this because I don’t want to go without anything more conclusive than “all this stuff could add up”
    I really really really don’t want to be unable to eat gluten but then will it fix everything else?! A couple of weeks has been horrifically difficult and depressing, I don’t know how you guys live like this, am I just being impatient?!
    Any advice gladly welcomed – even if it’s just to tell me I’m being paranoid go eat some toast :-) xxx

    • terri31 says

      You sound like me. Definitely try cutting out all gluten for at least three months. Also do some bipolar II tests online. If you find them positive ask your Doctor for an assessment. I had a crisis following getting hashimoto’s which i got under control with paleo plus autoimmune protocol. Gave up dairy, gluten, sugar. Felt great but fell by the wayside once the antibodies went down and symptoms stopped. But it triggered major BPII episode, depressed plus massively irritable and reckless. I finally got diagnosis and treatment. The brain fog I’d had for 10 years [with depression plus many symptoms of hypo which I was able to hide from others, stupid decisions, irritability which was unknown, all following introduction of antidepressants] lifted after 2 weeks of lamictal. I lost weight, had more energy, when I went up to 200mg I felt like me again, pre major depression 10 years ago. I was able to reduce antidepressants to nil after two years, think I need some now but have to make sure it’s one which is recommended for BP2, Good luck.

    • Alessio says

      Julie, it’s astounding, you have almost ALL the effects of gluten intolerance…it’s been correlated with all that you have, and when there are so many correlations it’s getting near causation. Depression, brain fog, etc…all..all.. and the excuses that teens have to be like that, you have to take drugs…but the truth is that human beings as all the other living beings ob earth don’t have to be sick, sickness is an exception in nature, not the rule. But the issue is not getting gluten free, is getting paleo…avoid not only gluten, but grains, dairy and any pricessed food and focus on the most nutritional dense ones. Good luck!

    • Claudia says

      July, I just wanted to tell you that going gluten freee is not that bad. You can still enjoy eating other options of bread and cakes. Many people in several countries do not eat white flour any more. White flour is not good for our health even if you are not gluten intolerant. Furthermore, when you stop eating what is killing you silently, you will begin to feel so good that you will never would like to go back to depression, anxiety, and all those symptoms that do not let you enjoy your life. People who is gluten intolerant have to stop the consumption of this protein in order to avoid to develop other bad diseases as diabetes, Hashimoto syndrom, etc. Good luck.

  5. Amanda says

    I think there’s an error here…you have .7 as the percentage of people that have celiac. I don’t know what the percentage is but last I heard it was .05. Maybe you meant .07?

  6. Mike says

    I also fogot to mention that my issues are always worse in warm wheather. It does’nt bother me as much in the winter.I have no idea why. Does anyone else?

    • Bud Kelly says

      Mike, don’t be in denial like I was. JUST CUT OUT ALL GLUTEN FOR A WEEK OR TWO. That will probably give you the answer. It is both diagnosis and treatment, and doesn’t cost you a cent.

      • Jon Neviaser says

        Great advice. Don’t procrastinate. Just do it. You have nothing to loose and a great quality of life and some additional years to gain.

    • Bud Kelly says

      Mike, why are you still whining about it? Get off the gluten for two weeks and you will have both diagnosis and treatment. Perhaps whining is another symptom of gluten intolerance???

  7. Mike says

    I started having problems in high school and i am now 59. They have steadily gotten worse. I don’t have so much problem with my GI tract, I just feel drugged and weak shortly after eating and want to lay down. I also suffer from brain fog, low energy, can’t concentrate and can hardly drag myself out of bed in the morning. Is this gluten? Does anyone else have this drugged sensation? Also my stool is very light in color.

    • Bud Kelly says

      Sounds just like what I have been through. Just keep all gluten out of your diet for a week. If you feel better, you have the diagnosis. Doctors are loathe to even recognize most cases of gluten intolerance, and the tests for it are still not very reliable. But you have the power to diagnose and treat yourself. But watch the fine print on labels because there’s gluten in almost every prepared food. Good luck, Bud

      • Alessio says

        Bud, by the way, being a veterinarian I hope you could share my disappointment about pet business, they are forced to eat a grain based diet like us, but since such diet is harmful for us, I’m shivering at the idea of a true carnivore eating like that, it wreaks such havoc upon their health.

        • Marcy says

          There are grain free pet foods. My cats eat duck and rice that I buy at petco. Initially it is expensive, but you will find that you need to feed them less and there is less waste to clean up.

          • Alessio says

            Actually rice is not for carnivores as well…they have to eat flesh and that’s all they need…they need to avoid not only grains, but any other form of carb

    • says

      For Mike: It sounds like ‘gluten sensitivity’ (that’s what I have), the brain fog in particular, BUT gluten sensitivity is often associated with low vitamins and minerals (your ability to absorb these seems to be lessened). The yellow stool sounds like very low iron (ferritin), which will also cause extreme tiredness. Try going non-gluten for two weeks and get your iron (and vitamins, particularly B12) checked as well.

    • says

      all disease begins in the digestive tract…a diet high in grains,processed food etc can gum up the digestive tract, cause leaky gut with leads to autoimmune disease and thyroid issues and many other symptoms…the only way to feel better is to heal the gut…remove parasites from the body , some people need enzymes and hydrochloric acid to help digest food …
      Whole food , no grains dairy , or sugar ..there is a lot of interesting info on this paleomom is good…I’m certainly not there yet but I feel better off grains …every time I eat bread ( organic sourdough) I get a scaly rash around the creases of my nose and eyebrows..
      Worm yourself and clean your colon..get good enzymes and bacteria back in and keep
      Eating like this for the rest of your life ..

  8. Jill says

    I’m looking for some feedback. I’m not sure if I have a gluten intolerance or not. I’ve only been to a few doctors lately but for about one full year now I have this chronic feeling of being achey or sick. It happens daily and multiple times during the day. When I experience this, I want to lay down but it doesn’t help. Nothing helps. It just comes and goes in waves. I also experience bloating EVERY time after I eat no matter how big or small the meal may be. I’m not sure if I need to go gluten free but this chronic feeling of being sick is driving me insane. Any suggestions?

    • Bud Kelly says

      Great article on gluten intolerance, very well worded!

      I want to give a shout out to anyone out there who even suspects that they might have gluten intolerance. Just try a gluten-free diet for a week or two. If that’s your problem, you will feel better right away, and it will improve for months.

      I am a veterinarian, very well versed in medicine, and my story is so dramatic that I would not believe it if it hadn’t happened to me. As soon as I quit gluten I got rid of my rhinitis, sinusitis, inability to sleep without my mouth open and drooling, muscle aches, fatigue, brain fog, and loss of balance. I was so depressed while eating gluten that I dragged myself through the day. Now I feel born again.

      Seriously, gluten intolerance is no joke. It might not kill you, but it will make your quality of life so poor that you will wish to die. Seriously.


      • Marcy says

        Bud, I agree, the quality of life is so much better. I still eat some products made with corn but I am considering cutting them out too. I am still having mal-absorption issues. Right now I am fighting low sodium along with a host of other auto immune issue.

      • Eda says

        Bud, when you stopped eating gluten, did you also cut something else (eg diary etc) ?
        Im curious, because Im just going to start this diet also, to test if Im gluten intolerant.

        Thanks for your answer and have a nice day,


  9. ach says

    I live in rural China (ecologist working in Science institute), I’ve been a vegetarian for most of the last 27 or so years, and have known I’m allergic to Chilli for a long time. More recently I’ve come to suspect I react to MSG, and that I may have IBS-as I can’t digest oily foods. However normally those oily foods have also had gluten in, and as gluten is not a big part of the diet here, and I seem to also have the same issues when I go west/eat in a western restaurant.
    Last night a friend baked bread, and I very quickly started feeling bloated, generally uncomfortable and slight nauseous; could it be IBS or gluten intolerance and is there an easy way of telling?
    Thinking back I used to get many more migraines/headaches/visual migraines and mouth ulcers, and even abscesses in the west-where access to bread (etc) was easy
    I live in a remote place, and already survive mainly on fruit and nuts, plus a small ration of imported cheese and crackers (try being a veggy in rural China when you can’t eat oil, chilli or MSG…..) so one thing I really don’t need is a gluten allergy, and yet I can’t put the symptoms (and the fact they flair up when I’m anywhere I can get hold of bread) down to anything else…..

  10. Sam says

    After reading some of these comments & from personal experience a lot of the discomfort foods are GMO and extremely processed. In my experience if I bake with wheat I’m fine. If I buy bread products I’m in distress. A huge part is that there are a lot of ingredients that should not be in bread that are on the market that reak havoc on our digestive system. I was googling GMO and the effects on animals & I found a study done in Europe that stated all of those symptoms in the animals on GMO feed (reproduction issues, bloody stool ect). So it may be worth it for you all to eat real un processed non GMO food and see if that helps. Dairy intolerance from pasteurized milk can also cause similar symptoms & vertually all processed foods have some form of dairy in them. I wish you all luck and health.

    • Alessio says

      Of course GMO and additives can only enworse any problem. However in ancient societies like Egypt and others people did already suffer from the disease of civilization. As soon as agriculture has been introduced, general health dropped down.
      Surely modern industrial food are thousands times more harmful.

  11. terri says

    I recovered from Hashimoto’s thyroiditis by going paleo, gluten free, dairy free and sugar free. I also took milk thistle [detox liver] siberian ginseng alternating with rhodiola rosea [adaptogens] – plus kefir, kombucha and 24 hour fermented yoghurt to rid the milk of lactose. Within 2 years the antibodies [Hashimoto’s and Graves] dropped from 800 to 200 and blood tests back to ‘normal’, symptoms alleviated.

  12. Jim says

    I have been gluten free for about three years now. I was never tested for CD. My issue with doing a gluten challenge is that when I am accidently glutened, I feel horrible for 4 days afterwards. Two days ago, I was at a restaurant and the waitress brought my meal with my wife’s dinner roll leaning on my dinner. I sent it back, as when I let something like that slide before, I have gotten sick. I could see the cook in the kitchen was obviously ticked that I had done that, and he was glaring at me like I was the worst person ever created. Guess what. One hour after I left the restaurant I was in distress. Yesterday were the worst symptoms I had ever had. Did he do it on purpose? We will never know. Judging by his reaction to my request, I’ll bet the contents of the crumb tray from the toaster ended up in my meal. My point is, my body could never tolerate a 30 day challenge in order to try to get a definitive biopsy.

  13. Hasan says

    I was diagnosed 3 years ago, after 6 months of battling with increasing diarrhoea. Bloodtests, both endomisium and gliadin antibodies showed positive and I went off gluten, a week or so later the symptoms decreased and disappeared. My endoscopy biopsy showed negative, however, but was done by a general surgeon other than a gastroenterelogist (couldnt afford a good hospital with a student financial sitch, plus Turkey isnt exactly a healthcare heaven) Now I will have to join the army in 7 weeks time, and need to prove I have coeliac so went on a gluten challenge. I am nervous that I might not have the illness at all, even though the antibodies were positive. I am on a gluten challenge for a week now, not a prominent symptom has occured yet. I wonder when do the sypmtoms come back, how long does it usually take to show positive on tests and what would the rate of me being coeliac: endomisium and gliadins positive but negative biopsy after 6 months of diarrhea and stops when gluten free. After all army on a gluten diet would suck :/

  14. Makenzie H. says

    I am currently pursuing Celiacs disease testing because I have been sick for about 2 months with a wide array of neurological, GI and systemic symptoms. I am a very healthy 21 year old college student who woke up one morning in January with muscle twitches throughout my body (and right eye), headaches and awful brain fog. I have seen multiple doctors who are pretty baffled by my symptoms and haven’t been able to give me a clear answer. I was initially diagnosed with Lymes disease and was treated with antibiotics for three weeks but never improved. I also received an MRI which was completely normal. After that I was tested for Lupus, thyroid issues, RA and other tic-born illnesses, all were negative and my blood chemistry and CBC was fine. I will be tested for Celiac’s Disease tomorrow and I just wanted to know if anyone has experienced substantial and unyielding neurological symptoms with Celiac’s. My main concern is the brain fog, which has been with me constantly for two months, even when I went off gluten for two weeks. I have experienced GI issues throughout my illness, alternating diarrhea and constipation with undigested food in my stools, however, that hasn’t been my primary symptom. I have also lost weight through this whole thing. For those of you who have gone off gluten, how long did it take for your symptoms to begin to subside? Does this sound like Celiacs or a gluten sensitivity?

    • Angelina says

      Mackenzie, I’m sorry you’re not feeling well. I don’t have any answers for you. Just wanted to write to let you know I am having the same experience. Weight loss. Brain fog. Headaches. Muscle ticks. I also just had some testing done that appears normal. I have eliminated gluten and caisin from my diet and plan to contine without them. It’s only been a couple weeks and I’m not noticing much of a difference yet but as I understand it, it can take months off of gluten for symptoms to reasolve. Best of luck!

  15. Isabella says

    My daughter was diagnosed with CD when she was 9 years old. She had stopped eating and she had lost weight. The doctor did a biopsy and said it was CD. The only physical symptom she has was a stomach ache. She did well on the GF diet, but last summer she started eating gluten when she wasn’t around me. I noticed this year she’s eating more and more. She says she has no stomach ache and that she feels fine. I’ve decided to add gluten back to her diet. She’s been eating gluten for a couple of weeks now, at every meal, and she’s fine. No reaction. Could the doctor have been wrong?

    • Lisa says

      No, the doctor could not have been wrong if he did a biopsy. When a Celiac to eats gluten (whether feeling pain or not) they are doing serious harm to their digestive system. Even ONE gluten exposure can do damage that can take months to heal.

      The way CD is diagnosed is they SEE damage to the intestinal lining, she’ been eating gluten for some time before the diagnosis and and the damage was literally visible that’s why she had pain, there was SO MUCH damage. You should not let her get to that point again, the consequences on her health are far-reaching. It will take a large toll on her ability to absorb nutrients not to mention wreaking havoc on her immune system.

      Celiacs who do not maintain a gluten-free diet are at risk for a huge amount of diseases because of the continual damaged state their digestive system is in, not the least of which being cancer:


      Please educate yourself for your child’s sake. A diagnosis of CD from a biopsy is a gold-standard. There is no mistake.

  16. JC says

    I did an elimination diet about 1.5 years ago. It was pretty obvious that gluten was the cause of many aliments I had been suffering from for years. Joint pain, mood, brain fog, always being tired, stomach and digestive issues. I went Paleo for a few months and felt much better. I’ve gone back to eating non-paleo items, but still eliminating gluten items. However, I have experimented with things like waffles, pancakes, pies and sometimes there is no reaction. Last week, I tried a Belgian Blonde Tripel beer, and I felt like I had been hit by a truck the next morning. There was no immediate reaction which was strange. I was non functional for half the day until the gluten was removed from my system, I’m guessing. What I can’t figure out is, why is that I can eat a piece of pie but not drink a beer? Could it be the type of grain, like white flour in a pie versus wheat in a beer? I’ve had a blood test for CD, which was negative.

    • Suzan says

      When I finally discovered I was gluten intolerant last summer, I went completely grain-free except rice. I also eliminated corn, soy, added sugars and most dairy (stayed with butter and aged cheeses). Within 2-3 weeks, all of my symptoms, including rashes, brain fog, weekly cankor sores, constipation, debilitating bouts of fatigue and weakness, joint pain – ALL miraculously disappeared. Even climbed a mountain. Until one night I had a couple of beers and it was like as you said, getting hit by a truck. My brain turned to mush and all the symptoms returned, even the cankor sore. I will never have another beer as long as I live. Also avoiding gin, vodka etc. Wine seems fine however. So, cheers! And best of luck to you.

  17. Kathleen says

    I’ve made a few comments here over the past. I decided to try something I’d read about, i.e. taking a lot of probiotics and no I’m not talking about merely consuming yogurt.
    I’ve not been able to eat a lot of foods for many years due to ‘sensitivities’ including pretty much all grains and all legumes. From what I’ve read, these all contain phytates and a few other ‘anti-nutrients’ as they’re called some of which can cause leaky gut. My deduction is that we also, by consuming these phytate foods induce an increase in undesirable organisms like candida that can thrive on phytates, estrogenic substances, stress hormones, sugar,… and wammo we have more negative health issues.
    So if we properly treat the phytate foods as in old world methods so they can be consumed without issue, and we treat ourselves with probiotics starting with once daily and working to thrice or whatever works for our bodies – will this help?
    Well, after a few weeks of probiotics 1-3x daily depending on how I felt that day, eating clean, and then trying at least one of my problematic foods, I had no issues. Was I able to do this 3 days in a row? Not yet unless it was a flu bug I got that was going around at the time.
    What I’m seeing is very promising and I was wondering how many others would like to try it out.
    In order to consume those phytate foods which is basically all seeds – grains and legumes, you need to do various processing, i.e. soak for a few days with clean water daily (not fluoridated), sprout, probiotic addition, then heat treat. There are a number of sites online that provide some good old world treatment techniques. Its just in N.Am. where we have this need to cut corners and do everything in 2 seconds to get the profit, we’ve cut those essential techniques for our health out thinking they weren’t important. Guess what… they are.
    In my case I’ve also become allergic to a number of items assumingly because of the leaky gut issue. I’m praying that this will alleviate that issue as well. So far, I’m seeing positive results as with the half bag of potato chips (which I became allergic to potatoes) but I’m treading carefully for the most part.

  18. Cat says

    It seems like these symptoms would sum it up pretty well for me. I must have Gluten sensitivity. What I can’t find anywhere or get any really good info, and what’s been terrifying me is the bleeding.

    Does anyone else feel like their intestine is bleeding? It’s not just in my stool, it’s scary, I can feel it pour out of me. When I get really sick I can see about a cup or so of blood left behind. I’m young, living on my own. My family doctor keeps telling me I have IBS, I’m scared to tell my mother. Can anyone tell me if they have this too?

    • Maggie says

      Yes Cat, I also bleed. I have been gluten free for a bit over a year now and because I believed I was merely “intolerant” (and regarded this not a serious as CD) on rare occasions I cheated this always lead to bleeding again within 48 to 72 hours ;(

  19. Tanya says

    Tapeworm infection can mimic gluten sensitivity symptoms, including joint pain, brain fog, fatigue, and dermatitis (rash), as well as constipation, bloating, gas, diarrhea, nutritional deficiencies, etc.

    Symptoms become worse or are observed after eating gluten, because it is a difficult protein to digest and this digestion occurs in the small intestine. This stresses – that is, puts physical pressure on – the tapeworm(s) and the tapeworm(s) releases toxins, thereby producing brain fog, joint pain, rashes (and other allergic type reactions like runny nose), etc.

    Nutritional deficiencies can lead to osteopenia or osteoporosis, neuropathy, compromised immune symptoms, sub-clinical thyroid dysfunction (through nutritional deficiencies – most notably iodine, reproductive issues (amenorrhea, infertility, etc.), fatigue, mood disorders, etc.

    If you have ever eaten raw fish (sushi/sashimi), under-cooked beef, or pork. you may have acquired tapeworms. It only takes one time. 

  20. says

    To: Meagan Sheeler – If your stool is light-colored, check your iron (ferritin) levels, that could cause your symptoms. If you’re getting a tingling in your hands and feet or in your head, check your B-12 levels. Both of those (and lactose intolerance) seem related to gluten-related diseases.

  21. Meagan Sheeler says

    I’ve been off gluten for two years. I’ve been lactose intolerant my whole life (45), now I’m wondering if I’m becoming sensitive to corn since I have reactions (bathroom, cramps, loose stools) overall feel crappy. I read above about corn protein. Is this a possibility? Do I have to say goodbye to popcorn?

  22. maureen says

    I find it astounding to read these comments and insights into GI, CD and the gluten related issues. Does anyone know why this is happening? I’ve been in denial about my sensitivity/intolerance and had a burger with a bun last night and my stomach has been out of whack all day today, I’ve had a nasal drip and my eyes were stinging, red and sensitive. I’ve taken an allergy pill and my eyes have let up a bit but not the nasal and obviously not my belly issues.

    Reading all of these comments makes me wonder why this seems to be happening now more than ever? Is it the glyphosate that is sprayed on wheat that is exacerbating it all?

    I have to admit I did read all of the hundreds of comments, and maybe this has been talked about already but I was just wondering if anyone had any theories about why this seems to be so mainstream nowadays.

    • Karine says

      Hi there!
      I’ve been reading a lot about food sensitivities and it seem that it has a close relationship with food additives, pesticides, and anything in our food that is not food! Seems that our bodies have too much pollution to handle, and then they get extremely sensitive to some things. In other words, if was only gluten, the unhealthy item in our meals then probably our bodies would deal with it.

      Also, I have seen that GMOs are related to a series of allergies in cobaias and in humans.

      I wish we all could grow our own food! We surely would be healthier!

  23. Debbie says

    My 15 year old son has had increasing health problems over the past several years — in short, persistent migraines, severe insomnia, lots of vomiting and GI upset, muscle pain. A month ago, we took him off Gluten (although every doctor I asked said that was not called for). He feels better than he has in years. My questions are 1) have a ruined the chance for CD testing since he has been off gluten? and 2) he has accidentally ingested gluten three times, being new to the diet. Once, some beef jerkey, second, a fortune cookie and third one cracker at a party that he thought was GF. All three times he has gotten violently ill with stomach pains/cramps and throwing up. How could he eat these things one month ago and now be so sensitive?

    • Katherine Conway says

      He has a leaky gut from gluten. It is in the process of healing by not eating gluten. When he eats it again, it’s like ripping open stitches on a wound that has not healed yet.
      Good Luck, it is a learning experience

    • David says

      >> 1) have a ruined the chance for CD testing since he has been off gluten?

      No, not in the least. They will give him a ‘gluten load’ before the biopsy, that is, make him eat gluten!

      The only unfortunate thing is about the test itself–the gluten load will make your child sick for a bit. I don’t know of any other test in medicine which makes someone so sick.

      If you decide to do a CD test, do it soon. Why throw away months of gluten-healing for the sake of the test?

      You could decide that he is gluten sensitive and needs no test. This is perfectly reasonable and according to your experience, almost certainly true.

      It is also possible that your son does not have CD, and is just gluten-sensitive. In any case, do not fall into the terrible trap of thinking that gluten-sensitivity is not serious if it is not CD.

      >> How could he eat these things one month ago and now be so sensitive?

      This kind of experience is normal. Sensitivity in the acute sense does increase when a gluten-sensitive person comes off gluten. This is not that unusual when you think about it–a regular heavy smoker will not cough when smoking a cigarette, but if he gets off the cigarettes for long enough he will.

      Do not make the mistake of thinking (as some people do) that the increased sensitivity means that gluten was LESS damaging before the person came off it. There is no evidence for that. Think of the smoker and the coughing and the difference between an acute and a chronic reaction.

    • Kate says

      It is possible that his antibodies to gluten have decreased due to his body healing up. I slipped up six months ago(after removing gluten and indulging in pizza) and paid for it for 10 days. The gastro gave me a stern “talking to” and I was told that’s why.

    • Jon Neviaser says

      Debbie, I am 57 and have been off gluten for 4 or 5 years. I had always suffered from brain fog, etc, I’m much better these past few years now that Im gluten free, but if a restaurant serves me the wrong Scone or waffle, I will be sick and throwing up in an hour. Full recovery time is numerous hours beyond that.
      So yes, it must be normal for your son to no longer be able to cope with gluten since it is not present most of the time. He is lucky to have learned about it this young. Good job!

  24. Keri says

    I have been dealing with breathing issues for the past 3 years. I also have major joint pain, to the point that I couldn’t walk and was riding along in a borrowed scooter. I’m wheezy, bloated, have no energy, walking makes me short of breath, I have been breaking out on my chest and back with tiny itchy little bumps. After a shower or bath my face is red in the shape of an apple and I’m struggling to catch my breath. I’m in the hospital 5-7 times per year with respiratory failure and my heart rate extremely high. My last visit my oxygen level dropped below 70 and my heart rate was 170. I didn’t think I would be leaving the hospital and sent texts to everyone telling them I love them.
    I have seen doctor after doctor and specialist after specialist. I have had allergy blood tests done, heart tests, breathing tests, blood gas tests (those hurt!), endoscopy tests, nothing! They have NO idea what is going on. After reading through these posts and seeing so many of the same issues I’ve been dealing with, I’m thinking I may have stumbled into the right place. I’m going to give cutting gluten from my diet and see if things improve. *fingers crossed*

  25. Faz says

    I have been going gluten free for about 2 months now because I deduced that it was affecting my gut and I felt great. Problem is—I have done the blood screening and it came back negative. I have tried reintroducing gluten into my diet and symptoms have returned. Now my friends, family and Doctor are saying its all in my head…

    • David says

      Never mind your friends and family. But Question your doctor. If your doctor is saying it’s in your head only on the basis of negative blood tests, question whether your doctor is adequately informed on issues related to gluten intolerance.

      It is very well-known that no blood test gives conclusive negatives for gluten sensitivity. In fact, they do not even give conclusive positives.

      Quoting Dr. Thomas O’Bryan:
      “You do a test, it comes back negative but you know when you stop eating gluten you feel better. And the doctor says ‘It’s OK to eat gluten the test is negative’ NOTHING COULD BE MORE WRONG … You feel better when you’re not eating gluten THEN don’t eat gluten.”

    • Dani says

      I have Lyme disease which brings a myriad of other issues and when I’m GF/DF I feel amazing. Recently I over did it after thanksgiving and it was bothering my stomach. My doctor told me to stop wheat and dairy, it worked like a charm within 3 days.
      The issue with your test coming back negative may be because of you being GF for 2 months already so you’re not producing the enzyme your body makes to break down the gluten so the test isn’t finding that. Eat wheat for a week then test.

  26. Shelley says

    I had the Cyrex Array 3 testing done, and there were a number of antibodies that showed up – mostly transglutaminase ones (5 out of 8 of these). Is this conclusive enough to say I should never eat wheat/gluten again? Do these show up in everyone? I truly do not feel a difference after an elimination diet (that also included dairy and all the other cross reactive foods that I was positive for on the Cyrex Array 4), but I don’t want long term damage. Thank you!

  27. Sara says

    What do you suggest for people who appear to have food intolerances to basically everything? I cut out gluten, and that worked for about a year. Then I had to cut out dairy, then soy, then vegetables. I’m now only able to eat boiled chicken/chicken broth (homemade from a chicken), ghee, and eggs (though the eggs have been giving me trouble lately).

    I am so hungry, yet I feel better when I don’t eat. I struggle with digestive issues (cramping after eating anything except for the foods above), constipation, chronic migraine, insomnia, brain fog, joint pain, muscle pain, malabsorption, and hypothyroid. Food exacerbates the physical pain and problems. If I eat something that doesn’t agree with me, I feel the consequences for a week or more. This is ruining my ability to function or live “normally”.

    I know that I have gluten issues and will likely never be able to tolerate it again. I need to figure out how to eat something though! Does anyone have any suggestions as to how to retrain my body to accept food?

  28. Stephanie Perekovich says

    I’ve suffered from gluten intolerance for over 15 years with terrible gastrointestinal symptoms. I have never been tested for celiac because my doctor told me, “there is no specific test for gluten intolerance, only to remove it from your diet and interpret the results.” I’ve tried removing it 100% since August but I find myself slipping. the longer I go without eating it, the worse the reaction is when I do eat it. I am currently wide awake when I should be sleeping because I am in incredible pain. I had a bowl of soup (chicken/beef base has gluten) and a piece of pizza because I was tempted. I was fine until 4 hours later when I awoke from a deep sleep with the worst cramps and a pit feeling in my stomach. hot flashes and pain was specifically what woke me up. I had to run to the bathroom after experiencing gurgling cramps. I have a throbbing headache and my heart is racing. I’m wide awake but yet so tired. I’m not sure why I do this to myself but I regret it every time.

    • Emily says

      Stephanie, I feel your pain. I am having a very hard time giving up the foods that are making me sick. It’s really getting me down and I feel as tho I need professional help at this point. Some kind of additional support.

  29. Devon says

    Hello all, I recently would like to ask this blog/forum about the various neurological symptoms anyone has experienced. I was diagnosed with non-celiac gluten sensitivity around a year and a half ago. Looking back on my childhood this was no shocker; i had chronic digestive issues almost to the point that it was a joke amongst my family and friends. Prior to my clinical diagnosis i was experiencing many weird neurological symptoms such as; twitches, fasciculation’s, vertigo/dizziness, anxiety, muscle spasms, and of course the infamous digestive trauma ( i know that some these symptoms can be attributed to my fight with cigarette withdrawals). Initially i was worried about MS, ALS or some other dreaded illness, but after extensive blood tests and MRI’s this was fortunately not the prognosis. Today, luckily my vertigo and anxiety has gone away, however i still have muscle pain/spasms/ fasciculation’s, joint pain/stiffness, walking difficulties and all these symptoms seem to primarily affect the left side of my body while occasionally affecting the right. I am a 21 year old male, played sports my whole life, and eat a primarily gluten free diet with the periodic unintentional exposure. To conclude my rambling, i was simply wondering if anyone else has experienced similar symptoms to mine and if they eventually dissipated and or went away.

    • says

      For Devon – Please get your B12 levels checked (look up the effects of very low B12 and see if they don’t match your current symptoms). I’ve noted that there seems to be some correlation between gluten sensitivity, low B12 and low iron (ferritin). You may want to get your iron checked as well.

    • says

      You should also take Vitamin D supplements. There is a strong correlation with gluten issues and Vitamin D deficiency and there is also more and more research that indicates that Vitamin D is essential for nerve function. My doctor has me on 5000 IU of Vitamin D daily.

    • Kathleen says

      Hi Devon,
      I most definitely have and I too have found it to be more associated with the left side. Muscle spasms, muscle twitching, digestive issues,… I found that I do the best when I go off all my allergy foods, i.e. most nightshade, onions, avocado, and stay away from 99% of all seeds although I can handle most nuts with the exception of hazelnuts which I’m apparently allergic to. It does take some time to clean out ones body however and I’m still trying to get a good balance. I too have not been able to get back to my athletic self – I used to coach Div 1-2 soccer, play soccer, and a myriad of other sports and physical endeavors. I too thought I had MS however its somehow associated with the food. I must add that corn is one of the worst offenders – the muscle pain and whatnot that I get with it is quick and painful and takes upwards of a week or more of clean eating to even remotely get it out of my system. And that’s organic sources as well.

    • Mallory says

      Unrelated to gluten, but is related to immune response. My mother was almost diagnosed with ALS due to walking difficulties, stiffness and so forth. She has since been diagnosed with paraneoplastic syndrome which is a very rare neurological condition caused by an immune response to cancer. It can show up a few years before the cancer is discovered in the body. Might be worth looking into. She had the cancer removed and is walking normally again.

      • Tony says

        @MAllory.. Cancer ? Why worry the guy. He is 21 years old and your mother is how old…don’t confuse his situation

  30. Lisa-Jayne says

    Hi Chris.
    I am a 43 year old woman living in Ireland. I was diagnosed with Hypothyroidism about 8 years ago. I have suffered from moderate psoriasis since I was a child and last year, I was diagnosed I had Psoriatic arthritis. I also have a severe neuropathy in my left foot (which is still under investigation). I have always been aware of good nutrition and eat pretty healthily, work out, don’t take antibiotics etc, so to feel so sore and unwell a lot of the time has been very difficult for me to deal with, especially as I’m mum to a two year old.
    About a month ago, I decided to do a detox for a week and during that time I stayed away from carbs. After day three, I realized that had I slept without being awoken by the searing burning pain in my left foot, caused by the neuropathy. (I might also add, that I had been put on some seriously heavy pain meds and nerve blockers for this condition, but had also stopped taking them for the detox week). Once I became aware of the improvement, I started taking note of other things; the joint pain in my knees and hands disappeared; I didn’t feel sluggish; Food digestion and overall gut health had improved; No bloating. Skin texture improved; I then took a look at the changes I had made to my diet and figured out that the lack of wheat/gluten in my diet must be the contributor to this wonderful feeling of well being. It was an epiphany! I told my GP and she was amazed at the difference and has since carried out a blood test for Celiacs (although I’m pretty sure it’s more likely to be Gluten sensitivity). I have been off Gluten for a month now, and although my psoriasis hasn’t improved much, everything else has improved by 85%, especially the neuropathy, and I now sleep all night, every night.
    As an interesting note, I baked wheat bread for my daughter one day, about two weeks into my gluten free eating plan, and decided to indulge in a few slices as it smelt so good. I was up most of that night with sever pain in my foot and my stomach! That sealed the deal for me.
    For anyone afraid of going gluten free for convenience reasons, I have to say, I haven’t had a problem with it at all. There are many gluten free alternatives available these days, so you don’t have to deprive yourself, you just have to shift the way you think a little. If I have to choose between my previous eating habits or being pain free… well, it’s a no brainer! Thanks for reading 😀

    • Becky says

      Googling “neuropathy and wheat” is very interesting. :)

      My husband had scaly rashes and tried everything, including medicated creams, shampoos, soaps, etc. etc.

      What FINALLY WORKED was cutting out all toiletries,, even the natural ones. He uses no shampoo on his hair (easier for guys to do) and shaves with Desert Essence tea tree oil soap. This was several years ago, and the skin issues have not come back. Really, it’s amazing to see scaly, itchy skin turn to healthy pink, and soft like a baby’s bottom!

      • Lisa says

        I have had an itchy hive like rash on my scalp for 2 years. I have no other issues on my body except general itchiness. The rash bubbles up then pops and weeps a clear fluid, then gets scaly and kind of dries up but never goes away. I thought in the beginning it was poison ivy or shingles. I have had food allergy tests, and chemical patch tests that showed nothing, and then a biopsy of the area which showed an allergy… but have gotten no answers except eczema. I could tell eating certain foods made it really bad, also the products when having my hair done. I have since been trying to be gluten free. The rash hasn’t disappeared completely but the itchiness and weepiness has cleared up. I think this has something to do with wheat or gluten but my dermatologist says no. I have just switched my shampoo, detergent, and soap to gluten free, and my itchiness is SO MUCH BETTER. The rash is dry but still scaly on my scalp. Maybe over time of GF it could go away. I haven’t found much about this except for possible dermatitis herpetiformus? I’m at my wits end trying to clear this up.

    • Cheri says

      I had been deteriorating all of 2014.I was in denial because I am an RN and have been pretty healthy.I wound up half dead in the hospital depleted of every mineral…elcetrolyte,etc.after weeks of intractable vomiting and diarrhea.That was August 2014.I continued having bizarre health problems after discharge from hospital.My PCP left no stone unturned and ordered enough labs to make me weak:) The IGa was very high…he ordered an endoscopic biopsy and celiac was confirmed. For me I can tolerate a variety of rices…..quinoa….corn meal/polenta BUT the processed gluten free products destroy me.The breads….and such.The milk intolerance is odd because I can usually tolerate 1/2 &1/2 or cream in my coffee and a random glass of whole milk but basically I avoid the processed G-F products and milk products because they cause severe gastric distress. I eat nuts….rice….quinoa…..potato..yams….fresh fruits….vegetables…meats. Some cheese…butter…olive oil.Eggs. As long as I eat a whole foods natural diet with zero to minimal processed foods I feel fine.If I eat just meats…..eggs….vegetables and fruits my stomach never rumbles with excess gas,etc. This is an informative site and thank you for that.

      • Suzan says

        Hi, I have CD and you just described my diet to a T, almost all of that works for me as well. And I too react very poorly to the processed gluten-free foods. My diet mostly consists of whole foods – veggies, fruits, eggs, pastured meats, seafood, rice (all kinds), sweet potatoes, butter, aged cheeses, guacamole, and 2 brazil nuts per day for the selenium. No added sugars. I also still avoid corn and soy-based products, had a bad reaction to popcorn… but whole cooked corn seems to be ok, so maybe I’ll try that polenta :) Jury is also still out on quinoa, but I do seem to be fine with buckwheat. Anyhow glad to see someone else’s diet so closely matches mine, as mine is kind of a version of GAPS that I tweaked to include stuff I’ve learned from Chris Kresser. It turned my life around. Thanks for your post and best wishes for your health.

  31. Marilyn says

    It has been very interesting reading some of these comments. I have, over the last two years been thoroughly tested for every possibility of heart disease as my symptoms include bloating, nausea and extreme fatigue. These symptoms frequently appear while I am doing some physical activity. Finally all of the doctors I saw told me it was not my heart, at least nothing they could detect. I still have the symptoms but no physician has suggested CD or gluten intolerance. It’s as if they do not know anything about it. I feel like I’m viewed as a hypochondriac! Lately, I’ve done a lot of research and am pretty much convinced that I am gluten intolerant at the very least. It’s very frustrating when you can’t rely on your doctors to help you. It has helped to read about others’ experiences. Thank you for sharing.

  32. Ashley says

    I was having gut problems with pain, bloat, frequent stools, nausea, and indigestion, so after having a CT and going to a Urologist for newly found kidney stones the doctors ruled all that out. I then looked towards GI. They did a colonoscopy, and an EGD and took biopsies. The biopsy came back positive but the doctor said “It’s just a mild case we need blood work to check also”, so I went and had the blood work done, which I did not understand why I needed this because the Biopsy was what was suppose to be the deciding factor of positive or not. The blood work came back negative so now I am waiting for my appointment with the doctor to find out what he has to say but the nurse that called with the blood work results said he will probably not diagnose me with CD because my biopsy was “mild” and the blood work was negative. I was under the impression that if the biopsy came back positive then the diagnosis was CD, why would my doctor think differently? I’m so frustrated with doctors telling me and treating me like nothing is wrong. I have been gluten free for almost 3 weeks and feel so much better. I did try Domino’s gluten free pizza last night, knowing that it would probably be contaminated and sure enough woke up this morning and I have bad joint pain, something that I have not had prior, so I know that the contamination is affecting me and I hope this convinces my doctor but I’m not holding my breath…..

    • Becky says

      Don’t assume contamination. I would first suspect one of the dozens of ingredients in the gluten free crust. Gluten free baked goods are loaded with finely-ground starches and powders and chemicals and gums that can easily pass into the bloodstream and creative havoc with joints, headaches, etc. etc.

  33. Lenore says

    I went Gluten & Dairy-free as part of a liver cleanse for 30 days. I didn’t have any of the symptoms you mention before the cleanse, I just thought it sounded like a neat idea. During that time, my family observed that I was fatigued, irritable and at the end, I even had congestion, which I attributed to a cold.

    After 30 days, I re-introduced gluten with a single homemade whole-wheat muffin. Everything was fine that day, but I spent the following day in the bathroom in terrible discomfort. Am I now doomed to be permanently GF because of my little 30-day experiment? I used to eat anything I wanted and never had any signs whatsoever of intolerance. :-(

    • Jackie says

      The average age of diagnosis is 56 because many people have no obvious signs that damage is being done. It is far better that you find out now than later when you have an advanced autoimmune disease.

    • Becky says

      Based on my experience, not on science, it seems that when we stop gluten, the gut bacteria that thrive on it die off, making it harder to digest. I am not celiac or gluten sensitive (according to tests), but I am hypothyroid, and when I stopped gluten, my thyroid antibodies went to ZERO. The doctor said I no longer had Hashimoto’s. But. Gluten is out there. And we will get it without knowing. So my real-world philosophy is to relax, don’t consciously eat gluten, but don’t question everything, either. I want some gluten gut bugs to be available if needed.

    • ClareB says

      It’s very likely you have a problem with gluten – a lot of people don’t have symptoms, but there’s stuff going on underneath that could show itself as horrible diseases later in life. The fact that you reacted to the clense itself to me is indicative of your body getting worse before it gets better – i.e you definitely have a problem with it. You then ate it again and had a reaction. Unfortunately I think you have a problem with it – my theory is that it probably doesn’t do anyone any good and is behind a lot of illnesses / autoimmune problems out there. Despite what the medical profession might say! If you want to go back to gluten your body will get over the shock if you just eat little bits to begin with. However, I would cut it out properly…and just see what happens. It may give you a longer and healthier life!

  34. Kim says

    I have CD, it took forever to figure it out. I had a weepy rash all over my body and my first doctor said it was Staph and I was on 3 separate rounds of antibiotics. My next doctor was gluten sensitive and immediately said it was a Gluten rash which is rare but people get it, it’s a weepy rash that is horribly itchy and painful and does not respond to antibiotics both orally and topically. 3 months without gluten it started to go away, now 1 1/2 years later my rash is mostly gone but I do have small outbreaks on my hands because I love baking. As for effects, when I fall off the wagon and eat something that even has very little gluten I’m sick for days with sever stomach pain, I even get giant pimples and it takes a couple of weeks for everything to regulate again.

  35. jay says

    Yeah, months ago I was having trouble, eben thought it was paricites, that I had caught in India, I did a meditation retreat and during it had little to no gluten, or milk,at the end of.45 days in retreat iI came.out thinking meditation had made a profound.impact on my health and mind.state…well it had but in a different way than I thought…after a few days out, I.was feeling the same.irritabkitly, and emotions that seemed to be uncalled for, thanks to the meditation the mindfulness was strong enough to just observe these things rather than be them….it became quickly apparent that the reactions physically (pain in the colon, tiredness, fogyness of thought, Etc) were comming on after eating, and not from.every meal but only those where I had eaten some form of wheat….I looked up the effects of CD and had most of the list, so cut it out, now I notice when something has gluten in it, even if I don’t know before hand, last week I was really struggling and it was after drinking something with no wheat in it (soy milk, home made with, tapioca, red kidney beans and …yep barley grains put in it) asked them to hold the barley grains and no pain…..didn’t even actually know it was barley until looking up a photo, because in Thailand of course they don’t call it Barley…..

    I notice I react to some.but not all milk…wonder if it maters if the cow was grain fed?..

    Either way, vegan, gluten free, just feels best for me…

  36. Kathy Wood says

    I was emailed that my test results were normal but a week before the test, I started cutting out gluten and for the most part (this last month) have remained gluten free until last night. I did not have any GF pasta in the house so I used reg pasta. I felt miserable after I ate, and had a hard time sleeping last night. Also this morning my stomach is killing me and I feel like I have just eaten a huge steak! Before I started cutting back on gluten, I was feeling horrible at least 3 days out of the week. Test or no test! The way I feel today has convinced me I need to stay away from gluten.

    • Mary says

      The reason your test was normal was because you went gluten free BEFORE the test. How are they supposed to detect CD properly? I was told to eat the way I always have before I had my first gastroscopy, so that he could detect anything wrong and get an accurate biopsy. A year after going gluten free I had another biopsy and the damage to my small intestine was healed!

  37. Nikkittah says

    I have non cd gluten intolerance and I have drastic mood swings and minor constipation, I don’t know why but I get annoyed when people deprive me because I do not have cd. I can eat a slice of bread without a problem, and when I eat a lot of gluten, then the problem strikes. On top of that people these days are not well educated about gluten. Soy sauce has gluten in it, but it is so diluted that it is certified gf in most countries . People are clueless nowadays.

    • gems1204 says

      I am the same way! On a side note for me I have noticed durum wheat also bothers my system. Semolina and other types I don’t have any issues with. My symptoms are bloating and swelling in my fingers and joint pain about 12 – 16hrs after ingestion. It takes about 3 days to work itself completely out of my system.

    • Mary says

      It’s different for everyone. I am diagnosed CD through biopsies and diluted or not, it should not be certified GF. You have no idea how sick I get. I can’t cheat. It’s not worth the headaches, body’aches, explosive diahhrea, fatigue… I ate off a gluten free menu at a high end restaurant last Wednesday December 17. Only today, December 21, do I feel normal again. I reacted to something that was contaminated. Could have been the chefs didn’t clean the work surface first before cooking my food. I don’t know. Those are the chances I take. It only takes a molecule , so no, most of us can’t handle a little gluten.

  38. Grace says

    I’ve had GI issues for years, skin issues, migraines, and the majority of things listed with CD & NCGS. I had an endoscopy but it was negative for CD. Then they did an ELISA for wheat & gluten but it came back negative. The thing is I tried a gluten-free diet after my endoscopy & within a few days my symptoms began to improve, no more emergency stops for a restroom, no bloating, my belly is flatter, lost weight, better attitude, etc., etc.

    After the tests came back negative I tried eating flour tortillas and bread. The next day, I spent a large portion indisposed, if you know what I mean. Does it sound like I’m NCGS? I think so but don’t want to keep wasting money on testing. Opinions appreciated.

    • Marc says

      My niece got tested three times and all test were negative. The specialist told her to eat two slices of whole wheat every day for at least three before getting tested. She did and it was finally positive for cd.

      • Becky says

        Thank you for posting this Mark,

        I been at my wits end with doctors telling me low iron (of 20 years) is causing my symptoms. When I know I cannot eat any grains, dairy, soy or eggs because the side effects are felt through out my entire body.
        I tests negative for celiac twice but this was when I was mostly free from the above, as I cannot deal with the pain. I than tested my genes and came back negative for the HLA genes too.
        My greatest fear is that someday I will be hospitalized and they would literally kill me because they don’t believe how detrimental food can be to someone. I have a brain fog I cannot seem to get rid of and a warm sensation that I feel in my spine that are my current concerns.
        Doctors are clueless.

        • Marc says

          I had the elisa done and it came back positif for gluten, wheat, yeast, eggs, soy, chicken, turkey, salmon, cod, lobster, and bananas. My fatigue and brain have been the worst. It’s been 14years now and my dr sent me to see the sleep specialist and the last time she told me it was psychological. I’m the one that suggested I get tested because my nieces on both sides of the family have celiac. Did the blood work a week ago. I had stopped eating gluten for a week and a half and the brain fog completely disappeared. Just waiting for test results and if they come back positive I will then get an endoscopy done.

          • Becky says

            This started for me ten years ago after being given antibiotic for three years for ear infections. But prior to that I did suffer from low iron and no doctor ever looked into why. My symptoms early on was just something always wrong. Like a back ache or something else. Gradually I realize I was reacting to food and more food as time went on.
            It is very hard to only eat meat, fruit and veggies as I was not a “cook” or vegetable person before. So for about a year I’ve been eat this way but I cave. I used to feel great after two weeks eating clean, now after five weeks I still have brain fog and what feels like a hot spine.
            Anyway, after I read your post, I really want to stop caving because I think these foods are a problem. Even if my doctor thinks it’s impossible.

            • DMK says

              Yes, I also took antibiotics prior to discovering I had a sensitivity to gluten. I am so glad you asked this question. About 5 years ago I had in a 3 month period that i had a total of 6 overlapping infections. Two were viral and four were bacterial.

              Since then I have seen specialist after specialist trying to figure out why i had a chronic breathing problems. I was sent to dr john sinacori at EVMS in Norfolk, Virginia. He is a Otolaryngologist, ie; Esophageal specialist, which you think has nothing to due with gluten. However, He discussed the theory of balancing my body’s PH. Crazy I know, but after 5 years of struggling to catch my breath, I was willing to give it a try.

              I am following a diet developed by Jamie Koufman, Dropping Acid the Reflux diet cookbook & The chronic cough enigma. The books say to do a 2-4 week “diet” to balance the body’s PH. I have been doing the eating plan for 2 weeks and am seeing positive results so far :)

    • kk says

      I have a few family members that have been tested and everything has come back negative but they have stopped eating gluten anyways because they become so sick when they do eat it. I think the test is wrong sometimes. I’ve seen it happen too many times. I say trust your gut. If you feel better when off of it then don’t eat it! They tested my mom 5 times and the 5th time it came back positive. The test isn’t always right. You know your body best not a test.

    • Mary says

      Did you have a biopsy taken as well during the endoscopy? Damage to the villi in the small intestine is 100% verification of celiac disease. If you did and it was normal, you are very lucky. You’re probably just sensitive to different things and might do an elimination diet. Cheers!

  39. Esteban says

    I was diagnosed at the age of 30, after some dermatologic issues. I embraced the free gluten diet and in 30 days all my skin worries disappeared, my humour improved and my belly flattened just like after a miracle.
    Since then I try not to consume gluten (it’s a little bit difficult, you cannot just discard every industrialized item containing gluten) and my life improved a lot.
    My body got used to “warm” me whenever I go off the diet and I can easily go back in track.
    The best way is to embrace the free gluten challenge!

  40. Marc says

    For years I have had the following symptoms: lactose intolerant, fatigue, irritable, brain fog, insomnia and so on. My doctor sent me to see a sleep specialist and was diagnose with sleep apnea. However, not severe. My symptoms continued and my doctor put me on antidepressant but it’s not helping. I finally saw a naturopath and he did a IgG Elisa Finger stick test and I reacted to banana, pinto beans, chicken, codfish, egg yolk, gluten, haddock, lobster, salmon, sesame, soybeans turkey, wheat, yeast, baker’s, and brewer’s yeast. He suggested that I stop eating gluten a few years ago but never did. Three weeks ago I cut out gluten completely from my diet and within 5 days I couldn’t believe how I felt. My brain was so sharp, brain fog completely gone etc….I have since seen my doctor and she is going to get me tested for celiac but I had to start eating gluten again in order to get an accurate test. At first I thought it was going to be very difficult to stop eating gluten but once you start feeling better you no longer care about food that contain gluten. I was still experiencing some fatigue but mind you my fatigue has been there since 1996. I don’t expect my fatigue to go away within a week. I was wondering how long it could take for my energy to come back once I’m on a gluten free diet? thanks

    • David says

      I am wary of the IgG antibody tests as a diagnostic tool–they have not been well-validated. I think there are loads of false positives–things people are supposedly reactive to that are doing them no harm.

      Your symptoms and story match mine pretty well. You are obviously gluten-sensitive. Stay off the gluten, be totally strict ahout it and consider going on a Paleo diet.

      It is one and a half years since I went off gluten. My symptoms included fatigue and brain fog which you list, and also depression which you do not. I had been tested for celiac disease years ago and it came out negative. Doctors told me nothing unfortunately about the possibility of non-celiac gluten intolerance at that time. Make a note of that. Even if the tests for celiac come out negative, stay off gluten. Despite what ignorant doctors do not properly take seriously, don’t play with brain damage — and I am serious about that, I suspect that when you have brain fog, in some cases your brain is being damaged possibly by your body’s immune system

      The brain fog cleared up quickly for me, the fatigue and depression more slowly, but also significantly. They have not gone away 100% yet, and it is unclear to me whether or not they will. I think I may have a celiac-related autoimmune condition which is somewhat refractory — that is, does not go away entirely when the gluten is gone. This could be partly due to the gluten being in my life for almost 50 years as I am close to 50. I have questioned Chris’s assertion that NCGS is not auto-immune, and asked him to support that but I have heard no support from him on the claim. I think it’s flat wrong. I think NCGS is often, if not even mostly, auto-immune like celiac disease.

      I know that my symptoms can get worse shortly after over-strenuous exercise, which can be a marker of auto-immune disease. For great advice on a possible Paleo diet for autoimmunnity, google up “the paleo mom autoimmune protocol”.

      Good luck!

      • terrayna says

        My son was diagnosed with CA at age 7.. He is now 16 and on occasion eats what ever eat wants .. it does not seem to bother him at all. Is this normal? Should I be worried?

        • terrayna says

          My son was diagnosed with CD at age 7.. He is now 16 and on occasion eats what ever eat wants .. it does not seem to bother him at all. Is this normal? Should I be worried?

      • Marc says

        Thanks for the response. I have also been diagnosed with depression and when I do strenuous exercise like running the brain fog gets a lot worst. I usually stop running within three weeks because I can no longer function. Were you able to resume strenuous exercise after you started eating gluten free

        • David says

          Hi Marc, very strenuous exercise still causes problems for me. It is too early to know whether that will be true for me in the really long run. As you seem to already understand from what you ask, gluten can mess you up in ways that makes other things mess you up as well. Sometimes when the gluten is gone long enough, things which used to cause problems no longer do. It is unclear whether that will be true with strenuous exercise for me. All I can do is check strenuous exercise again in the future and find out what happens.

          Instead of strenuous exercise, I do long walks and additionally yoga, with deep stretches. This is very good for you in some ways similar to exercise, but does not cause these problems.

          One other thing which, like exercise, is usually very good for you but which can be problematic with autoimmunity is intermittent fasting. I have recently found this to be a problem for me. Rather stupidly, I plunged headlong into three separate calendar-day fasts (which are around 40 hours long) with eating in the days between. It was all fine while they were going on but afterwards I had major fatigue and upset sleep for weeks, which is not quite gone yet after 4 weeks, but improved. This was really stupid because I knew you had to watch fasting with autoimmunity. A single 24 hour fast followed by a testing-it period would have been a more balanced starting experiment. So fasting is also something for you to be careful with.

          It so happens I was diagnosed with sleep apnea like you, and it is also mild in my case. This could be unrelated to the gluten condition, but it could be related also in a way unknown yet to medical science–I would not be surprised at anything that gluten can do.

          I cannot stress enough how important it is to stay gluten free and to be really strict about it, learning about how to avoid gluten-contamination. This condition I/we have is a VERY serious medical condition, not yet properly understood by medical science, which can get worse and worse if not properly handled, and should not be messed around with.

          Another piece of advice which worked for me is to eat some liver regularly. I trust this much more than multivitamins as a way of giving you added nutrition, I believe gluten sensitivity often comes with nutritional absorption problems, with or without celiac enteropathy,

        • says

          I have extreme gluten sensitivity that I developed about age 55. After two years of tests, I’d gotten to the point where I had to take a medical leave of absence from my work. I finally diagnosed myself, went off gluten and virtually all of my symptoms (brain fog, extreme tiredness, etc.) went away. I stayed off gluten for 6 weeks and then ate half a piece of bread. My symptoms returned in 4 hours. HOWEVER, I was still fatigued and had some weird pains in my extremities. I’d changed doctors and my new doctor found that I was extremely low in both B12 (explaining the pains) and iron (ferritin). If you’re feeling fatigued, have your iron levels checked. I’ve noticed from the comments here, that iron deficiency seems to be a related side-effect. Check your B12 levels as well.

          • David says

            Gary, your experience sounds like mine, except I had depression as well. I also had the low B12. If you have low B12 you need either injections or very high doses to correct it. Jarrow Formulas does 5000 Micrograms B12 and is gluten free. One per day, or even one every 2 days, is plenty. Not all docs know that megadoses can be done instead of injections.

  41. BB says

    I am at my wits end with this.
    I would love to know how many of you took antibiotics before this began? I was treated off and on for three years because of ear infections back in 2005. of coarse they never did work.
    Slowly the symptoms began with red itchy dots that would randomly appears, noisy stomach, hair loss, dizzy, bloating, constipation, slurred speed, orthodontics, hands/feet covered in blisters, yellowing palms, deficiencies, back problems, fatigue, insomnia, frequent urination, electric feelings on right side, my skin on half my body has a strange look to it rather creep/thinning look and on and on.
    Last year I eliminated all grains and i would improve at about two weeks. But I kept caving. Now I am egg free grain free, dairy free and nuts and seeds and still have symptoms.
    I have been to a few doctors that were suppose to be experts with this. Yet everything they gave me effected my stomach. Most recently Glutamine, it is suppose to help.
    I drink coffee just to keep going, to work. It is ruining my teeth and I feel like I am head towards osteoporosis.
    I am waiting on the genetic test to see if I carry the HLA genes.

    It is ruining my life!

    • Kathy says

      Hi, I can tell you that I had about half of your symptoms. My nutritionist put me on Bifido Bacteria, vit D, Glutamine, GLA, Omega 3. I healed wonderfully and had a new test that showed that I was not malabsorbing anymore. I can eat a little rice or corn, but no oats, gluten, soy, or walnuts. I try to stick to grass fed meat. I guess that makes a difference too. If you would like to contact them they are at weightandwellness.com
      They have a radio show every week and people call in from all over the world.
      I hope this helps!

  42. Deb says

    I’ve been trying to get diagnosed with something for 7 years. It wasn’t until I was watching the Daily Show that I realized that it may be gluten intolerance (Jennifer Esposito is my hero). I asked a doctor, who said it may be a problem and recommended that I try going gluten free. After about a week and a half, I was already feeling so much better. It was then that the doctor ordered blood tests. They came back negative for celiac but I had abnormal levels of T.. something- I can’t remember the name, but the terms used in this article sound very familiar. They asked to do another test of my T-levels (now 3 weeks gluten free), and those came back completely normal. So my question is: did going gluten free affect my test results? No doctor has been able to answer this question confidently.

    Skip to 7 weeks gluten-free. A new doctor tells me that I need to have a biopsy and endoscopy to see if I have celiac disease or something else. I ask “I’ve been gluten free for a while- is this going to mess up the results”. Answer: “maybe. eat gluten for a month and then we’ll run the endoscopy.” Worst month I’ve had in a long time. I was so sick and all of my pains started coming back- not just the stomach- I got a rash, a cold, an eye infection, my muscles started to ache, I had stomach spasms, my anxiety and depression kicked in to high gear, I couldn’t sleep well but was tired all the time, my allergies came back and my nose was stuffed up, add to that inflammed joints, acne, hair loss, blurry vision, and weight gain. I was an emotional and physical mess. Then I had the biosopsy and the doctor said I needed to stay on gluten until the results. 3 days later (today) I get a generic e-mail from my doctor’s office saying that I have stomach inflammation (no shit! *eye roll*). No other description. They said to keep my follow up appointment (2 weeks away) and I’m assuming to stay on gluten as well, though I’m waiting for the nurse to return my call/question. And now the voice in the back of my head says “maybe you weren’t gluten free long enough?” Doubt I’ll get an answer to that too, but at least I know its gluten…

  43. andrew says

    been on a gf diet for 6 month now and never felt so good.my symptoms were mainly restless muscles and pshycological issues – i recommend anyone feeling like shit in general tries this diet !!

  44. jamie says

    I’ve just been diagnosed with sever perifial nuropathy,
    and gluten intolerance and that was that, all i got was good bye no diets to follow or anything should i start following a gluten free diet now………help

  45. Nancy says

    I am not sure if I am celiac or gluten intolerant. I had experienced severe gastrointestinal issues for a few years and I could not pin point the problem. Someone had suggested that I may be gluten intolerant so I played around with the diet but nothing serious until I started having dental issues and lost a couple of teeth from serious infections. It turned out that my deficiencies were causing most of the problems I was having (decreased dental health, chronic constipation, blister rash, fibromyalgia, chronic fatigue, etc.). I have been gluten free for almost 2 years now. I have a serious reaction to cross contamination (toasters, fryers, etc.) and the most gut punching pain and acid reflux to things such as “natural and artificial flavors”, sucralose, spices, and other random ingredients that are related to gluten. This makes for an interesting life and I spend most of it reading labels. I don’t eat out much, most severe reaction occurs within minutes sending me flying to the bathroom and the most uncomfortable is the punching pain in my gut. I don’t know what is the exact difference between celiac and intolerance except that I do not have insurance so being tested is out of the question and I will add that I don’t need to put myself through six weeks of pain for a test to tell me what I already know – I cannot digest gluten in any form.

    • Mary says

      I cannot tell you how your life mirrored mine before I was diagnosed with Celiac. I’m pretty sure, though I’m not a doctor, only a nurse, that you’re probably Celiac. There is a blood test as well as a breath test. But you need to be ingesting gluten for ANY test. I wish you could get a gastroscopy but anyway you’re definitely not alone in your suffering. I still get “Glutened” once in awhile!

  46. Lori says

    I was diagnosed with Celiac Disease in August of 2013. I had blood work done and scopes done to confirm the blood work. Since then I have gone completely gluten free. I had my labs done again in January and my numbers had dropped considerably. I just had them done again and I tested 144 (norms of 1-19) and 50 (norms of 0-3). I have not changed anything in my diet, I am still completely gluten free. Has this ever happened to anyone or any ideas on what could be going on. The only symptoms I currently have is really bad acid reflux. I am at a complete lose.

    • Kathleen says

      @ Lori, My guess is you’re likely allergic to more than just having the issue of wheat gluten intolerance. Try eliminating other grains, i.e. corn. Corn is one that is often brought in as a stable when individuals go wheat gluten free and yet there are many that are allergic to it. The elimination diet is a good testing method. If that doesn’t work, try elimination of the nightshade family, i.e. potatoes, peppers, … Again, it is another culprit that can serious issues with many.
      I’ve had to pretty much go all ‘seeds’ free in order to not have any inflammation, as well as onion free, and most of the nightshade free.

  47. Jen says

    Hello Chris,

    Really great article! I am 38 and have been gluten free for 3 years now. Due to multiple symptoms mainly neurological. So many little annoying symptoms also disappeared after being gluten free. And miraculously my stigmatism that I have had since I was in middle school went away after being GF for 6 months. I no longer wear glasses.

    When I do get glutened, I wake up the next morning with cramps in my legs. It is the first symptom of many after accidentally eating gluten. Recently I started a carb-free diet. I have been on it for four weeks and loosing weight successfully. This past week I have been getting the gluten symptoms but have been really good and cannot pin point where I possibly was gluten. I am now the weight I was when I went GF and wondering if it is possible that the fat I am loosing now is releasing gluten into my blood stream that has been stored in my body and therefore causing gluten symptoms to occur again. Wondering if this is far fetched….

    • Val Patenaude says

      I’m the same as your Mom. I can eat spelt flour and semolina but not modern wheat. If I eat the latter, I ache from head to foot. Recently, I have convinced my doctor that not only is this a real reaction, it is fairly common. She had another patient who was being told she had fibromyalgia and suggested she try going gluten free. Et voila! That was the problem. Fortunately, spelt flour is easy to get and works just like wheat flour.

  48. Drew Williams says

    i spent 18 days in hospital with complicated diverticulitis that got me asking what might be going on.

    After getting frustrated with the surgeons, i sought out a functional medicine specialist who tested with Cyrex Labs and found i was off the charts negative with about half the markers. This includes one of the Celiac markers and i’m borderline on the other. So i’m progressing to celiac according to her.

    However, i do not experience any digestive issues when eating wheat and flour products.

    Also, i did the 30 day challenge eliminating everything from my diet (wheat, flour, caffeine, sugar, all non-wild meat, ect) and basically did not feel any different.

    So the test says i am very reactive to wheat yet i have no symptoms when consumed.

    However, at the end of this article is says the 30 day paleo diet is still the gold standard for knowing if you are reactive. But this is then contradicted by the point above where it says 50% do not feel digestive issues.

    I’m curious about how the paleo diet can be the definitive test and yet 50% will not feel any digestive issues with their aliment. Isn’t that why the blood test is actually the definitive test and not the paleo test? Or maybe the blood test from Cyrex is still a bit unproven.

    Would love to get some feedback as i take this information to my regular doctors to map out a plan.

    • Mary says

      The definitive test I’d your biopsy of the villi in your small intestine. The proteins in gluten attack and break down the villi which are responsible for absorption. If there is damage to the villi then Gluten is a very very bad thing. Thus you are defined as having Celiac disease. Or something like that! :-)

  49. Ian says

    The following is to inform of a less common gluten intolerance symptom and change of symptom over time.

    I had suspected gluten intolerance for years and had eliminated it for up to four weeks, to no effect. When I was forty years old, I decided to try at least six weeks gluten elimination. After five weeks of elimination, I was surprised to find that I could breathe through my nose. Removal of gluten completely eliminated my “allergic rhinitis” which had been with me since early childhood. Elimination of my allergic rhinitis also reduced my susceptibility to hay fever, asthma and dust mite allergy.

    Seven gluten and allergic rhinitis free years later I did a comprehensive food intolerance investigation according to the Australian Royal Prince Alfred Hospital protocol, supervised by an immunologist and a dietician. Part of this investigation was a gluten challenge. I expected a return of my “allergic rhinitis”. Instead, after three days of eating plain wheat products, the roof of my mouth became irritated, swollen and painful. This change-of-food- intolerance-symptoms-after-long- periods-of-abstinence phenomenon is mentioned in “The Complete Guide to food Allergy and Intolerance” – Brostoff and Gamlin. I know of no other reference. I have many food intolerances, but It is only with gluten that my type of symptoms have changed over time.

    • says

      Hi, kinda a late reply but I’m curious how you knew you were intolerant to gluten instead of simply having a wheat allergy? Is a gluten intolerance really just an allergy to wheat or are the two different?

    • cathy says

      I’ve known that I get an upset belly from wheat for years, so I mostly limit it, but am not completely gluten or wheat free. I know the more I eat, the worse the GERD and gas and bloating get. Over the past three + years, I have been really suffering terribly with stuffy nose, sinus infection etc, but really never saw any connection. However, just this evening, I had a hankering for cream of wheat cereal…2 packets and I am in hell right now with a terribly stuffy nose. I did not connect it then, but this also happened to me on Monday when I had it for breakfast.

  50. Hojon says

    My dad has a wheat, gluten & dairy intolerance.
    He is about 50, and it has only started happening about 12 months ago.

    He now very thin, lost heaps of weight and not very healthy. So going off it is not good enough. We need to fix the problem so he can start eating all this stuff!

    Please help guys!

  51. CJ says

    Started having 2 nonformed bowel movements (smelly too) each morning 2.5 years ago. I had no pain, cramping, etc. Seemed to be aggravated by coffee but I liked coffee so much, I blew it off as a reaction to coffee. I just did a stool sample test from DiagnosTechs & it showed a gliadin sensitivity, occult blood & inflammation in colon. So should I try the 30 day elimination test before I see an MD/colonoscopy? Also do I eliminate all of the cross reactive foods as well or only grains?? Dairy as well for 30 days? Thanks for input.

  52. Sammy says

    I have suspected that I have had Celiac for a while. My body seems to be reacting differently then the normal “rush to the bathroom.” Rather I will vomit and become constipated. I even had an endoscopy and the doctor said he took a biopsy because the celia in my lower bowel was stunted… He told me that this is a definate sign of Celiac. After the endoscopy I went gluten free. A rather normal reaction after the doctor tells you that what’s going on inside your body is a definite sign of Celiac.. They called me a week later and said that the biopsy came back inconclusive and that I needed to come in for a blood test. I did as instructed and the blood work came back normal… However, I had already been completely gluten free for a little over a week. Would that have affected the results? Nobody told me that I needed to continue to eat gluten…

    This whole ordeal has been crazy…. I am hypoglycemic, hypo-thyroid, and now I have to get my gallbladder out. When I got blood tests for my thyroid the doctor said something about the numbers being weird and that it was a sign of an auto-immune disorder… but nothing ever happened with that.

    I continue to eat gluten free. When I do have gluten my throat gets tight and I become extremely tired and fuzzy headed. I become irritable and my stomach instanly hurts. I still eat dairy but I am thinking that I am going to try and stop eating it.

    I am very frustrated with this whole thing. At least now I understand that this is not just me. I am not crazy but I am just upset with some doctors for making me feel as such.

    • David says

      Sammy, there is NO conclusive general medical test for gluten intolerance. If you are having negative symptoms from eating gluten, my advice is to go off it entirely, and stay off of it.

      Don’t wait for approval from a doctor, because there is a good chance that the doctor will be wrong.

      • Mary says

        I don’t think it’s helpful to those who are not in the health field to put down doctors. It’s imperative to be proactive in spite of our doctors and also vital to ask and ask questions, possibly politely confront if ne essay for clear answers and understanding. Trying to cure yourselves without guidance from at least a semi professional is unwise. It took me to a 3rd rheumatologist, a second internist, an allergist, 2neurologists, 2 surgeons, and dozens of tests to get properly diagnosed with several Autoimmune Disorders and treatment to make my life finally bearable. I credit the doctors. They wanted to help but didn’t know what was going on, so they would refer me to someone who might be able to. “Doctors are your friends” 😉

    • David says

      >> I am not crazy but I am just upset with some doctors for making me feel as such.

      Yes, Sammy, you are not crazy, and you have good reason to be upset with some doctors for making you feel as such. It is *ignorance* on the part of doctors for making you feel crazy.

      Sammy, there is NO conclusive general medical test for gluten intolerance. If you are having negative symptoms from eating gluten, my advice is to go off it entirely, and stay off of it. Many doctors, well-informed on food intolerances, would agree:

      Quoting Dr. Thomas O’Bryan:
      “You do a test, it comes back negative but you know when you stop eating gluten you feel better. And the doctor says ‘It’s OK to eat gluten the test is negative’ NOTHING COULD BE MORE WRONG … You feel better when you’re not eating gluten THEN don’t eat gluten.”

      Follow Dr. Thomas O’Bryan’s advice. Don’t wait for approval from a doctor, because there is a good chance that the doctor will be wrong, and your health will suffer.

    • Martha says

      I am a 58 year old, basically very well, very active and not overweight female with cronic low blood sugar, low blood pressure, gluten intolorance and an acute allergy to latex. I take vitimin D but otherwise no medications.

      Sammy’s symptoms (vomiting within an hour and a half and throat closing up) seem to match mine. Following eating anything with even trace amounts of wheat, I experience what seems to be very painful heartburn but it is really in my throat and jaws, into my ears. I also used to have chronic back pain that made it unpleasant to breathe at times and muscle aches, especially pronounced after strenuous work or play or drinking a beer, especially Coors, but not Bud, which is made from rice.

      I have been unflinching committed to being Gluten free for nearly three years, and have been relatively symptom free.

      When I accidentally eat Gluten, I vomit and am congested. Going out to lunch during a work day is a real problem as it seems resturant food isn’t to be trusted. A very small amount can trigger it, like non GF soy sauce, or flour as a thickening agent, hidden in a cherry sauce on a crembrulee.

      Now I find I am throwing up after eating steel-cut oatmeal which I did not expect to be a bad-actor. Does anyone else have a problem with oats? Does anyone else also have a latex sensitivity?

      • David says

        Martha, the problem with oats is cross-contamination; the oats can be contaminated with wheat in the field; in the harvester; in transport; in storage; and in milling, so much so that oats are generally considered unsafe for the gluten-sensitive.

        Safe is ‘pure oats’ — in other words, gluten-free oats. Only if oats are labeled gluten-free is the manufacturer guaranteeing their purity from gluten-contamination. Only eat oats labeled gluten-free.

  53. Ella says

    I was tested and found intolerant to many foods including wheat, dairy, sugar, most nuts, honey, some meats like bacon, fruits including green apples, mango, oranges, a number of veggies, and more. I am finding it really hard to stay off these foods as I live in the country with only a small selection of foods and do a lot of meals out (at friends/family) where sometimes the only things I can have are water and chips/potatoes.

    Obviously I find the diet hard to stick to so I usually have things I shouldn’t, in which case I end up tired, feeling sick/stomach cramps, dizzy, head aches zero energy etc. Any suggestions? Is there any way to somehow get rid of these intolerance’s or am I stuck with them for life?

    • says

      When I first went gluten free, I could not eat any of the following: wheat, corn, tuna, salmon, soy, all nuts, peanuts, apples, pears, peaches, beans, peas, tomatoes, eggplant, bananas, avocado, green peppers, cucumbers, chile peppers, pork, lamb, beef, tuna, honeydew melon, turkey, apricots, pineapple, carrots, green beans, and mushrooms. I had resisted going gluten free, but eventually tried it because I had given up all the other things on my allergy scratch test and was still getting hives, stomach upsets, etc. I also had horrible vitamin deficiencies. I was basically existing on dairy, eggs, plain chicken, white rice, potatoes and lettuce and broccoli. Within a couple of months of going gluten free, I was able to tolerate small quantities of all of the above except the nuts, and now that it has been a year the only thing I cannot eat (other than gluteny things) is cashews and very rare beef, and I have to limit quantities of soy and peanuts. My doctor says it is because my leaky gut has been healed by giving up the gluten. It is worth it to be gluten free to finally be able to eat again. Be very strict about the gluten though so things can heal up well.

    • David says

      >> found intolerant to many foods including wheat, dairy, sugar, most nuts, honey, some meats like bacon, fruits including green apples, mango, oranges, a number of veggies, and more

      May I ask you what tests were used?

      Many ‘tests’ are unreliable and unvalidated, This means that a lot of labs are selling tests that are not helpful. They can have both false positives (fingering a problem that is not there) and false negatives (failing to discover a problem that is there). Both false negatives and false positives are destructive.

      This could have implications for you: if these tests are not reliable, maybe you are not sensitive to all of the foods you list.


      The truth is that medical science does NOT have a way to reliably and deterministially detect food intolerances exclusively in the lab. This is not to say that lab information is of no use, but it needs to be properly and skeptically evaluated.

      The best way to test conclusively is by elimination diets. Gluten is often the Monster among the baddies.

        • David says

          I was talking to the original poster. I suspect a positive from a scratch test is significant, but a negative is probably useless. I for example don’t react to gluten in a scratch test at all, but am extremely gluten-sensitive; my reaction to gluten on ingestion is not even acute, taking several hours to show up, and days to weeks to resolve.

          I have read that IGG antibody tests on the other hand seem to produce false positives; and certainly produce false negatives–there have been people with actual celiac disease who have tested negative for gluten in IGG antibody tests.

          Evaluate all testing with caution.

          • Lauren Perreault says

            oops — that didn’t complete! I agree — my blood tests say I do not have celiac, though I have the genes and ALL the symptoms, including Graves Disease, a very itchy rash that sure sounds and looks like Dermatitis Herpetiformis, severe cramping, vitamin deficiencies, etc. Each doctor said I didn’t have it because blood test for antibodies was negative and biopsy was after I’d been gluten free for 2 months. The last doctor and the only one I trust anymore said “we can’t prove it, but I think you have it and if you don’t have it now you are most likely going to develop it within a few years. Just act like you have it and don’t eat gluten.”

            • David says

              Yes. And people have even been negative for celiac in antibody blood-test yet turn out positive for celiac in biopsy.

            • Leslie says

              Lauren, yes similar to you. I fall on the autoimmune scale was diagnosed with SLE at 29 was mostly asymptomatic mild to moderate joint pain and unexplained fever, butterfly rash and was only diagnosed when my 3rd child was born with Neo-natal Lupus very rare she was only the 70 case diagnosed world wide in the previous 40 years worldwide., She was ok no heart block did have low thyroid issues and was put on synthroid. My oldest girl was diagnosed MCTD at 15 and my youngest girl has no autoimmune problems whatsoever. My son has some stomach issues I hope he only is Gluten Intolerent because his uncle , my brother had Crohn’s disease in his early 30 . My symptoms progressed to severe light sensitivity and sicca symptoms, discoid lupus in scalp connective tissue pain, Osteocondritis in the cold weather vertigo from AID,(Autoimmune Inner-ear Disease) Hemolitic Anemia severe off and on, B12 deficency, better, D2 deficency severe and When my Rheumatolgist could not tell me what the weeping rash on my ankles was for over a year and a half (dermatitis herpiformis) I eventually put myself on a gliadin and gluten free diet at 57 and I stay strictly away from transglutaminase, nitrates, any red meat or chicken treated with growth hormone. Occassionally do a little grass fed lamb , or organic grass fed chicken, . Usually eat wild salmon once or twice a week, 3-4 organic eggs a week) and only do a little non NGO white cornmeal once and a while. I’m ok with organic potatoes,quinoa, rice- brown black &,red, tapioca starch and flour , and some white rice flour, + almond meal over a year ago because I remembered that I had been diagnosed when I first got my diagnoses of SLE with “anti-Rho SSA auto-antibodies”. I started looking up Giladin free diets( there is one on Livestrong.) By trial and error I figured out what flared me and what didn’t. I found out that I can’ t eat wheat, milet, buckwheat, rye, barley, amareth,and any oat even gluten free oats in any form. I do a lot of Middle eastern, South Indian vegan cooking. I only use organic coconut oil (Omega 3) or avocado oil to cook with and all that turmeric and cilantro, veggies and beans are very good for you high iron too! I can bake some things with in my dietary restrictions and I usually add flaxmeal (Omega 3’s) to my baked goods . I really like Good Karma brand unsweetened flax milk very high in Omega 3’s. What is really great is that my oldest daughter MCTD is following my lead and I got her on giladin/ gluten free diet 9 months ago. we both have seen less pain, my ankles healed up, less flairs less headaches,(we both suffered from migraines) less brain fog, a little more energy. My middle daughter went the non dairy and paleo route and has seen improvement too! I know all this autoimmunity is familial and on my mothers side. I’m not going to bother with with CE testing right now. I do know that for me and most likely 2 of my 3 daughters and maybe my son? a Giladin/Gluten free diet is for the rest of my life and I’m totally fine with that.

      • Ella says

        Thanks David,
        Not sure what it was I was tested by… involved a kind of circuit which included the food being tested in the circuit. I know a lot of people who use the same person… one of them showed up with no intolerance’s. I do know that since being tested over a year ago about the only things I can have on the list are onion and bacon.

        After being tested I went off everything for two months before getting tested again and the list was reduced a little. I had a blood test almost two years ago that was tested for allergies and it came back negative- I knew it was definitely not the case because I was feeling ill every time I ate certain foods. Apparently these tests only detect allergies and not intolerance’s.

  54. Paula says

    Hi Chris,

    I realise this comment is a long time after your initial post but I am interested in your opinion.

    I have just taken my 3 and 1/2 year old off gluten on a hunch. She is already 90% dairy free. Still has real butter. She suffers from constipation / incomplete bowel evacuation. And she has had this all her life. She was just tested for CD as she is very high risk for an auto-immune disease and came back negative. We have just started on a new laxative (prescribed) but after taking it for about 6 days and having absolutely no impact, i took her off Gluten on a hunch. Paricularily as she had come back as severly Vitamin B12 deficient with low iron stores. Within two days she was pooping like a trooper. In fact I am going to cut back on the laxative (slowly) and see if there is any impact.

    I don’t believe she has the typical symptoms for IBS etc. So I had never considered Gluten intolerance before I read your eBook on Leaky Gut. I had thought that GI only caused loose bowel motions not constipation so I am quite surprised at how much of an impact it has had. Is this common?

    Thanks Paula

  55. BB says

    I was such as believer that grains were my problem. I have been eating grains, dairy, soy, egg, and corn free. Still feels like my body is being attacked daily. Every part of my body. The only thing left it could be is Coffee and Japanese Sweet Potatoes, jeez what will be left.
    Last month I was told I had Schlorosis Lichen. Wednesday I go for a breast biopsy.

    I have been telling doctors there is something wrong with me since my twenties. I am only in my forties. In my opinion, doctors are getting richer, as we are dieing from their lack of care and knowledge.

  56. Patti says

    I was tested found to have allergy to wheat. I have Hashimoto’s thyroiditis. I cut wheat out but continue yo struggle with inconsistent thyroid blood levels and my weight and inflammation fluctuate. After reading this I think I need to cut gluten out see if I improve. Can a wheat allergy mask gluten issue?

  57. rick says

    I am what they call NCGS, dairy, corn, soy, oats, all grains, nightshades, all sugars(sucrose,lactose,glucose,dextrose, sucralose….) MSG, aspartame, eggs, meats fed sugar or GMOs, chicken that has been injected with milk or washed in chicken broth, soaps, spices(need to grow my own due to cross contamination all had to be removed from my diet. CD test resulted negative, need better testing….

  58. thrisa Murphy says

    Went tot he beach with a gluten intolerant child…had no gluten, felt better. Stayed off for 7 days. Came home, ate some bread, headache, fatigue, mental fog, bloating, intestinal pain. Have been gluten free for 7 months. Started going down hill about a month ago, ear pain, tired, no energy, then swollen lymph nodes with almost constant ear pain/pressure. Took one round of antibiotics, felt better. The day after I stopped, lymph nodes again swollen, sore throat and ear pain. Eliminated.dairy 3 days ago. Lymph nodes down (not quite back to normal yet, no ear pain, energy level is back..

  59. nickc909 says

    Biggest problem for those with (previously) mild Gluten reactions is after you go glutenfree for a period when you inevitably get “glutened” (usually when eating food not prepared yourself) and the reaction to the gluten can be far stronger than any discomfort you had before so you are left with the following comparison:

    – before glutenfree: regular GI discomfort but not long lasting or overly unpleasant and you get to eat cake / pancakes / bread etc. and can eat out in restaurants easily.

    – after glutenfree: eat out rarely (reliance on resataurants tiring, is hassle and too risky), home prepared food is ok but tough to make it interesting without a lot of effort to build new skills and basically goodbye to lots of fun foods. But 95% of the time you feel good, have no GI issues and using the toilet, ahem, is a more pleasant experience. However after a long period of living the glutenfree life when you get glutened either by dodgy labelling, restaurant incompetence or inconsideration or falling foul of meals at parents / friends / family who just don’t get it then it’s a horrible experience (12-24 of GI unpleasantness that’s far worse than it used to be before).

    So what do you pick? To be honest if I could go back in time to the point where I went glutenfree I’d stick with eating gluten and having the mild symptoms often and being able to eat out without interrogating the waiter and being able to eat bread and cakes (and ice cream without worrying about “stabilisers”) and also once you go glutenfree either there’s no way back (see being glutened above) or it’s an unpleasant journey back and maybe your life won’t return to the way it was.

    Obviously my regret at choosing to go glutenfree is based on the context of my life, the value eating out and eating cakes and breads has to me and the mildness of my original symptoms and the extreme increase in the symptoms I now get after being glutenfree for a while when I get glutened.

    • David says

      Nick, are you aware that if you are gluten-sensitive and you are NOT gluten-free that you are quite likely, and if you have celiac disease certain, to be doing all sorts of scary and insidious damage to your body long-term? Does this enter into the equation for you in your regrets about choosing gluten-free?

      • Becky says

        I hear Nick loud and clear, and agree mostly, if I could go back. I was not celiac, but my Hashimoto’s antibodies disappeared when I stopped wheat. Nary a digestive symptom, but an autoimmune condition.

        However, it is becoming clearer to me each day, and thus easier to bear the reality of it, that restaurants usually offer you the cheapest of meats and oils, and after a time of eating “clean,” these really don’t appeal. Higher-end restaurants use better products, and often de-emphasize the empty “fillers” of bread and pasta in favor of more creative and nutrient dense foods.

        Still. Of course we all miss the yummy stuff. But there is a larger truth. The world would like to pretend that food is just food. When you discover that food can heal, and food can hurt, you know you’ve found out something important, but it feels like swimming upstream in our present culture.

        • nickc909 says

          I think what I’m trying to say is that I think I’ve made myself more intolerant to gluten by going glutenfree. Not sure it was a good idea.

      • nickc909 says

        Feels like far worse damage occurs when I get glutened now. And it affects my life far more, ok less frequently but takes me a couple of days to think about eating again and I can do no exercise in that period.

        Impossible to know which scenario is more damaging.

        • says

          I sometimes think this effect must be because your body is so damaged previously to being gluten free that things are numb, but then after they start to heal it is like a fresh wound. I do wish that they could develop a test for Celiac that would not require eating gluten, though. I went gluten free before my biopsy not knowing that this would affect tests, and cannot bring myself to try it again, but wish I knew if I had Celiac or intolerance. I try to be careful, but if I knew I had Celiac I’d be a little more scrupulous I guess. I do have the gene, though and have a great nephew who was diagnosed Celiac, so I’ve been gluten free for 20 months now.

        • David says

          Nick, I agree with Lauren Perreault here. It is true that the experiencing of ‘glutening’ is mor *acute* when you are gluten-free for a long time. But it is probably a huge mistake to believe that you are ‘better off’ taking gluten chronically.

          There are other cases when a strong negative reaction is indicative of a more *healthy* body: cigarette smoking. If a non-smoker with a healthy lung smokes a pack of cigarrettes, they will cough, get sick and inflamed. This is not so much so with the regular smoker.

          I take gluten-sensitivity so seriously that my goal behavior is *never* getting glutened. This means sacrifices–for example, I trust almost no restaurants and largely don’t eat out at all any more. But to me, not being glutened is worth it.

  60. Cynthia McLaren says

    I should say that it does not look like Dermatitis Herpetiformas, as it is not circular bumps and blister. Instead my skin is red in long lines where the bun touched me.

  61. Cynthia McLaren says

    I am gluten intolerant and have been basically off gluten for 3 years. My adrenal glands were going into shut down and I was sick all the time and had no energy. I felt no intestinal problems whatsoever. It took about 2 years off of gluten to regain my strength.

    Yesterday a strange thing happened. I reached into a bag of frozen gluten free buns, that I had never tried before. Within 10 minute a red rash and welts appeared on my hands. It is painful and did not go away overnight. The buns were from Whole Foods and said they were made in a gluten free facility. I did not eat the bun. Ideas?

  62. Kasey says

    I have hashimoto’s and have tested positive for antibodies associated with every form of wheat and every form of dairy. I’ve also realized however that I feel much better when I cut out all grains. I’ve recently had a big flare up in Hypo symptoms prompting an increase in medication. This is primarily because I convinced myself that my body could handle any gluten free grain and whey protein. Within about a month of this, I was battling serious fatigue, insomnia, truly unbelievable fluctuations in water weight (10 pounds overnight), breakouts, mood swings, etc.

    Two weeks free of dairy and grains and I’m feeling like a new person.

  63. Ralph Hutton says

    Suspect gluten or wheat intolerance,but, coffee also affects me. Normal or decaf, both have the same effect. Black with no milk, is the same. However, I have cut out coffee as well, but, I think milk or dairy is a problem. Milk,yoghurt are both suspected, but not cheese.
    This is over quite a few years of ups and downs,so, not a shot in the dark.

  64. Amy says

    Chris, I was diagnosed with Lupus in 1999 and had a flare involving my kidneys in 2007. After being treated for 3 years with standard medicine I chose to try alternative. In the past I was able to juice fast and get great results. I had some strong detox from I assume the medications I had taken, but I had severe rashes on my legs, arms, face, and back. I did a 14 day water fast and then ate vegan only to feel worse than ever. I felt so deficient. Shortly after the water fast I watched the Gluten Summit with Tom O’Bryan. My paternal grandmother had Celiac Disease. I don’t have most of the digestive symptoms, mostly skin rashes. I bought your book Your Personal Paleo Code and will start the 3 steps soon. I’ve already stopped gluten and am trying to get a simple diet plan that will be easy to follow. I will also be eliminating eggs and I already stopped most dairy other than Kefir, Grass Fed Butter and Feta. Since my water fast I have had burning and itching on my scalp. Any idea what is causing it or what may help? Thanks

  65. Mila says

    Hi Chris,
    I am a french journalist, and I am very interested in this topic. I am searching scientific studies related to gluten and Hashimoto desease. Would you mind giving me a reference.
    Thank you.

  66. Enka says

    I have been trying to find out for years and years what I have, leaky gut, celiac, lactose intolerance or maybe something different. I am bloated or constipated, with lots of gas alomost everyday, even without eating gluten. Sometime I have an impression that even after drinking a glass of water am filled with smelly gas and bloated to the point that I can seat, walk. I’ve been struggle with those symptoms for more than 5 years and visited numbers of doctors offices without any concrete information. I also have an issue with headaches, back pain, acne, hairloss, insomnia etc. As am health coach its really embarassing for me to have all those symptoms and teach people how to live healthy lifestyle. It’s just very hard to struggle with all those symptoms and feel like you stuck and there is no help out there. Am education myslef thru different sources. I listened gluten summit, bought bazillion books about immune diseases, gluten intolerance, did some online programs, started making my own fermented foods etc. Thing is am based in Prague, Czech Repbublic country of gluten, meat and dairy and no functional specilist here, no open minded doctor to support me in my struggle. So I am educating myself in order to find solution.

    • mhikl says

      Enka, one thing you might start using, if you are not already, is homemade fermented foods; full complex Sauerkraut is so easy to make. I have a quarter cup at every meal and use it for a pick me up with my beer—any little excuse, eh?

      Even on Ketogenic Paleo I had problems similar to yours, but within a few days using my living Sauerkraut (never boil or pasteurise—don’t use commercially made—nothing living there) the extremes were ended—I’d almost forgotten what being regular was like.

      I go for a deep ferment where there is very little if any sweet left before I refrigerate it in litre bottles. My improvements were obvious within a few days. It then takes a little time for full constancy to be the norm.

      Also the elimination of all carbs, for say a week, with higher amounts of natural animal fats (home rendered lard and beef tallow and suet, butter, coconut oil) might help as well. Then slowly you can begin to add in some friendly low cal carbs—some lower sugar fruit, occasional root vegetables. Nix all grains for a few months at least and totally banish glutens and corn/maze. Then you can experiment to see how your body responds with additions back into your new menu.

      In a four litre pickle bottle I add to my cabbage, a julienne (thin) sliced beet, large chunks of a whole fresh pineapple, a TBS chia and flax seeds, berries, and fresh herbs to my kraut, anything that might feed different kinds of flora that will thrive in the bowels. A few TBS of whey, kombucha and kefir and other fermented cultures may liven up the party down below—you want your friendly bacteria to all be on good terms. I use a bit larger amounts of Celtic sea salt than the tepid moderns do today. I have no fear of quality salt.

      Dr K has a recipe on this site with carrots and ginger that I am going to try as a sweeter, lighter fermented treat. I may branch into a beet and ginger concoction as well. I have become a Sauerkraut connoisseur, or nut—the High Priest of the Kraut. (Hadn’t thought of adding some crushed walnuts & Brazils to my mix—let your emanation run wild. :)
      Namaste and care,

  67. DianeMich says

    My son started having extremely lower intestinal cramping in September. Happened once every two weeks. As the months went on, it got worse, occuring a few times a week at the end. We were seeing a pediatric Gastro-ent who believed it was constipation, despite my son moving his bowels daily. As the pains got worse, I insisted on a colonscopy/endoscopy. They saw several spots of inflammation exactly where y son is pointing to (middle of the intestine area, right above your pubic hair). Turns out they were lymph nodes. Nothing came out of the testing except Lactose intolerance. My husband and I are convince my son is not constipasted so took him off Gluten and Lactose. Symptoms improved but not gone. He gets the pains about every 2-3 weeks. Some times it is traceable to ignorance (didn’t know something had gluten) but other times we have no idea. No visible gluten eaten. Anyone have symptoms like this?

  68. David -- from Ireland says

    @Tracy, I could add:

    Quoting Dr. Thomas O’Bryan:
    “You do a test, it comes back negative but you know when you stop eating gluten you feel better. And the doctor says ‘It’s OK to eat gluten the test is negative’ NOTHING COULD BE MORE WRONG … You feel better when you’re not eating gluten THEN don’t eat gluten.”

    That bears repeating:
    “You feel better when you’re not eating gluten, THEN don’t eat gluten.”

    This is the standard I propose applying to your child.

    Do a right test, keep him TOTALLY off it for a period. Do proper research into what it truly gluten-free. No candies. No processed foods, etc. Ideally through this time, take precautions so he can’t ‘cheat’ on a play-date either, you know some kid giving him candy.

    • David -- from Ireland says

      >> Recently saw a pediatric gastro and he said if he had celiac disease he would not react that quickly to it and to try an allergist.

      ** ABSOLUTE NONSENSE!! ** I am surprised to hear of a specialist saying such a thing, and I am wondering what his sources are for such an idea.

      I myself react by bed-time usually when glutened during the day. There is lots of information and experience on this, and it is well known that celiacs/gluten intolerants can react very quickly to gluten, some faster than me. See:


      >> Could my son be in the early stages of celiac disease or just be intolerant and

      Yes, but I believe it is a mistake to consider gluten intolerance not to be serious.

      >> how do I find out if it is wheat or gluten intolerance.

      Unfortunately there is no known way right now, except the ‘better if you’re off gluten test’.

      • Tracy says

        Thank you for the information. I didn’t mean anything by saying “just’ intolerant. i have been lead to believe that intolerance to gluten doesn’t cause damage to the body like celiac does. The poor little man has started a regular diet (since Sunday) and has had stomach pain since the start and diarrhea yesterday. Now he doesn’t want to eat anything because he says it will hurt his belly. Off to the allergist on Thursday and calls in to the gastro and his pediatrician. Definitely not going to make him do this much longer. Gastro had recommended 3 to 6 months before a blood test. NOT happening!!

    • DianeMich says

      New to the gluten intolerance so can you clarify what you mean by no packaged foods or candy and truly gluten intolerant. I am trying to read labels and it if doesn’t say wheat, oats, etc. I am assuming it’s gluten free. Are there other words I should be looking for?

  69. Tracy says

    My 5 year old son has been dealing with constipation and diarrhea since September 2013. At first we were told it was because he had just started school and was nervous about having a bowel movement at school. We used laxatives to clear things up and he seemed better for a little while. Then again in March back to the doctor because of stomach pain (very often complaints) but still having daily bowel movements. He was tested for celiac as my oldest child has CD and his test was negative. I decided to put him on a gluten free diet. Two weeks after starting he came downstairs one morning with a big smile on his face and said, “Mommy my belly doesn’t hurt!’ At times he was accidentally glutened and would have stomach pain the following day and seem lethargic. Recently saw a pediatric gastro and he said if he had celiac disease he would not react that quickly to it and to try an allergist. Could my son be in the early stages of celiac disease or just be intolerant and how do I find out if it is wheat or gluten intolerance.

    • David -- from Ireland says

      >> Recently saw a pediatric gastro and he said if he had celiac disease he would not react that quickly to it and to try an allergist.

      ** ABSOLUTE NONSENSE!! ** It is frightening to hear of an apparent specialist saying such a thing, and potentially dangerously misleading you.

      I myself react by bed-time usually when glutened during the day. There is lots of information and experience on this, and it is well known that celiacs/gluten intolerants can react very quickly to gluten, some faster than me. See:


      >> Could my son be in the early stages of celiac disease or just be intolerant and

      Yes, but I believe it is a mistake to consider gluten intolerance not to be serious.

      >> how do I find out if it is wheat or gluten intolerance.

      Unfortunately there is no known way right now.

  70. Dawn Carroll says

    I too have most all symptoms of gluten allergies…but have tested negative with the standard testing.
    I don’t drink processed milk or eat processed yogurts. BUT I can drink raw milk straight from the local dairies.
    If I don’t watch what I eat and get into something with sugar & grains in it I ache like crazy.
    Symptoms range from small watery blisters on hands, overall body aches & pains, constipation to what seems like total elimination over a period of a few hours, sharp shooting pains everywhere, headaches, sinus congestion etc…
    So simple single ingredient foods is what I have to strive for. Meats, eggs, veggies, a few fruits like tomato’s, cheese’s (I can do these), avocado’s, olives, granny smith apples, lemons, limes, & black berries.
    It is a struggle not to succumb to chocolate candy bars…etc but I know I feel better over all when I don’t follow my urges to stray.

    • bb says

      Your story sounds identical to mine, down to the hand blisters! They were the first big thing I noticed back about 2005. Prior to that I was given repeat antibiotics for three years for ear infections. I than notice a fluttering feeling in the left side colon area right below the ribs. This feeling is now an entire sore feeling those reaching the right side near my hip bone. If I eat Gluten, I get achy and my stomach will feel like electric shocks, will end up effecting my back. When I eat anything wrng, I now get little bubble/pockets popping out from my intestines.
      Since my test came back negative and it also involves any thing with sugar to lesser degree, it seems like Candida is more like what is causing this.
      How are you gums and teeth. I am afraid I will have nothing left to eat soon because I am down to meat, and veggies. Just realized fruit is also causing symtoms.
      Doctors are NO help. Getting pretty scared.

  71. Rachel Pearce says

    I was diagnosed as a Coeliac in 1977 when I was 11. I appear to be able to tolerate some gluten but of course I am not sure what is is doing to me inside. I was strict from the age of 11 to about late 20’s I suppose and I tried some gluten and there was no reaction. Since then and occasionally I have gluten – probably once every 2 months without reaction. I am not sure however if this is bad thing? If I was on holiday in Greece for example I really enjoy a Mythos beer and If I have one I am fine but should I? How often could I get away with having any gluten?

    • says

      If you were diagnosed with Celiac you must NOT eat gluten. You might feel fine, right up until you are diagnosed with esophageal cancer or stomach cancer, etc. The damage that is done to your intestines when you have Celiac and consume gluten is sometimes hidden for many years. Please be more careful — you will be glad you did when you are older and are still healthy!

    • says

      When eating gluten or other cross reactive foods you are sensitive to, it causes stress to your body. Which can affect your adrenals. Even more so if you are experiencing other stressers at the same time.

  72. Kristen says

    Anyone experience muscle twitching? That was my main concern, along with severe bloating, before I quit eating gluten. Since eliminating gluten muscle twitches (all over body, all day, every day) have stopped almost completely. Saw improvement within the first week of GF diet. I still get small ones occasionally but maybe that’s due to another intolerance. Will start with dairy to find out. (Don’t want to pay for Cyrex tests yet.)

    • sonata says

      Hi Kristen,
      I am listening to the cd’s of the book ” Grain Brain” by David Perlmutter, neurologist and nutritionist in one, the only one in the country.
      He talks about muscle twitching and other bodily issues asociated with gluten sensitivities and diet high in carbohydrates. It is an amazing book full of incredible, clear, scientific info. Please check it out, it will answer most of your questions.

      • Kristen says

        Hi sonata,

        Thank you, I actually have that book on hold at the library and need to go pick it up. Dr. Perlmutter is the one who convinced me to give up gluten. I was at my wits end thinking I had some horrible illness when I saw his program on the PBS fund-drive special a couple months ago. I made the gluten connection to my problem when I saw the video of that poor kid convulsing, and then his full recovery. (You can see it here at 1:02 and 1:15: http://www.doctoroz.com/episode/diane-keaton-her-eating-disorder-confession?video_id=3547191046001.) That convinced me that I had to try eliminating gluten.

        I guess I was looking to see if others here have experienced twitching and whether they have also recovered.

        • says

          I had peripheral neuropathy (tingling, numbness, a feeling like my heels had an animal breathing hot breath on them) until I gave up gluten, and then this all resolved. I am NOT diabetic.

  73. John says

    As NCGS may have no apparent symptoms, what would a gluten challenge show? When I was 18 and getting interested in booze, one beer would provoke diarrhea. That went on for a few months, and then no such problem ever after. Was that a symptom of NCGS that resolved, or that has been masked somehow for 50 years? Or something else entirely, like alcohol toxicity? If there is no obvious symptom what is the challenge going to change? In other words, how can the gluten challenge be a good test for NCGS if there is no discernible effect?

    • David -- from Ireland says

      John, what would a gluten challenge show in NCGS?Unfortunately, right now we can’t answer that—a gluten challenge will not diagnose NCGS. A gluten challenge followed by biopsy of the gut is currently the only definitive way to test for celiac.

      Your experience with beer mirrors mine with bread — when I was younger I could notice something ‘in my head’, a change of consciousness, not pleasant, after eating bread. This disappeared eventually, but no, my gluten sensitivity did not go away. Gluten intolerance plus gluten was insidiously giving me depression eventually, but I had no idea gluten was involved. Gluten was giving me depression, but I noticed nothing mood-wise after ingesting it. However it was giving me depression, it was not ‘acute’ but ‘chronic’. Possibly, it is autoimmune, and my brain was being attacked by my nervous system under the influence of gluten.

      One of the problems with gluten intolerance, which contrasts with an allergy, is that once you are in steady-state toxicity, eating gluten regulary, you may well notice *nothing* when you ingest gluten. In contrast with this, if you go gluten-free for a long time, then you may indeed notice symptoms after eating gluten.

      This sounds odd, but it has parallels with cigarette-smoking: a nonsmoking person with a healthy lung will cough a lot if they smoke a cigarette. When they smoke regularly from the cigarette, they do not cough. Coughing is *one* of the reactions to the smoke, and this one goes when it is taken regularly. This does *not* mean that the cigarettes are doing no harm.

      • says

        I have experienced depression also when on wheat. I didn’t notice before going off wheat. I noticed it when I went off and when I would get some wheat from cross contamination when eating at a restaurant. I noticed how tired it would make me, and I would feel depressed.
        I went off wheat as a test because I was experiencing such gastrointestinal bad effects I needed to do something. I thought I was eating too much salad or fruit. Finally I tried going off wheat. I really thought I was dying because of my symptoms. So I was willing to try anything. I felt so much better that I just stayed on a wheat free diet.
        I did eventually get tested for wheat allergy but returned negative and said I had a sensitivity to wheat. I was contemplating going back on wheat because it is expensive and because I had my gall bladder out and my husband thinks my problem with wheat stemmed from that. After reading this article I am reconsidering. I had forgotten about how one of the symptoms was depression. Don’t want to deal with that again.
        Thank you for sharing!

  74. Sonata says

    My comment wasn’t posted so I decided to correct all the grammatical errors, hopefully it will be accepted this time.

    I have Hoshimotos Thyroiditis. My immune system attacks my thyroid gland. My immune system flairs up when I eat gluten, or certain grains that have similar proteins to gluten, like corn, various nuts, coffee, gluten free chocolate(!), sorghum, tapioca, most foods on the gluten cross reactive food list. They make gluten free cookies with tapioca that can make one as sick as eating wheat!
    I suffered from extreme fatigue two and a half years ago and I just knew I had a thyroid issue. I did enough research and found a doctor who treats his patients with diet and does some proper testing through Cyrex labs.

    I did not want to take pills, treat the symptoms and ignore the cause of my problems. I was losing hair, had muscle aches, couldn’t sleep, I was drenching in sweat while asleep; many many bad symptoms. The worst was the lack of energy. I had to eliminate all the grains, dairy, night shade vegetables which may cause inflammation! I had to replace coffee and green tea with the black tea. That’s to do with the thyroid T1 and T2 levels.

    Nine months after my super strict diet my sleep was perfect, my hair started to grow and was shiny, my energy came back. For the last two years I’ve been feeling like a newborn! As a rule I haven’t been eating gluten for 17 years since I came to US, but I admit to occasionally cheating on gluten. I was getting itchy and getting a lot of pimples, in turn taking anti histamine pills to calm the reaction. I still got myself to the point of contracting Hoshimoto’s even after avoiding gluten for such a long time. Gluten is no joke. Although I was eating healthy prior to my treatment of a very strict diet, tests revealed I had high acidosis, vitamin D levels extremely low, vitamin B 12 low, deficiency of vitamin d, low on magnesium, high inflammation, reactive hypo-glycemia…All the tests came out normal after nine months of a strict diet. I can never get rid of Hoshimoto’s or reactive hypoglycemia, but I can keep it under control.

    My mother has rheumatoid arthritis which is an autoimmune disease. She did some testing for celiac disease in UCLA an the results came out negative. Then I took her to the same doctor who treated me and voila! It was discovered she had Hoshimotos Thyroiditis, inflammation of the brain and myriad of other issues. She got on the same strict diet and then got tested at UCLA 6 months later. Her inflammation tests revealed the lowest inflammation in ten years! They did not know why, so I told them she was on the special diet. Her doctor dismissed it as a quackery, but the proof was her otherwise unexplained improvement!! I have seen the proof, my mother and I are both testaments to the truth of diet having a profound affect on or health.

    I hope I didn’t take too much space and I that this information will help someone to change their life through some dietary choices and a complete elimination of gluten! Cheers!:)

    • Bb says

      You symptoms sound like mine, story above.
      I have suspected Thyriod most of my life, 43 now. Mother, sister both Hypothyriod.
      So far I have low T3 but now TSH and so forth.
      Can you eat fruit?

      • Sonata says

        There are so many things involved in Hoshimoto’s , in most cases low thyroid patients have Hoshimoto’s but they don’t get proper testing to diagnose Hoshimoto’s, so they keep feeding pills . Most doctors treat the symptom, not a cause. My friend has a low thyroid and every year she had to increase her pill intake, because her symptoms were getting worse and worse. Finally she went to the right doctor and resolved all of her issues with dietary changes and immune system supporting supplements. She was finally diagnosed with Hoshimoto’s.
        Yes. I eat fruit , but not as much as I used to. I try to keep my sugar levels balanced.
        There are few things that need support in the body:
        immune system, central nervous system, digestive tract, endocrine system. All of these parts need to be checked, addressed and supported.
        Chris Kresser posting are great, very informative. Please read postings by Datis Kharrazian. He is very advanced in Hoshimoto’s treatments. I went to Dr.Gil Kajiki in Tarzana, CA. He has some youtube videos. Also there is a great website called http://www.stopthethyroidmadness.com/
        (there is so much educational info on thyroid and the mistakes that doctors make when diagnosing their patients. )
        This video is basic info, but a great one:
        My diet was ZERO gluten, no night shade vegetables, no grains, no nuts, no coffee, or green tea, low glycemic index fruits, like everything that has a pit in it. Anti-inflammatory diet. It took me a few months to start feeling great, but it was all worth it. I used vitamin D supplements, Oxicell ointment, gut healing supplements, adrenal support supplements, vitamin B12….You need proper diagnostics to see what is really happening with your thyroid and immune system. Regular doctors run very basic tests that show nothing, or they miss on the markers that are very important. I hope it helps!:)

        • Tailor says

          Hi Sonata

          I was wondering if you could please please give me more info into Dr Gil Kajiki.
          I am a hashi patient diagnosed since I was 13. I’m only 21 and my symptoms have deteriorated. Hair loss, muscle aches, brain fog, constipation the list can go on and it is not pleasing.

          I had my free consultations with the Dr and I am deciding whether to commence his protocol. What is your advice? His patient reviews on youtube/his websites seem extremely promising! But $000’s just for advice and a diet plan?! Hmm

          I look forward to a honest just reply :)

      • sonata says

        Yes, I can eat fruit, mostly the ones with the bone it. These types of fruits are on the low glycemic food list.

    • Bb says

      Have thinking surely this had to be Celiac/Gluten Intolerance, today I am questioning it once again.
      Did you have any skin, gum, witish/grey tongue?

      Even though I was still eating sweet potatoes and drinking coffee and having two pieces of fruit per day. I just felt there had to be more to it because I even recated to Peter Osbornes vitamin C that is truely Gluten fruit. It contained Palm sugar. I noticed when I would try to bake gluten free and used Coconut Negtar that I would react.

      I am now wondering if what I have is really Candida. This is very frustrating because it is ruining my health and mouth. No doctor will listen. I have spent alot of money looking into everything and finding nothing. Even stool tests come up negative, a blood culture. I know I have Hashimotos because I have just a TPO of 15 and Thyroglobulin of 45. Can Hashimotos do this kind of damage to my mouth. It feels like my gums texture is falt and slimmy.

      • sonata says

        It could be that your immune system is atacking the gums.
        You need to do some proper testing.
        You need to start anti inflammatory diet asap and find the doctor who can read the blood markers that the other doctors can’t. Regular doctors won’t even run the proper tests because they always choose the very basic ones, the cheepest tests that show nothing. Unless you are on one end of the extreme or on the other end of the extreme , they will call it normal. No problems found, go home and take a chill pill.
        Please check dr. Gil Kajiki and dr. David J Clark. Watch their videos on youtube.
        I hope it helps!

  75. Julia says

    I’ve had tests for Celiac done and they came out negative. It took me another several years (and a move to Italy, the Heaven and Hell of Gluten) to finally realise that I have severe the intolerance. The thing is, I was bloated and severely constipated (bathroom every 3-4 days) since I was at least 8-9 years old, if not longer. No one has ever told me it’s not how you’re supposed to feel, so I didn’t know better. Gluten-free now for 1+ year and at least one of the problems went away. I’ve recently found out about FODMAPS and suspect I might have that since there are so many other foods that cause sever bloating :/

  76. Lisa says

    I was diagnosed with Celiac a little more than 2 years ago and welcomed the changes in my diet just to feel better. Unfortunately, it only lasted about 6 months and then may body started shifting. I continue to gain weight especially around the middle/waistline, and now all foods seem to bother me or cause reaction. I cut out coffee, tea, dairy and all wheat, barley and rye and still I bloat, get gas and have pain after I eat just about anything. Eating isn’t fun anymore now it’s a chore. I feel like I look 9 months pregnant weather I eat a cup of brown rice or have a potatoe. Having another endoscopy tomorrow to see what else could possibly be going on. Any insight would be great. Help!

    • BB says

      Hi Lisa,
      Did you have a positive Celiac test? Would you mind sharing an update with your progress. I am in the same situation. Feel I might be reacting to any form of sugar now.

      Thank you

  77. BB says

    To Danielle,

    Most like the doctors will not have any idea what is wrong with you.
    I cannot tell you how many I’ve gone to. I actually canceled my insurance because I felt why pay people who are doing nothing for me. I continued to go for a while paying “top” doctors cash, in my area only to find the same thing.
    My story in short, lol is above. Hope you can make it through all the miss spelled words I later noticed.
    I don’t know how I connected mine symptoms to Gluten but in my research I think Dr Peter Osborne may have the best explanation of what is going on. He says all grains have proteins simular to Gluten that the body of a Gluten sensitive person can respond to. I thought for the past 20 I was lactose intolerant. When I got my food sensitivety test results back Casein in dairy was at the top of being the worst reaction, along with dairy, eggs, soy and pecans. I even cannot have things that were low reactions like Wheat, Gluten, honey and anything derived of corn. Including my vitamins. Just about all vitamin C in supplements is derived from corn.
    The only way I feel symptom free is eating only whole foods, grass fed beef, organic chicken, fruits and veggies. The longest I have made it has been four weeks. It is not easy.
    You are lucky in that your reaction is felt right a way. Mine is felt most four days after. Everything gets better if I eat clean for another 2/3 weeks. Than I start to feel amazing enough to shortly after blow it all over again.

    PS. I would highly recommend Peter Osborne. He does phone consultations if you are out of area. This was what I did in Dec. I was already up on what he was going to tell me from my own research. However just taking his IGg and Gluten Shield, along with his vitamins I have been able to get rid of a pain in my left side/colon area, if I keep a clean diet. He is booked out a few months.

  78. Danielle says

    I removed gluten from my diet in February after an elimination diet showed I was gluten sensitive. My symptoms after eating gluten are gastrointestinal pain, bloating, and headaches.

    So I told myself this was a gluten sensitivity and have tried to remove it from my diet, but now I’m having more problems. In the past three weeks I’ve eaten white rice two times. The first time a piece got stuck in my throat, I immediately began coughing and snorting to try and remove it but I could feel that it was stuck, the next morning I woke up with a severe sinus infection. After three days the piece of rice came out of my mouth, but the sinus infection symptoms lasted for 11 more days–thats how sick I was. About a week after I was better I had white rice again. Nothing was stuck this time, but immediately upon finishing the meal I started coughing uncontrollably, my throat felt scratched. I woke up with another sinus infection.

    I drank cow’s milk last night, probably more I usually would. I had some after dinner and woke up in the night coughing (still getting past that 2nd sinus infection) and in a rush in the middle of the night I drank more milk. This morning when I woke up I was nauseous and had stomach pain which turned into diarrhea. Which is unusual for me. Almost as if I’m lactose intolerant??

    Until reading your article I was thinking that something was seriously wrong with me. But now I’m wondering if this is all linked to gluten allergy.

    I haven’t been tested for CD. But maybe even if I was I could have NCGS? And I’m worried if I go to a traditional doctor they won’t have the tools to really help me. What if they’ve never heard of NCGS?

    Any thoughts?

  79. Deb says

    Yep, I get the white tounge thing too. Assuming it’s to do with candida. Tried treating it but it comes back if my body decides I’m taking on too many sugars or I get stressed sadly.
    Tried again to talk to my Dr about all this but she told me that the blood test she did was conclusive and that even tho I was on a gluten free diet when she did it that it makes no difference. She dismissed my swollen joints when I ate cake recently as being unrelated. I am also suffering with similar reactions to medications (inc herbal), any green leaf veg/salad and a host of others but these ones stand out right now. A gluten free, pain killer free, green leaf free diet has helped and I am better than I was but I am still trying to find the cause for the continued symptoms. Think I might be alergic to my heart tablets ….but how do I stop taking those?!!? My Dr is VERY unsympathetic and because I’ve been ill all my life, despite a diagnosis of FMS, ME and CF from a specialist consultant, I seem to have got labelled as a hypochondriac. I breaks my heart to see my husband watching me and getting sick himself with worry while Drs tell me it’s all in my mind. It’s been so much worst since I’ve been menopausal. I’ve tried HRT, but due to all the negativity towards this treatment it seems most GPs know very little about it and are most reluctant to prescribe it. My Drs have messed me about with it SOOO much I am now starting to react badly to this medication as well. It’s almost as if my body is learning what’s hurting it and rejecting everything that looks even vaguely like it! Shame tho because when I went on the HRT in the beginning I felt so much better and I was almost able to come off my heart medication (AFand PVCs) Soap Box moment here …if heart disease is the biggest killer of women and the chance of getting it goes up considerably with menopause (and I’m already showing signs of it) why are Drs giving me grief about a 4% increase in the chance of getting womb cancer when taking HRT?

    • says

      You need to see a functional medicine specialist. If you live in Los Angeles, I highly recommend Dr. Sam Rahbar. If you live elsewhere, google functional medicine and see who you can find that has good reviews. They are trained to take these systemic complaints seriously and not treat you like you are crazy. He has helped me so much and I feel 10 years younger.

  80. David -- from Ireland says

    Hi BB, interesting to hear you get white tongue too. I wonder if it is prevalent in people who have gluten intolerance, or if it is a minority symptom.

    Do you know if you also get white tongue from a strong fever like cold/flu?

    My ‘white tongue’ is not extreme, more like gray tongue, a sort of greyish off-white tongue. Very noticieably different if you know my normal pinkish tongue. When I get it, I do have it during the day too, but one of the best times to assess it is in the mornings because there is no interference from recent eating.

    • BB says

      Mine is just as you describe, white/gray. Saliva feels thick. I actually went to see if I had mouth/throat cancer when this first happened becauuse when it started it itched/burned.
      Don’t notice that much anymore.
      The only improvement I’ve had since this began is I don’t get sick anymore. So I would know about it while being sick.
      Last Thursday I went out my gluten free diet. Always around the fouth day my symptoms peak. Today is the fourth day. Another thing I noiticed after eating enough Gluten, is that I feel like I never ate. Always hungry until being back on the diet for about three weeks.
      For those that say NCGS is different than Celiac. Not true, my test was negative and this effects EVERY area of my body, the worst being my digestion. Feels like electric shocks from left through the right. Than my kidneys begin to hurt and so on. My doctor refused to do a second test.

  81. BB says

    To David from Ireland

    I also have the white tongue since all my symptoms began. I read on the internet it was from yeast over growth. Yes, the stool test and lab test came back negative.
    I have only lasted as long as four weeks so far, on a true gluten free diet.
    But thank you for posting this.

  82. David -- from Ireland says

    Chris, thanks for your article. It’s good to put this information out there.

    You seem to be the kind of doctor I call a ‘medical scientist’ — you don’t play the act that medicine knows everything and are aware of the limitations of the field and the advances of the science.

    One possible criticism of something you said in your article if I may. You say “There’s no consensus definition of NCGS yet, but the most common understanding is that it’s a reaction to gluten that is not autoimmune (like CD) or allergic (like wheat allergy).”

    Is this true? Whether it’s your own understanding or the medical profession’s understanding, I see no evidence of any kind leading to a sensible assumption that NCGS is not autoimmune. But perhaps there is and you could lead me to it?

    The most sensible definition I know of of NCGS right now is to define it as broadly as the information and evidence allows with no added assumptions, an Occam’s razor approach. One definition might be “a condition leading to some subset of (specified) symptoms if gluten is consumed, that is not celiac” (ie does not produce gluten enteropathy). Because it is just by definition non-celiac, is not a good reason to assume that it is not autoimmune.

    I have pretty bad NCGS and I strongly suspect it’s autoimmune. In fact, it is possible that NCGS is scientifically the ‘same disease’ as celiac disease, in every sensible definition of ‘same disease’, but just not having the symptom of enteropathy; as diseases often do not produce the very same symptoms in everyone. There are experts who theorize this. It is possible that the disease will be ultimately be called ‘gluten autoimmunity’. It is possible that the particular part(s) of the body which are attacked by the immune system in gluten autoimmunity vary–for some it is the gut — celiac disease by current definition — for others perhaps the nervous system, leading to depression for some, and perhaps it is the joints and muscles for others. And of course it could attack more than one part of the body for anyone. Then there is gluten ataxia, which may be a gluten-mediated immune attack on specific parts of the brain, which may be just another manifestation of gluten autoimmunity.

    On my gluten free diet, when I get accidentally glutened, I have nightmares and disturbed sleep for a few days and feel depressed as hell for up to a week, depending on how bad the glutening was. This is exactly what some ceiiacs feel. However, I was tested for the enteropathy and it came out negative, so I am not celiac as it is defined. I wish my doctor had told me (maybe it wasn’t medical knowledge at the time) that I might still benefit from a gluten-free diet even though I am not celiac. That could have saved me years of my life.

    I have another good reasons for thinking this is autoimmune. Before I went gluten free, I ALWAYS woke up with a very white tongue. I thought it was just ‘me’. On a gluten free diet, my white tongue cleared up after several weeks, except it now happens as a symptom of being glutened and lasts for a few days, while I am sick from the gluten. However, when I get any cold/flu I also get a very white tongue, suggesting that white tongue is something I get when my immune system is highly active. (Before I went gluten free I never noticed this connection for me between white tongue and cold/flu/infection/fever.)

    It is possible that there is a NCGS that is not autoimmune. This can even exist in addition to an autoimmune NCGS. In any case I see no good reason to be assuming that NCGS is not autoimmune.


    • says

      I agree that I think they will someday figure out that NCGS is really Celiac in another form, just as they figured out that Dermatitis Herpetiformis is really Celiac disease affecting the skin. There are so many different body systems and the gluten reactions definitely seem autoimmune or to trigger autoimmune (I ended up with Graves Disease and chronic hives before finally going gluten free.)

      I also am really starting to believe that it may also be related to GMO wheat, since some people are able to eat semolina flour or spelt (an ancient wheat relative) but not bread flour (most likely to be GMO’d.)

      I am curious as to Chris’s take on the genetically modified theory.

  83. BB says

    I’ve been struggling with this issue as well. And seeing SO many people in the same situation makes me wondering if it is our food supply!
    Anyway I am 43, female and have a long history of why’s.
    Terrible cystic acne as a teen, abnormal hair loss, bronchitis, pains in my left side, red bumps on ears and scalp. Diagnosed with low iron, never improved with supplements, heavy periods.
    20/30’s reoccurring breathing and back problems, hormonal problems, moody,
    Late 30’s I began having terrible none stop ear infections. The doctors gave me oral and topical antibiotics for three years. Never help a bit, infections returned. The pain was also in my jaw, I began to have TMJ and teeth began to shift.
    I got braces for the first time at 40. Hands/feet broke out in blisters, dry peeling skin, extreme hair loss every six months for six months, back problems, fluttering near the colon area, gums thinning, terrible heart palpations, slurring words, brain fog, would forget where I was going, dizzy, eczema, constipation, itchy ears, no skin left in them from peeling, my stomach fluttering spread from the left through the right. I could go on and on with symptoms. I seriously thought I had to be dying. While doctors were calling me a Hypochondriac and telling me to buy a book about a man that in the end learned he WAS dying and didn’t have to worry anymore, unexceptable!
    I was tests for Celiac about three years ago (negative) before the stomach pain spread. Doctor will not retest. In the mean time through trial and error I have learned that I cannot eat anything but meat, vegetables and fruit. This was very hard for me because I was never a cook. Every time I fail, the symptoms return about four days after and I have to go back to the diet.
    My father bled from his colon his entire life. I can remember him telling my mother all the symptoms he was experiencing. At the same time this exploded with me, he was in the hospital diagnosed with Ulcerative Colitis, had his colon removed and died because he was not gaining weight.
    Looking back, I now wonder if my father was actually a Celiac. I look at my family members and they all have something from Asthma, colic, ear infections, Hypothyroid.

    My symptoms are bad enough that I would about the reliability of celiac tests! I actually believe I would be on my death bed had I not caught on to the food connection.

  84. Sonata says

    I have Hoshimotos Thyroiditis. My immune system attacks my thyroid gland. My immune system flairs up when I eat gluten, or certain grains that have similar proteins to gluten, like corn, various nuts, coffee, gluten free chocolate(!), sorghum, tapioca, most foods on the gluten cross reactive food list. They make gluten free cookies with tapioca that can make one as sick as eating wheat!
    I was very fatigue 2 .5 years ago and I knew I had a thyroid issue. I did enough research and found a doctor who treats patients with a special diet and does some proper testing through Cyrex labs. I did not want to take pills, treat the symptoms and ignore the cause of my problems. I was loosing hair, I had muscle aches, I couldn’t sleep, I was drenching in sweat while asleep …many many bad symptoms. The worst was the lack of energy. I had to eliminate all the grains, dairy, night shade vegetables(may cause inflammation!), replace coffee and green tea with the black tea(surprisingly proteins in green tea and coffee are similar to gluten and can affect a thyroid gland and an immune system in a negative way, just like gluten). Nine months after my super strict diet my sleep was perfect, my hair started to grow and became shiny and my energy came back. For the last two years I’ve been feeling like a newborn! BTW I haven’t been eating gluten for 17 years since I came to the US, but I was occasionally cheating on gluten and taking anti histamine pills to calm the reaction(I was getting itchy and was getting a lot of pimples), still I got myself to the point where I managed to get Hoshimoto’s even avoiding gluten for such a long time.
    Gluten is no joke. Although I was eating healthy prior to my treatment/strict diet, tests revealed I had high acidosis, vitamin D level was extremely low and I was vitamin B12 deficient, low on magnesium,had high inflammation, and was reactive on hypo-glycemia…All the tests came out normal after nine months of a strict diet. I can never get rid of Hoshimoto’s or reactive hypoglycemia, but I can keep it under my control.
    My mom has rheumatoid arthritis(autoimmune disease) and she did some celiac testing in UCLA. They found nothing and concluded that she had no gluten allergies.I took my mom to the same doctor who treated me and whola! She had Hoshimotos Thyroiditis, inflammation of the brain and myriad of other issues. She got on the same strict diet and then got tested at UCLA 6 months later. Her inflammation tests revealed the lowest inflammation in ten years!They did not know why. I told them she was on a special diet, but her doc dismissed it as a quackery.
    I hope I didn’t take too much space and I hope this info will help someone to change their life through some dietary choices and a complete elimination of gluten! Cheers!:)

  85. Linda Cartland says

    Hi Chris.
    I suffer with fibromyalgia
    I went gluten free for about 5 weeks and felt a little better. I added wheat back in (homemade biscuits with butter and honey) The next day I did not have digestive issues but had ++ body pain and stiffness so that was pretty clear. Is NCGS associated with FM?
    Linda in British Columbia

    • Val Patenaude says

      Linda – that is the same reaction I have. No digestive issues but muscle pain and stiffness all over. Oddly enough, semolina flour does not cause the same reaction so I can eat pasta and bread made with semolina and somewhat more limited – spelt – without problems. I had thought I was developing something like fibromyalgia but when I first quit gluten, I was pain-free after five days. But it’s only some kinds of gluten. The worst is the modern short stalk hybridized wheat used mostly for mass manufacture bread and bread flour.

  86. Leslie Reinhardt says

    Oh…the agony of the feet (and sometimes the hands too!). For years I’ve battled foot skin that flakes, peels, splits all the way down to the meat and then bleeds, blisters, and itching. Doctors have no clue and just recommend athletes foot treatments which after years of use have never made a difference. After the latest blow-up left my feet swollen, covered with grey flaking skin and blisters, and unable to walk, I did some internet research. The next day I went gluten free. It’s been over 3 weeks now. I still have flair ups, but from what I’ve read it can take months for all the gluten to leave your system. My feet look and feel so much better. In addition to my feet feeling better, I have more energy, and for the first time in my life I’ve lost a little weight. It’s not much, only 5 pounds in the last month, but I’ve been battling my weight since I was 12 and have lever before lost a single pound!

  87. Sarah says

    Curious what it is I am actually having allergic reactions. Please comment if you have an idea..I have been gluten free before but am not currently. My allergic reactions started about 6 months ago..they don’t happen every time I consume pasta or bread or beer. And it even happened once when I ate rice noodles..so that doesn’t make sense. But it’s only at night when I am sleeping that this happens. I wake usually out of a dead sleep with red skin, itching like crazy, feels like I have needles in my blood. I have to take a benadryl or else I suffer. Any ideas? I’m at a loss.

  88. Dana says

    When I eat gluten I get canker sores. When I eat brown rice my mouth swells and becomes inflamed. And quinoa is the worst! I feel like I’m going to have an asthmatic attack. But I have never tested intolerant to gluten or grains in general. I just avoid them and feel better and I appreciate your paleo guidelines.

  89. Dar says

    I have been gluten free for a little over 2 years. I have seen no improvement in my symptoms over this period of time. I just recently went to see a GI specialist who has recommended that I try to slowly reintroduce gluten back into my diet to see if it’s tolerated. No where can I find any information on how to slowly reintroduce gluten. Any suggestions? How much at a time? How often? Thanks!

  90. David -- from Ireland says

    To MIchelle Myler:
    not sure I can help, but you said that you felt better on gluten free for about a year, then symptoms started to return. That’s consistent with contamination — are you eating out at all, or are you eating foods you aren’t sure of?

    I’ve come to the reluctant conclusion that it isn’t possible to eat out at all, as a gluten-sensitive person with serious health issues. There may be some exceptions, but most restaurants simply don’t have the diligence to prepare contamination-free gluten-free food.

  91. MIchelle Myler says

    Chris, great article. Articles like this make people, like me, feel a little less anxious about being reactive to grains, in general (and dairy). It can be is sad, lonely, depressing and painful, to live day-to-day just trying to eat “normal” and feel “normal”. There almost seems like no such thing to me on most days unless I am eating raw veggie/fruit smoothies and lean meats/fish. I am exhausted for trying to find the answers, spending money on supplements, and getting testing. Sometimes I think there might be an underlying terminal disease eating away at me, making sense of this non sense. I have had a life FULL of of food intolerances AND allergies started at birth, (21 allergies at 8 months and allergy shots at 8 months then again in college, bad seasonal allergies my whole life) and yes I have been tested on both levels (most recently food intolerances).
    My mom has celiac (all grains I could not tolerate from infancy). She was only diagnosed a few years back when I recognized that she was a poster child for the disease. Since I have not eaten Gluten in many years the traditional testes would not be valid for me. My naturopathic doctor did the gliadin sensitivity tests, and some other autoimmiune tests related to that, as well at the DNA marker test for celiac (negative). I was SO SURE i was celiac I would have bet money on it.

    My story is a LONG story but after I cut gluten out as an adult I had some cleansing reactions then recovered and felt amazing for about a year, then symptoms starting creeping back, a little different but GI (I do not and never did get diarreah, but if I ate a pizza now I am sure I would). I got traditional allergy testing and learned I was moderately (3+) allergic to corn, buckwheat, and avocado (I knew about avocado because when I eat it I am doubled over, and suspected corn too). Also results showed that I am mildy “allergic” (1+) to soy and egg (which I didn’t know until my naturopath read the results and said “oh, you can’t have egg, soy”. She believes even, mild reactions are worth avoiding while my allergist said I am not allergic whatsoever to those. SOOOO I cut out my mildy allergic items, felt relief, yay but then symptoms started creeping back AGAIN. By symptoms I mean my stomach seems to get inflamed, pushing into my diaphragm, causing fatigue, foggy headed, overwhelmed, sometimes it feels like bloating, mild sinus headache, anxious, bags and circles under my eyes, and constipation if I am not careful to eat lots of flax and drink lots of water (amazingly I can tolerate, go figure)?!

    Anyway, I then got food sensitivity panel done, and learned that I am intolerant to white potatoes, turmeric, green pepper, and some other random things. I can not tolerate coffee, or red wine like i used to start and begin my day with (black coffee in a.m. , a glass of red at night). So I feel l slowly I am dwindling with what I can tolerate. I am getting too skinny because I am so limited. I cook and eat, I do! I have green tea instead of coffee, which is better for me anyway, but I feel best when I am completely grain free, ughhh, with the exception of quinoa. I can not tolerate oats, and I am pretty sure I can not tolerate rice. My mom’s doctor gave her a sheet of all of info. about the other grains etc. that people start not being able to tolerate after they start eliminating gluten. Can anyone shed light on this. I feel like I am the POSTER CHILD FOR THAT!!! whatever it is.

    I do not usually post, or post this much if I do. I am hoping someone can shed some light. ??? or share a similar experience. I have gone downhill (especially – now I am only 40, but feel 80. I take regular doses, of 5,000 iu Vitamin D3 and Evening Primrose oil (1,500 e.o day) which help me maintain a leveled hormonal balance (all of my adult life that has been a problem). Also take DGL Licorice, and L-Glutamine, and chinese herbs that are supposed to relax the stomach (my acupuncturists gave me). I have very low iron stores(take gentle iron) BUT not low Red Blood Cells (yes, you can be low iron without being anemic, and I will add they have ruled out not have thyroid problems and hashimtotos. I also have low bilirubin, and my WBC’s teeter above and below normal/low and have for many years, oh and very high

    I have been tested for HPylori and parasites etc. Please help me! I just did a three day juice cleanse and was great until I ate GF oats! Ok so now I know….

    I am aware of leaky gut and candida. I am sure i had candida and maybe still to some degree because of the “heximer” (??) reaction I had when I stopped eating gluten. I think a ton of yeast & mucuous came out of my body *sorry for TMI)
    Thanks for anything you can do to help my next steps in healing.

    I’m a mess :(

  92. Leonardo - From BRAZIL says

    Hello, Chris.

    First of all, it is nice to meet/talk to you.

    Secondly, congratulations for the website, for your book (that I bought – but I am still waiting it to arrive by mail), and for the kind of amazing professional and human being you are).

    That said…

    Well, my name is Leonardo, I’m 37 years old, and I live in São Paulo, Brazil (I am Brazilian).

    I am very active man, I workout at least 5 times per week (40 minutes of weight lifting + 25 minutes of aerobic) since I was 16.

    I have always been on a high carb and protein (and extremely low fat) diet. Moreover, I have been using Creatine, Glutamine and Whey Protein a lot and for years and years.

    I love bread (of any kind, especially whole wheat), pasta, pizza, rices (brown, black, red, savage) and diet soda.

    I was very ripped, strong and fit guy – like a “pro” (athlete).

    However, around my 34 years old, something all of sudden change in my body. And I started to get slowly RESTLESS LEGS SYNDROME and fat (body fat).

    I’ve been trying everything to become again very fit and, most important, to get rid of my Restless Legs Syndrome.

    And honestly Chris, I was so so so afraid of eating (or just adding some) fat in my diet – because of more than 20 years not eating it -, that the idea was giving me nightmares.

    Then, one day the magic happens, I found you!

    I read everything about your book, I watched all your videos on Youtube, and 20 days ago I decided to change my diet (exactly like you said – with some little advices from the Grain Brain book too).

    Even though I felt very weak, dizzy etc. in the first 12 days, now I am feeling great.

    And, not only that, I’ve lost more than 7 pounds (fat and – of course – water and muscle too) and my Restless Legs Syndrome is much better (not cured yet – but, for sure, I want to get it cured).

    So now I am pretty confident that eating gluten, rices, cheeses and not eating fat at all etc… all that were killing me slowly. More than good, I was doing bad to my body and mind/brain.

    Now, from carbs I just have one red apple or one banana, and 2 pieces of mandioca (manioc) per day – more veggies.

    By the way, Chris, can I still have Creatine and Glutamine?
    Could I add more complex carbs (from manioc, for instance), so I can be more pumped?

    I am telling all my family and friends about you and your book.

    Thank you very much, Chris. God bless you and your family!

    A big huge from Brazil.


    *Ps: You should come here to give us lectures.
    *Ps2: I am your number one fan in Brazil.

  93. Becky says

    Russ Crandall at The Domestic Man has some good breadstuff recipes using tapioca starch. And the Health Bent folks (of the cookbook Primal Cravings) have a tapioca starch biscuit recipe that answers all those howling needs for a PIECE OF BREAD, DANGIT! when you’re having soup. :)

    For years I made sourdough using Nancy Silverton’s book Breads from LaBrea Bakery. You make your own starter, and it takes about 14 days, with you feeding it three times a day. But after it gets going good, you only have to feed it once a month. I used that starter for YEARS, but threw it out when I went paleo. It had LONG rises, and the bread was scrumptious. I still cannot believe it devours all the gluten, though. And with no celiac symptoms, only the disappearance of my Hashimoto’s antibodies, I am LEERY of eating wheat flour, even sourdough. So please report back if you try sourdough!

  94. beaker says

    I suspect you slipped into a state of gut dysbiosis/SIBO. This happened to me after a stomach bug and stressful times. I highly recommend you drink 1-2 cups of milk kefir a day or do a 3 month course of Symprove. I’m in good shape now, also I only eat long ferment sourdough bread.

    • GREG says

      Thanks beaker!
      I will give it a shot.
      Anything to rid myself of this terrible gluten fee curse.
      If all else fails I’ll try the long ferment sourdough bread.
      Tried feeding some left over GF bread to the birds the other
      day and even they wouldn’t eat it. :-(

  95. Greg says

    I was sick with intestinal cramps and headaches, bloating and gas, acid reflux, diarrhea and constipation, brain fog, depression and anxiety, thoughts of death and dying, ongoing fatigue, etc. Upon eliminating gluten after about 8 weeks all symptoms were gone. I have started eating oats and “may contain wheat” food with no problems after 6 months gluten free. Also I can’t tolerate any kind of milk, lactose free cow’s milk, almond milk, rice milk, coconut milk. But I can have gluten free pizza loaded with cheese no problem. Have not been tested for CD as no history in our family but afraid to do a gluten challenge in case I get real sick. I take a pro-biotic that contains lactose with no problem. Do you think digestive enzymes would help with tolerating gluten. It was at the age of 60 and 6 months after my mother died that I developed the gluten sensitivity.
    I’m hoping it was an emotional reaction and now that the grieving process is over and I feel better I might be able to tolerate small amounts of gluten. It was a Dr. Oz show that talked me into going gluten free. That was the worst thing I could have done as now I can’t be tested for CD properly.
    Anybody have a similar story?

  96. Jennifer says

    I just finished my first Whole30 challenge a couple of months ago. I have Hashimotos Thyroiditis and have been gluten free off and on for a few years. The thing is, I had no digestive distress and never noticed any immediate reaction to gluten on the times that I tested it. Not after a day or a week or even a month. But after two months, if I continued eating gluten I would gradually start to feel worse.

    My main symptoms have been muscle pain and insomnia. After my Whole30 I have kept my diet Paleo, and have noticed some improvement, especially with my sleep and PMS symptoms (which have been AWFUL for the past three years.) I have “tested” several “off plan” foods to see if I could tolerate them on occasion. Dairy didn’t go to well, which was surprising and saddening to me. Red wine has given me some issues too.

    I am afraid to try gluten again, but I may introduce other grains. My question is, can a reaction to gluten and/or other grains be cumulative? Meaning one has no reaction for a month or two but can start to feel bad with habitual use? Or have I been barking up the wrong tree all this time? I guess I am wondering if, once I introduce grains (gluten or otherwise) how long should I need to wait for a reaction in order to tell if I can tolerate it? Especially considering my symptoms were not the typical digestive ones?

    • beaker says

      Make your own long fermented sourdough bread, you’ll never have gluten issues again. The dough is basically pre-digested by the living sourdough culture making it harmless, easily digestible and beneficial. Was a huge discovery for me. I ferment my doughs 24hrs or more.

  97. Kate says

    Great to read about recent info on gluten issues, Mr. Kresser. Thank you for distributing the info. I live in Germany and most people incl. medical staff have never heard of NCGS!

    I have the same symptoms as many people here and especially the connection to sinus issues was new to me up until the Gluten Summit . My sinuses get clocked, often so quickly and bad, that I get a serious headache. I have so much mucus, that I cannot smell or taste much anymore. I used so think my sense of smell was just underdeveloped somehow, but now I know.
    I also experience stomach pain and intestinal cramps, although not every time that bad.

    I used to have the same sinus issues with dairy, so that at first I thought I was lactose intolerant. After removing gluten & most grains I could tolerate dairy much better with time. Now I can have it in moderate amounts without symptoms.

    I would encourage everyone to try the 30 days gluten-free trial and just feel for yourself, especially if you think you suffer no ill effect. I lived with intestinal issues, poor nutrient absorption etc. for years – like many here – and was so used to the feeling, I did not notice, that anything was “wrong”. My reactions to gluten got really noticeable only in comparison to a symptom-free reference state after several month (!) of a gluten-free diet.

  98. Frankie says

    Are there any resources that might explain why:
    the long one is gluten free, the more intolerant of certain ingredients such as sugar? I am GF for nearly 3 years, including very little rice, no corn & no oats, and find I am becoming intolerant to having a low sugar dessert after a meal accompanied by small amounts of red wine. But I can find nothing about this.
    thank you

    • Deb says

      Hi Frankie.
      Just wanted to say you’re not alone. Sugar is becoming a problem for me too and I really have to watch wine. Usually with wine I can tell just by smelling it whether or not it’s gonna be a big reaction (to my ONE glass once a month) …or just a slight hangover the next day. I have also started reacting to almost anything green in the veg line. It’s driving me mad coz I used to the kind of person who would eat anything and now I end up bringing my own food to parties. I also wish I knew what was going on.
      They have diagnosed me with ME FMS and CF but going GF did make a difference to my stomach and headaches at least. For me the menopause has really kick all my symptoms in to overdrive which is why I tried the GF and dairy free diet but although there have been some ups there have been downs while I try different HRT preparation – which I also seem to be reacting to in a less than positive way sadly (got a do something tho as menopause symptoms so bad).
      Just wanted you to know that other people are going thru this stuff too tho.
      I have found looking at the comments on this site have made me feel less alone and like maybe I’m not some crazy hypochondriac which is how most Drs have made me feel.

  99. Val Patenaude says

    I have a gluten intolerance reaction to wheat bread flour. If I eat any, two days later all my muscles ache as though I’d been having muscle cramps. I feel poisoned. But after a 2 month completely gluten free period, I tried introducing different forms and find I have no bad reaction to either semolina or spelt. I only react to modern bread flour. Has anyone else had that experience?

  100. scrowe says

    Hi Chris,
    I have a question about the Alcat Blood Test and testing for gluten intolerance. My test showed that I am severely sensitive to wheat, however I got the green light on spelt. I am wondering how you feel about the Alcat test as an effective means of pinpointing food allergies, and also, what is the difference between wheat and spelt if they both contain gluten? Thanks!

  101. beaker says

    None of this is an issue if the grains are prepared properly. Newer research even suggests this! What am I referring to? Sourdough. That is fermenting your dough with a sourdough culture for long periods of time. Funny how this was the way humans used to make dough and didn’t have all these issues. I ferment my doughs for 24-48hrs and have no gluten issues. However if I eat regular store bread for a couple days I start to get bloated. I have a “gluten sensitive” friend and we did an experiment with my long ferment sourdough and as expected they had no issues with my bread. The long ferment breaks down and predigests the gluten so it can be easily assimilated. Now, to those who claim this does not work for them all I can say is not all sourdough is created equal. Some claimed “sourdough” is not even sourdough, it’s regular bread with sourdough flavoring. Even if you have a artisan sourdough they usually only ferment for 4hrs or so. The only way to really be sure is to use a reputable artisan sourdough baker that does loooong ferments or make your own. If I can make it anyone can.

  102. Anna says

    My son was complaining of stomach aches after every meal. We got a blood test for a gluten allergy and celiac. They both came back negative.
    We still suspected gluten to be the problem so we changed to gluten free. His stomach aches went away!
    If he eats gluten now, he vomits every time. Even inhaling some flour made him vomit.
    The blood test can say it’s negative all it wants. But his body is telling us otherwise!

  103. Ian Mitchell says

    When I was forty three years old, I decided to eliminate gluten for at least six weeks. Previously I had eliminated gluten for periods of three and four weeks, with no effects. After five and a half weeks elimination of gluten I noticed that I could breathe through my nose.

    I had no memory of ever having been able to breathe consistently through my nose. The medical label was “allergic rhinitis”. Eliminating foods to which I was allergic – as indicated by skin scratch tests and blood tests – had no effect on my rhinitis. Zinc deposition on the inside of my nose and scarring the inside of my nose with an electric heater had no long term effect. Inhalations of Rhynacrom (sodium chromoglycate) had just enough positive effect to encourage me to keep on inhaling it.

    Since removing gluten from my diet, I can still breath through my nose even when I have a cold.

    When I was fifty two years old, after nine years of gluten elimination, I challenged with wheat. I ate substantial portions of plain biscuits and pasta for three days. On the fourth day, the back of my mouth became inflamed and swollen. I reverted to a no gluten diet.

    • Becky says

      Have you tried having a little bit of gluten once in a while? I am curious, because I’d like to try just the occasional piece of pizza (after 3 years gluten free), but not massive challenge amounts of gluten like you did. Wondering if we can sneak occasional gluten past our body’s radar. I suspect not. :(

      • Ian Mitchell says

        Hi Becky,
        I could probably eat small amounts of gluten infrequently. I do not for several reasons.

        1. I have subsequently become intolerant to starch.

        2. I have many food intolerances: gluten, dairy, eggs,
        salicylates, amines, glutamates, starch and a host of food additives. ( Most of my intolerances were discovered under medical supervision using the system developed by the Royal Prince Alfred Hospital Allergy and Intolerance Unit, Sydney, Australia. The premier populariser of this system is Sue Dengate, see fedup.com.au). I react to many of the foods to which I am intolerant in the same way; brain fog, fatigue, drop in blood pressure. So if I start sneaking a few of them and get a reaction, it is time consuming to figure out which one has affected me. Life is too short to bother.

        3. After a period of eliminating a food, reintroduction of the food may provoke a different reaction to the original reaction. This has happened to me only with gluten, but it is a possible complication in discerning what is going on.

        4. I crave some of the foods to which I am intolerant. Eliminating them entirely uses up less willpower than eating a little bit.

        5. Trying to establish a “reaction threshold” for a food, and keeping intake below that threshold, may not be easy. Sometimes, food intolerances can be quite variable. Symptoms can come and go.

        I am not quite as rigid as I have depicted above. I usually have a few bad days around Christmas and New Year, due to sneaking.

        In case you are wondering what I eat: lamb, chicken and low amine white fish (fresh as possible, nothing bought frozen, nothing from the supermarket), “Supafry” (beef tallow), celery, lettuce, and mineral and vitamin supplements to make up for the deficiencies of such a diet.

        See how lucky you are to have only a gluten intolerance!

  104. Tanya says

    This is a wonderful website to all the adverse reactions to gluten. 16 years ago, I had my daughter and it was crazy from the start. I was breast feeding and trying to be a good mother. But no matter what I tried, she screamed for hours and was so uncomfortable. Dr’s said it was just colic, but I knew otherwise. She got older and some nights she was up 12 times, thrashing in her sleep, screaming or moaning away. I told the doctors she had two personalities, she was such a wonderful toddler, then out of no where she was crazy. The only way she would sleep was on her tummy on my tummy. Yes, my sleep was not the best this way. But it’s what you do for your kids. After she was three, I found that I was pregnant. I was desperate to find out was wrong with her. We had every blood test done and the doctors basically said I had created a monster child with spoiling her by sleeping with her. I felt awful! One day, she had the flu and only wanted to eat mashed potatoes. Amazingly enough, she only woke up three Times that night. That’s when I decided to do eliminations with the food. It only took two weeks to find out that wheat products were the enemy of our life. Back in those days it was very hard to find gluten free products! The noodles would fall apart and the bread was awful! But we did it and her personality changed. It was no longer Jekyll and Hyde! She was a sweet three year old that was full of love and her eyes started to sparkle. The allergist specialist that we went to said it was absurd that I was proposing that a food sensitivity would change the personality of a child. But we swear by it. She had several accidents along the way with wheat and every time she would turn into the crazy child, hyper is not even the word, she turned into the, well, can I say devil? Because that is what would happen. When her brother was born, once again I was breast feeding and at three months of age he developed skin eczema and started throwing up after I fed him. I thought what luck, another child with an allergy. The first thing I did was cut gluten out of my diet, so I could breast feed him and within three days his skin cleared up and no more vomiting. I did visit an allergist again and they said to reintroduce wheat several times to determine if it was real or not. After doing this two times, I couldn’t put my son through it again. To this day, he is actually allergic to wheat, oats, barley and rye. We carry an epinephrine pen because he is so allergic. My question to you, is my third daughter does have digestion problems, but she is off of wheat products but does struggle with constipation and stomach aches. She gets plenty of fibre from flax and vegetables, with both kids having allergies, I get worried she has sensitivities, but don’t know how to figure this one out since it’s not as straight forward. I must have a poor gene. What happens to her digestive system if I can’t figure out what is wrong. Does it get compromised?
    I also just want to tell parents that I didn’t have the medical profession support my findings, but don’t give up on your quest to find out about health with your kids.

    • Becky says

      Perhaps it is something else with your third daughter. We are all different, and that is important to remember. You mention flax. That can be a lot of roughage for a small child. Vegetables contain a lot of insoluble fiber.

      Digestive detective work is in order. Like with your first daughter, try eliminating some things your second daughter eats and see what happens. As well, maybe listen to what she says sounds good … you discovered the other little one’s problem when she would only eat mashed potatoes … ! The difficulty can be that your third daughter may be bothered by something the rest of you can eat with no problem.

      It may be as simple as a fruit or as complicated as deeper gut flora issues. Chris does have some posts on here about gut flora and fiber and constipation. I assume you are not feeding your children packaged, processed foods that contain dozens of ingredients, flavorings, sugars, seed oils, etc. If so, those should be the first to go. We knew a couple whose little girl was sweet tempered before breakfast and out of control after breakfast. They finally traced it to artificial colors in her breakfast cereal. Constipation is not always about fiber, but more about gut flora, water, minerals like magnesium, stress, and other factors.

      • Kathleen says

        Constipation can actually be an allergy reaction. It was for me back when I was a kid and it has been for my dad. He doesn’t do so well with one of the foods that everyone uses to curve it, i.e. oats.

      • Tanya says

        Thanks for the feed back! We stay away from processed food, mainly because of the gluten allergy from my son. My third daughter loves and craves spinach smoothies mixed with watermelon and yogurt. Yogurt seems fine for her stomach, but does complain if she has milk. We have tried raw milk also with no change. For the first two years of her life we gave her probiotic and acidophilus, but honestly, I didn’t find any change except in the bank account :( it’s too bad it so expensive. I did fail to mention that my daughter has goldenhar syndrome which I’ve tried to research to find out if other children with this may have the same digestive problems. But, I can’t seem to find anything. This syndrome does affect the midline of the body when developing in the uterus. The doctors don’t really want to find the problem, they just have her on medication to help with the constipation. I don’t feel comfortable with this, but don’t have a choice. I will start to eliminate foods better and keep a diary.

        • Becky says

          I have seen remarkable results in people using acupuncture for a variety of issues, including constipation. And have experienced some remarkable resolving of several issues with it, myself. A good acupuncturist is a great blessing as an adjunct if not first-line defense for treatment of a surprising number of things.

    • Jan Mitchell says

      Hi Tanya,
      I strongly suggest you look up the Royal Prince Alfred Hospital Allergy and Intolerance Unit in Sydney,.Australia. They have a complete protocol for investigating food sensitivities. Most foods contain naturally occuring salycilates and amines, which can affect children and adults. The unit has lists of common foods and their levels of problem food chemicals. You might also find help from Sue Dengate’s website and her books ‘Fed Up’. Sue’s daughter changed from impossible to an angel after she went on what Sue calls the ‘fail safe’ diet. She now works in co-operation with the RPAH Allergy unit. Anne Swain was one of the early investigators of food intolerances. There are also people in the USA who do research in this area now, but I cannot name them without research.

  105. Janet says

    I’ve been leaving out gluten from my diet for about a year. At first I only eliminated wheat, but I was still getting daily stomach aches, until I left out gluten completely. I felt much better, but not quite wonderful yet. Initially I ate gluten-free foods from the shelf as mere replacements of wheat and gluten products, but I soon started eating ‘whole foods’, rather than a gluten-free breakfast cereal, I eat eggs, veggies, lean free-range meats, fruits, nuts, etc. I also really enjoy quinoa, which is naturally gluten-free and also protein-rich. I started to feel great. And I also lost weight! About 6 months ago, I got a severe allergic reaction in the form of cramps, diarrhoea and hives (all over my body, getting worse and worse, while it itches and burns). It took me two more bouts of this in the period of a week to realize that it was milk. I’ve been keeping away from milk, cheese and yoghurt since then, and haven’t had any problems. I’m using a calcium-and-magnesium supplement, probiotics, a digestive enzyme every now and again, and I drink ginger tea often. I throw veggies and fruits into my blender and drink these green juices often. And I feel great!

  106. Rose M says

    Oh wow.
    Here’s my story: I’ve had this persistant rash on my arm. Biopsies, anti-biotics, creams and lotions to no avail. Just 2 weeks ago, I was eating whole wheat pasta and within minutes, my body started itching and the rash on my arm got “angry”. Soon, I started getting welts on both my arms and finally unable to stand it and with only Alka’Seltzer Cold and Flu (which has antihistamines) on hand, I dissolved it and drank it. Within 1/2 hour, the itching stopped.
    Looking back, I think I just learned to ignore the itching for the most part, that night with the wheat pasta surely scared me so I stopped eating anythign with wheat for a few days. Totally forgetting about the last episode, a few nights later I had a slice of pizza and bread sticks and again, the rash on the arm and the itching started. That finally did it for me. I’m thinking I don’t need to go see a Dr to “diagnose me”. I knwo what I need to do and that’s exactly what I’m doing.
    It’s been about one and half weeks since my first episode and I feel great. The pain on my knees and what seemed like constant body pains and aches have subsided tremendously and I feel energetic.
    In closing, I’m 49 year old female who never had even hay fever in the spring much less any type of food allergies. Totally puzzling! Hope this helps someone

  107. Christine says

    About a year ago, I swapped whole wheat grains for almost all of my refined grains (cereal, pasta, bread). I typically eat the same whole grain cereal at least once a day and, maybe 3-4 times a week, also eat either whole wheat sandwiches or whole wheat pasta throughout the day.
    Increasingly, lately, I have noticed that after I have my cereal in the morning my stomach starts making unsettling sounds, as if I’m starving. Could this be indicative of wheat allergy, or am I just having too much whole wheat? I want to note that this doesn’t happen when I eat white pasta/bread/rice.

  108. says

    I cannot help but wonder if CD and NCGS will–in the end–be the same thing only expressed differently in different bodies, i.e. it is all CD if you have a reaction to any of the antibodies.

    For me, I found out that I absolutely had a gluten sensitivity after a terrible reaction to wheat, which was then categorized as a true wheat allergy. My GI doc thinks I actually have CD, but its impossible to test for given the wheat allergy. This is important because he is screening me more aggressively for lymphoma and colon cancer, something I think all of us–CD or NCGS–should be monitored for.

    Dairy and I are good, but grains are out. Even quinoa bothers me and makes my joints hurt. I can have limited white rice without reaction, but I choose to not have it very often. I think that the way it all unfolded for me has made all of the food changes more palatable: wheat free to gluten free, gluten free to grain free, grain free to perfect health diet (which has been a good fit for me and my symptoms. Ultimately, food is health, and for me it looks one way, and for another, another way.

    Here’s to eating to life!

  109. Sidney Phillips says

    I highly recommend people read “Why My Brain Isn’t Working” by Dr. Datis Kharrazian. I read this book because I found my memory worsening for no apparent reason. I’m in my late 30’s and was diagnosed with Hashimoto’s recently, which was somewhat unusual because like all autoimmune diseases, it mainly affects women.

    Dr. Kharrazian mentions everything Chris talks about in this article. I immediately cut out all gluten and dairy. The book mentions antibodies against gluten attacking tissues such as the brain and thyroid as a common cause of memory problems and thyroid issues. Dr. Kharrazian mentions one way to test the integrity of the blood brain barrier (BBB) is by the GABA challenge test: take 1000 mg of GABA. Normally it can’t cross the blood brain barrier, but if you have defects in the BBB you will feel effects. Before I started gluten free the GABA challenge test knocked me out: shortness of breath, dizziness. Now, two weeks in I just did the GABA challenge test again and my results were much better. Still had a slight reaction though, so my gut and BBB still isn’t fully healed. I’m taking high dose prebiotics (by way of Bob’s Red Mill resistant potato starch, 6 tablespoons daily) and probiotics, which are helping heal my leaky gut.

    Everyone go on a gluten free, dairy free diet for at least 2 weeks and see the results.

  110. Belle says

    I gave up gluten when I came across the paleo diet. On the whole I don’t eat bread, pizza, pasta or pastry, but I have found that if I eat a very small amount of gluten I have the worst stomach aches than when I ate gluten all the time. Can you advise what is happening now? Have I given myself a sensitivity to gluten by greatly reducing the amount I eat?

  111. Emily Welk says

    I have hashis and psoriasis. I don’t eat gluten and I used to be paleo. This whole last year before I was diagnosed I had brain fog so bad I almost didn’t finish my bachelors degree or geology field camp! I was crossfitting really hard and drinking lots of coffee and studying for SO many hours a week. I fell off gluten free for a while but now feel much better in it + levothyroxine. Got my adrenals tested last week( blood) because I’m pretty sure they aren’t doing great. I am super sensitive to cold too. Next I will eliminate dairy.

  112. MJ says

    I am gluten intolerant–severe stomach distention, gas, night sweats when consume any gluten. Have been on strict gluten free diet for almost 3 years (limit soy, dairy and processed foods, too). On a recent trip to Paris, I ate everything, including daily bread with meals and had no reaction. Within 48 hours of eating in the US (no gluten), my stomach was distended and back to the same issues. Any thoughts?

  113. Amber says

    My husband and I both removed the gluten from our diet about 10 months ago starting out on a healthier lifestyle. I have had migraines since the age of 6 and have had digestive issues most of my life that have progressively gotten worse over the past few years. It had gotten so bad that it was impacting my personal and professional life. I also always seemed groggy or tired no matter how much I would sleep. After two months we introduced wheat back into our diet and within ten minutes I began having cramping leading to other unpleasant symptoms. That made both of us believers. I have not had a migraine in 10 months! I have been telling everyone I know that they need to try eliminating the gluten for a month and see how it may effect their lives. Our doctor does not believe that this is the cause and says that eliminating all wheat and grains is dangerous. I’m so frustrated that I plan on changing doctors but find that I feel healthy overall and have also lost weight.

  114. Kathleen says

    @ Suze
    Probiotics are good bacteria and are intended to help recolonize the intestine so that we don’t have the issue many of us are afflicted with. I eat a lot of yogurt, and have used some probiotics as well, with the hopes of fixing my gut flora but so far I haven’t been too successful.
    Someone else made a comment regarding Candida and asked if it was an issue – I know it has most definitely been with myself. Since this whole issue began with me back in 1980, Candida overgrowth has definitely plagued me. I know that it’s the likely culprit for creating the leaky gut in the first place given my research on that pesky yeast however knowing the why as to why it’s so ripe for overgrowth in some of us and not others is a good question. Stress I’m finding is a big factor – it feeds off stress hormones and inflammation so if you’re eating things that create inflammation in the body – it’s ripe for feeding Candida.

  115. suzanne says

    Hi I have been a Coeliac and Lactose intolerant for 20 years. Up to four years ago I was quite well on my GF diet but then I contracted a parasite called Dientamoeba Fragilis and had to take a lot of strong drugs to eradicate it.
    Its two years since i got rid of the parasite but i still can’t eat fruit, carbs of any kind and sugar in any form.
    I am in a constant battle to keep weight on and am fatigued a lot of the time, i think i have a big problem with a gut flora imbalance. I am taking probiotics and praying for some good gut flora to return.
    Does anyone know if probiotics feed the bad bacteria? this is a concern for me. thanks for any advise.

  116. Bronwyn says

    I have been on a gluten free diet now for two and a half months. I did also eliminate dairy. I am a type 1 diabetic with Hashimoto’s and asthma and a number of other conditions that are also linked with celiac – while I have had not had a full range of tests done, the ones I have had have come back negative.

    Things did improve on the diet until 2 months into the diet and then things went wrong. I have not totally eliminated grains and tried some gluten free products that seemed to work to my detriment and now even a diet of only meat and vegetables is still resulting in trouble. My insulin sensitivity is bouncing all over the place and I never know how much insulin I need from day to day. My adrenal insufficiency and hypoglycaemic unawareness which came right the second month on this diet is again a problem.

    I have lost too much weight now and do not know what to do about it as I am still losing weight. How can I get help to eat a diet totally free of all the things I seem to react it (and it seems to be a very large amount of things that can set me off) and yet a diet that also provides enough calories and sufficient vitamins and minerals – this month I was showing signs of magnesium deficiency again and I have always suspected I have low zinc both of which seemed better a month back.

    I am desperate now as I need my symptoms gone, but I also need to be able to eat and all the time I am having to remove more and more foods from my diet until I feel like I can eat nothing at all.

    My asthma did stop on the diet and yet came back quite severely last night after drinking only black rooibos tea with honey flavouring. Do I have to just drink water now?

    • says

      You may want to try at Atkins type of diet, where your carbohydrates from vegetables are also counted — although I am only prediabetic, I find I feel much better in general when I also watch starchy vegetables, highly sweet fruits, etc. You may also want to avoid soy — I have a worse response to soy products than I do to gluten. Soy is in many, many food items and is in many gluten free processed foods.

      • Bronwyn says

        I have cut soy out of my diet entirely as I reacted very badly to it when I first started the gluten free diet. Is soy lecithin also soy though as that may have crept in at times?

        Because I am a type 1 diabetic I have to count all carbohydrates – including those from any vegetables (starchy or non starchy) as I inject insulin depending on how many carbs I am eating (carbs in nuts get counted too) However because of the insulin I have to treat any hypoglycaemia with high GI carbohydrates – usually 100% fruit juice (anything from 50-200ml at a time depending on how low my sugars are) – I cannot get away from this no matter how hard I try as my sugars on this diet do tend to run too low very often even when on very little insulin.

        I think I will have to go on a whole foods diet – no processed anything and no grains – but will I have to include fruit then – I need to stop the weight loss now and am not sure how to get in enough calories to do this on such a strict diet. Also what about potatoes – they do have a tendency to push my sugars up over quite extended periods of time, but otherwise I do not react to them and they are starches – I need some starch in my diet if I am to keep my weight from dropping more I think…

        • says

          I would consider adding good fats, such as avocado, olive oil, some butter, etc, back to your diet. When you cut your carbs and don’t add fat for your body to burn, you will end up burning muscle and fat stores. I’ve switched to whole milk and as much avocado as I want, and have seen an overall improvement in well being and in my blood sugars. It eliminates the craving for carbs by keeping my insulin lower.

  117. Deb Pacey says

    Thanks for all your help Becky. It has been very much appreciated. I’ve got lousy Drs and I feel like they are no use at all sometimes.
    Got to say that feeling better is not ‘nothing’ and I for one, after all these years, am enjoying feeling better.

  118. Becky says

    Go through Chris’ post above carefully. He recommends an elimination diet. I clicked on the Cyrex Labs link, and apparently you do need to eat gluten before being tested. See their “FAQ” link. They don’t say for how long, but they do say that “A gluten-free diet can cause false negative results.”

    Also note that the more studies being done on gluten and grains are being done, the more info is emerging that other grains contain interactive substances that also cause problems. The current issue of Scientific American has one. It even talks about a study showing that the majority of people tested showed no gluten sensitivity, despite the fact that they FELT BETTER WHEN THEY AVOIDED GRAINS. The doc commenting on the study said it was too bad they had given up grains FOR NOTHING. I don’t think feeling better is nothing, and I suspect you don’t either.

    • Becky says

      To substantiate, I had Hashimotos antibodies in my blood tests for years until I went grain-free. Over about six months, the antibodies disappeared entirely, verified by blood tests. My doctor said it was probably eliminating wheat that made that happen. So, if you are NOT eating wheat, your body may stop making antibodies against the gluten. Therefore they would not show up in a blood test.

  119. Kathleen says

    For those whose doctors have used ‘allergy’ and ‘celiac’ in the same context, its not. Both are inflammatory conditions but present themselves differently.
    In celiac disease, the celia are negatively affected (besides getting the remainder of the associated issues); in an allergy, it affects the entire system depending on to what degree the allergy is and how the allergy presents itself. You get the antibodies if you’re allergic. Some will get digestive upset, some will get changes in blood pressure, some will get edema (localized or whole body),… It’s very personal.

    • Deb Pacey says

      Is that comment for me Kathleen because if it is I’m not quite sure what to do with it. How does your comment help me?

      • Becky says

        She is just clarifying the meaning of allergy and celiac. I believe that for a gluten sensitivity test, you have to KEEP eating gluten for some time before and right up to the test. I had Hashimoto’s thyroiditis (an autoimmune condition) for years until I stopped eating wheat. The Hashimoto’s antibodies (which show in a blood test) disappeared entirely. Yet I have never been celiac or had any conditions related to it. Menopause is perhaps just coincidental with arriving problems; often it is simply years of eating a food or foods that our body has difficulty handling: at some point some bodily function begins to struggle enough that we feel it. If the reaction is strong enough, it comes when we are younger, maybe? At any rate, spending loads of cash on testing isn’t necessarily the answer. Eliminating certain foods, keeping close track of what you do and how you feel, and adding foods back in and seeing what happens … you will get your answer.

        • Deb Pacey says

          Thanks Becky. It’s a bit of a tough one with all the different kinds of reactions to grains and gluten.
          Does anyone know FOR SURE if I should have been eating gluten when I had my celiac blood test? If I go back to my Dr I need to know I’m right when I say I should have been doing this or she’ll eat me for breakfast

  120. Deb Pacey says

    Can anyone tell me if by being on a gluten free diet whether or not that I might get a false reading from my celiac test? I’ve been using a gluten free diet for several years now and there has been a quite considerable improvement but I wanted the test to make a proper diagnosis. My test came back negative but I’m pretty sure I’m allergic to gluten and dairy. For years Drs have been I have been tagging me with diagnoses like IBS, chronic fatigue, ME and FMS but when I was a kid they just said I was sickly. They even removed my appendix and then told my Mum it wasn’t infected!
    When my celiac test came back negative and my Dr told me it proved I wasn’t allergic to gluten OR WHEAT I thought that’s doesn’t sound right and I thought “Time for ME to start checking this out.” Glad I did.
    Menopause made things so much worse – anyone else found that?

  121. Sabine says

    My now 2 year old and I had been on a grain free, dairy free diet for 10 month. Her skin much improved, but she now has a way to loose stool and is lacking energy. So we need to go on some kind of diet again.
    Wheat free is not helping enough, maybe not at all.
    My symptoms, mostly the dermatitis, did not improve. I wish we could just test for the problem. Any suggestions?
    Thank you.

  122. Jenna says

    In my case, I have not had super bad reactions but to a lesser extent they have mirrored what others are saying here and have gone on for 20 or 30 years. As much as possible for the last 6 months, I have removed gluten and definitely feel better. Unanswered questions:
    1) How long should it take to heal a leaky gut?
    2) Why is there no discussion about how Candida may play into these issues?

  123. Becky says

    Yes, there are some other foods that mimic the gliadin molecule, such as coffee. I think Chris addressed this in his original series on gluten. It’s easy to research.

    Mexican food often contains corn (tamale dough) and for me, corn turns out to be a big irritant. To heal up from stomach/bowel irritating foods, I make “Knox blox” out of Great Lakes gelatin. It soothes. When the body responds with pain and irritation, it’s nice to give the digestion a rest with broths and soothing liquids like water or homemade almond milk (not the boxed kind). You will find what soothes you.

    There are products at the health food store that are designed to protect gluten-sensitive people from gluten. I’ve heard that some people take it before entering unknown food territory. But to me, keeping supplements and such to a minimum makes sense from several standpoints, not the least of which is cost. Also, EVERYTHING you eat too much of, or EVERY DAY, and EVERYTHING you take as a supplement, especially over time, WILL cause something else. Even ketogenic diets, while wonderful for blood sugar and weight loss, have other effects on the body that will turn up later, given long enough on the ketogenic diet. Balance and good sense and sticking with real (not processed) food is the key. And be aware of EVERYTHING that seems to irritate your body. And don’t eat that thing, or eat it with other soothing foods, and don’t eat it every day, or very much of it. I’m convinced, like the Jaminets say, that “the dose makes the poison.”

  124. Paula says

    For nearly 30s I have had a chronic cough that doctors could not diagnose despite man $K of diagnostic tests. Prilosec didn’t help even though they claimed I had reflux. After two months off wheat, my cough is nearly gone. Also, fewer hairs fall out of my head when I shower. I found this article after some white rice triggered coughing and stomach pains Now I’m a believer–albeit a sad one. Thanks,

    Oh and, are there any enzymes we can take that help when some culprit sneaks into a friend’s lovely dinner or a restaurant meal?

  125. María says

    I cut out gluten for 3 weeks. I went in holidays last weekend and ate bread, rice, Chinese food, and even Mexican tamales! I feel terrible today. My stomach is distended and hurts terrible. During my 3 weeks without gluten I felt great! I have always suffered from ibs and stomach issues. I guess I can quite say I am intolerant to gluten right.
    My foods today have been gf but my stomach is still killing me. Any suggestions?

    • Amber says

      It takes several days for me to feel better when I just get a slight bit of gluten from something at a restaurant. I think everyone is different but I have read that gluten stays in your system for awhile.

  126. gottaride64 says

    Are there other foods that can create an autoimmune reaction/condition similar to gliadin?

    I have had Hashimoto’s for the past 10 years and was only recently diagnosed with gluten sensitivity last month. While I have previously eaten primal for the past 6 months, I just went full blown paleo last week. While I would like to add some foods back in, I don’t want to add back anything in that will aggravate autoimmune….. Any suggestions?

  127. Amy Lee Kay says

    I have had chronic migraines for 15-20 years plus gastrointestinal issues for the last 10 and finally went Gluten free my headaches reduced by 75% and alot of my stomach issues reduced as well. I do test negative for Celiac but have numerous other food allergies, I firmly believe there is a huge connection, I wish someone would figure out the link and how to determine it.

  128. Melanie says

    I am positive I am allergic to gluten o r react to it in some way shape or form but the doctors say I’m not allergic. About 7 years ago I started to get stomache pain after every time I ate food. It lasted for months and we couldn’t figure out what it was. After months of writing down what I was eating nothing was making sense. I could eat fruit and I would develop cramps.

    After 4 months or so I stopped eating large amounts of dairy because we figured that was making my stomache pain. After about a year of not having very many reactions I started to develop headaches.

    These headaches started happening about once every month or so, and after a few months it was a couple times a week and then every day. 6 months after my headaches started it became migraines slowly. Instead of headaches every day, a few times a week they progressed into migraines. 2 years after the stomache pain I was having migraines at a frequency of every day. No pain killers even touched it. I missed school all the time. My grades were declining and light was excruciatingly painful. My parents and I were worried I might need glasses or something else was wrong. I spent every moment I could in a dark room with no lights on holding my head and wishing the pain would go away.

    We finally went to the doctor and asked him if it was possible for me to have allergies to something. He of course laughed at me and declared that one couldn’t have migraines from food allergies.

    He did do some blood tests to satisfy us checking my white blood cell count. When the results came back he was astonished. He said that I was having an allergic reaction higher than normal and that I must be allergic to something.

    He never followed up or anything, so my family decided to completely eliminate gluten and dairy. Within 2 weeks I was no longer having migraines. We just decided that I was allergic and that’s that.

    I also diagnosed myself with keratosis pilaris because of the rash like bumps on my arms, face, buttocks, and legs. They disappear slightly I haven’t consumed gluten in the last couple months.

    I also have a butterfly shaped red rash on my cheeks that flares up every time I consume dairy, whether it is I drop of butter or a tablespoon of cream cheese.

    After five years of self diagnosis my reactions are only getting worse and I want to confirm my allergies. Now when I consume gluten I get bloated and have loose stool or even diarrhea for a couple days after. I get migraines and feel pukey. Dairy my face still reacts and I get massive stomache cramps.

    I am also sure I am allergic to sugar, mostly in the form of sugar beets, not cane sugar. I get stomache cramps from consuming sugar, Especially in a concentrated form (pop).

    I have developed hives several times that have covered my entire body for weeks and we are sure it was from red food dye.

    Now I tried to go see an allergy specialist and get tested a year ago, and after some tests, I was told that I am not allergic to wheat and dairy after they did some skin tests… correct me if I’m wrong, that doesnt mean anything.

    So suffice to say I’m frustrated. I can’t have certain alcohols, even if they are distilled and I certainly can’t have gluten dairy or sugar without reacting in some way. I am sick of being told by people that since it doesn’t show up on my allergy tests, therefore I am not allergic. Is there any way to confirm my suspicions?

    Thank you! Your article was very informative and I appreciate it.

  129. Kathleen says

    Your article was touching for me. You really explained the primitive methods for testing for Celiac Disease, and how someone can be suffering from different classifications of Gluten Intolerance. People don’t understand it can go undetected; neither do the physicians I have dealt with… Here is my story:

    I was tested back in late 2012 and I had been on a Gluten free diet for a few weeks. Nothing came up on my blood work due to having very little if no Gluten present in my system at the time of the test. I went on another year suffering from every symptoms I have seen linked to Celiac Disease/Gluten Intolerance. I have major digestive issues, IBS-C, motility/slow digestion, severe hemorrhoids due to all the visits to the bathroom, chronic migraines, high/normal thyroid results, painful menses, Premenstrual Dysphonic Disorder, depression, anxiety, peripheral neuropathy, insomnia, major joint pain in my knees, hypoglycemia, weak enamel/dental issues, interstitial cystitis, eczema/DH, my hair thinning (I had to buy hair extensions), severe inflammation, MAJOR weight gain (about 65 pounds), and the list goes on. I have also been extremely ill as a baby and child with what doctors suspected were Inflammatory Bowel Disease, but I was never tested for Celiac etc. I was always sick. I catch colds/viruses all the time; my immune system is extremely weak.

    The doctors could not figure out what was wrong with me, I am going to be medically bankrupt due to all the ER bills I racked up when I was in a time period without insurance. Then when I had medical insurance it was through Tricare for Young Adults, I couldn’t get appointments I would have to wait about 6 weeks, and have multiple appointments until I would be authorized referral(s) to see specialists. I didn’t get any help. Another year went by. I was jobless due to chronic health issues and flare-up days where I couldn’t get out of bed or away from the bathroom.

    My relationship has been torn apart. I had been with a wonderful man who I instantly knew he was the one I was going to spend the rest of my life with and have children. Five months into our relationship I fell severely ill and went on a roller coaster of horrors and frustration. I was sick all the time and I gained so much weight I went from 135 pounds at 5’7 to nearly 200 pounds. I thought I was dying or I had some rare form of cancer. I did not have any idea what was wrong with me.

    After I turned 26 recently I lost the Tricare plan and I was without health insurance again. I lost my job as I stated earlier. I was completely without a means to buy health insurance and get proper healthcare. Healthcare should be a basic human right, and we live in one of the only industrialized societies without a national healthcare system.

    My entire family is from Ireland; I only have four family members in the United States. Over there healthcare costs at the most $100 a month, and health issues are resolved quickly. I only just found out I am eligible for dual citizenship by birthright. All the money I spent in the US getting nowhere could have bought me a ticket and time over there with access to a better health system.

    In Ireland there is a higher presence of Celiac Disease and Gluten intolerance. I have extended family linked to the first full-blown Gluten-Free restaurant in the world.

    Anyway, I have been without insurance for almost four months now. I was deathly ill over Christmas this past year I racked up another ER bill. I decided to do intensive research. I realized with all the symptoms/chronic ailments and the failure of my doctors to properly test for Celiac Disease/Gluten Intolerance etc. that all the dots were connected. It was finally right in front of me; I knew I had some form of Celiac Disease/Gluten Intolerance.

    I immediately cut it out of my diet and created a Gluten free regimen, I stopped drinking and dining out as well… Within two and a half weeks I lost 17 pounds and all the inflammation started to go down. My stomach wasn’t swollen all the time anymore. All my chronic ailments and symptoms have disappeared. I had this extreme brain fog before I couldn’t focus on writing or school, and now I can think clearly again. All the neurological and psychological issues I had have started to fade away. I am starting to feel like a healthy person again.

    I am still with the man I love, but the damage has been done to our relationship after having to endure strain and hardships. He has seen me jobless, overweight, extremely ill, financially wrecked, and just at my total worst all due to the damage of living with an undetected illness. He still loves me, but he doesn’t discuss the future anymore. I understand, and I hope things keep progressing for the better so we can move forward from all of this hardship someday.

    My significant other took me out recently to a great restaurant that was not Gluten-educated. They still managed to have a Gluten free menu. It was a joke, and I researched the items on it later on and there was a great deal of cross-contamination. They used all sorts of gourmet spices and butters. Right as we finished dinner I ran to the bathroom, I was gone for 15 minutes. I was instantly ill. I felt dizziness, I got extremely bloated, I had terrible diarehhea, and I vomited. I went back to the table and I needed to go home. It took about a day or so to completely recover from my reaction.

    I can’t go out anywhere around here now, and my significant other is frustrated with me. It really does break my heart. He sees me getting better living a life without any Gluten food or products, but he still doesn’t understand the illness. He doesn’t understand how physically ill Gluten makes me. Now that I have all the answers, I don’t know how to make him or my family understand how serious it is that I cannot have Gluten in my diet or life.

    I am so hurt by the lack of education in restaurants and people on how ill Gluten can make someone. It is not a joke. And there is very little awareness toward Celiac Disease/Gluten Intolerance. People don’t realize the damage that can be done to a person if they keep going through life and not treating Celiac Disease/Gluten Intolerance. It can make them severely ill and debilitated. People don’t realize the concept of Celiac Disease as an autoimmune disease. I’ve spent my whole life ill, always catching whatever was going around, and have constant flare-ups and reactions to Gluten that I couldn’t understand.

    I don’t know what to do at this point, but to stay on a Gluten free road and document everything. When I have health insurance again I would definitely like to get the new comprehensive lad tests, Cyrex Laboratories that were mentioned to have my Gluten Intolerance and possible Celiac Disease officially documented. The only thing I can do with my significant other and family is attempt to educate them. Perhaps with time, everyone will grow less frustrated with my lack of spontaneity in dining out and living a Gluten-Free lifestyle. I am grateful for the support of my significant other and family thus far, but now I have to take everything a step further in getting their support to understand Celiac Disease/Gluten Intolerance. I am new to it, and it is a struggle to have to educate everyone. I feel like their patience is running thin with everything I have been forced to go through. I feel so alone, I feel so down, but I am hopeful.

    I am blessed to feel hopeful again, and I am lucky to have this issue as opposed to others. Celiac Disease/Gluten Intolerance is a controllable disease. It will be a hard life, but there are so many other diseases and medical conditions in this world that are uncontrollable. I have a future, and people that find they have Celiac Disease/Gluten Intolerance need to realize they are not the only ones. They are likely not to know many people with the issue, but we are all out here going through the same struggles. All we can do is become educated; take care of ourselves, and patiently attempt to educate society on something that a few decades ago was never even mentioned.

    We are blessed to live in this time, where there is minimal Celiac Disease/Gluten Intolerance awareness, but it is there. It will grow stronger with time…

    Thank you, Mr.Kresser, for a phenomenal article you have helped to better illustrate what so many people cannot understand…

  130. QueenJellyBean says

    I’ve been strictly GF since 2008. Still, my overall health reflects the problem of inflammation (persistant eczema, maldigestion leading to periods of fartiness).

    I’m very strict with gluten and dairy avoidance, rarely eat out (I keep it to sushi if I go to a restaurant), so I’m looking for ideas on what else to do to reduce eczema and maldigestion -after- already eliminating wheat and dairy for years?

    These are the additional things I’ve tried recently: 3 months ago no more caisein, no more soy cheese, dropped all legumes and grains including rice. Feels like a good change.

    I did the full GAPS protocol in summer 2013, I still make bone broth once a month.

    Currently reading Perfect Health Diet aka ‘PHD’ (thanks for mentioning it, Chris Kresser). When PHD recommended including 1 serving of potatoes and white rice daily, I tried it last week and got insta-eczema that hasn’t cleared in the past 6 days.

    What kind of a freak am I? Am I the only one who is totally gluten intolerant and can’t even do potatoes or 1 serving of rice for starch?

  131. Leah hipschman says

    Wouldn’t a gluten challenge work better if gluten was taken out of the diet for 4 months since the half life of the antibodies can last that long?

  132. Rose says

    Great post, Chris. It’s so interesting to read all the different reactions people have so thanks everyone for posting. It’s through reading other peoples’ comments on various websites that led me to try an elimination diet and discover that grains have been causing me numerous health problems all my life. I’m 32 years old now.

    I started with eliminating just the grains associated with CD, but then I found I was still reacting to the so called gluten-free grains like corn so I eliminated all grains seven months ago and I’m happy to say I have my life back!!

    What I was told by doctors was tonsilitis wasn’t at all, but one of the many reactions I have to being glutened (having a very swollen uvula and glands). Constantly peeling lips, painful bloating making me appear six months pregnant, swinging between constipation and diarrhea, anxiety, depression, dark scary warped dreams every single night without fail, paranoia, black thoughts (I’d often think of killing myself – not suicidal as such), brain fog and exhaustion to the point I can only describe as feeling like my soul had been sucked out of my body.. it was no ordinary tired! I felt rough all of the time and almost came to accept that I’d never feel like I would have any energy to do anything more than to go to work and feed myself. I had little energy reserves as I constantly suffered from adrenal fatigue and spent most weekends sleeping. Sometimes I wouldn’t leave the house as I couldn’t bring myself to face the outside world. Most of my symptoms I put down to stress until I went on an elimination diet.

    The worst reaction I had was the day after my most recent birthday when in addition to the above, I woke up the next day with wheezing and a DH rash which had only appeared a handful of times in my life. The day of my birthday I ate bite sized pieces of gluten loaded treats throughout the day. My reaction the next day was so severe that I went on a quest to discover the cause as I finally sussed I was having a reaction to something I’d eaten. All of the usual symptoms had been amped up and exacerbated.

    I’m on a very strict diet now as I also have oral allergy syndrome. I can’t eat sweet potato (causes IBS symptoms), caffeine, chocolate, legumes, most nuts and raw fruit. I avoid eating chicken and pork as these are normally soley grain fed and I also avoid eggs. I have to be very careful with my vitamin and mineral supplements as so many contain corn starch etc. Finding alcoholic beverages is a challenge so I tend to stick to sparking wine or champagne and straight sambuca on ice! Grain vodka makes me very ill as I discovered earlier in the year and I’ve recently found out that commercial ciders are a no no as these contain syrups and starches derived from grains. This all makes me sound like I’m a big drinker but I’m not!

    I did embark on a three month gut healing plan where I also eliminated dairy. I reintroduced this and am fine and only eat a little anyway. I know that from what I’ve read many people who can’t tolerate grains can also have problems with dairy.

    Good luck everyone on your gluten free / grain free journeys – it’s a challenging yet rewarding one :-)

  133. Ian says

    I’m sure I have it. I can feel it and also tested off the charts when I had my food allergy panel done.

    Any time I eat it I start getting skin inflammation.

  134. Kimm says

    I attempted the 90 day gluten free challenge. However, I just found out that several of my daily medications contain wheat. So, that explains why I feel a little better from eliminating almost all the gluten but I am still taking some in every day.
    I had no idea that their was gluten hidden in my antibiotics and my daily medicine. Every time they switch manufacturers I have to call and find out if they are gluten free.

  135. Simone says

    I’m reporting back to say I am a lot better. It took about 2 months of pretty strict eating. I notice when I have a bout of IBS it takes about 2 months for me to heal. I’ve noticed this pattern.

    I have been able to introduce back small amounts of most food groups (including dairy, nuts and beans) without issue.

    What I am continuing on with now is really small meals, minimal simple carbohydrates, and as soon as I feel a bit unwell, or full, keep to a very strict simple diet on that day. I really have become more attune to when my body if feeling bloated, or not 100%.

    I suspect I might have had an ulcer (which have had on the verge before) and it has healed, but if I eat too many foods that are not good for me, then it will flare up an inflammation.

    I don’t think I am necessarily gluten intolerant, I think I am ‘everything intolerant’ when my stomach is overstimulated from too much processed foods.

  136. evonny says

    I am having a lot of digestive problems but they are intermittent. I had terrible stomach pains about 3 years ago which went undiagnosed despite a number of tests and I tried going gluten free for 3 months with a bit of relief but no increase in symptoms when I started eating gluten again. The pain gradually wore off over about a 2 year period and I was ok for about a year. Recently my mum got really sick, I got stressed and it all started up again. I am trying to track the relationship of the symptoms with food and one of the obviously bad foods seems to be pasta although bread and other gluten foods seem fine. Does this make sense to anyone? What is in pasta that is not in bread, that I might be reacting to? if anyone knows I would be most grateful to hear. Thanks
    Am having a lactose intolerance test next week.

  137. Emily says

    After having my first child, I developed extreme pain in my abdomen after eating certain foods. i figured it was a dairy intolerance, so I cut dairy completely out of my diet and things got better for a few months. The symptoms returned a few months later, even though I hadn’t been eating dairy. The next step was to eliminate gluten from my diet. I lost 60 lbs, and the pain went away almost completely. I find now, if I have traces of either in my diet my joints swell, i retain a lot of water, and my abdomen is very painful and bloated. i have not done any official diagnostics yet, as they require you to eat the bad food for up to six months and I’m not willing to be in so much pain for that long.

  138. Aisling says

    Well, I have been tested for celiacs and it has been negative. I didn’t think anything of it. I have been suffering numerous symptoms, tiredness and dizziness followed by sort of changes in bowels. Another symptom I noted was I was really bloated. So bloated but I never gained nor lost weight. I have been to countless doctors who try say it’s all in my head. One doctor said id a bit of a problem with blood pressure. So I cut out gluten to stop the bloating to see if it helped. Not entirely but soecificlly bread. Then today I ate some nice salad on white bread. It was delicious, however no less the one hour I go to the toilet with diarohea, ugh. Now, I have eaten brown bread and gluten containing food here and there but the white bread I had cut. As I tested negative I’m not sure. My crp level came back a little abnormal which suggested inflammation. Secondly, I already have an auto immune disorder since I was young and have read the link between leaky gut and auto immune disorders. Do you think I’ve an intolerance? I have a friend who is celiac she had loads of gastro intestinal issues. Another terrible symptom I have is brain fog, lightheadness and palpitations. Every test for everything else has come back normal so I’m at my wits end. The fact I ate bread today and suddenly followed by diarohea concerns me.

  139. Stephanie says

    I’m slowly starting to believe I too an gluten intolerent. It seems like it’s just something that has slowly happened to my body. That’s what I dont understand. This is so frustrating. I havent always had this. (I’m 32, female, healthy)
    After I eat, I’ve been noticing sharp, sometimes stabbing pain in my lower abdomen. And LOTS of gas. More than what should be considered normal.
    I’ve been more irritable lately and just feel tired.
    Headaches too…and I used to never get headaches.

    So, today, I packed myself a nice lunch. I thought to myself, ‘I will eat healthy all week and see what happens.’
    I normally eat pretty well. But I do enjoy pizza, cheeseburgers, hot dogs, etc).

    So, I drank a cup of green tea this morning, along with my Kashi Pumpkin Flax Granola Bar.
    Well, not 15 mins later…I started having gas and severe bloating and cramping in my stomach.
    Green tea usually eases my stomach. So, I’m thinking it was the granola bar. I picked up the wrapper that I had thrown away and i see the first ingredient is whole wheat. It also has barley and rye in it.

    I’m going to TRY to go on the Gluten Free diet and see if I feel better. Then, I will know.
    Again, this is so frustrating…as I have always enjoyed the freedom to eat what I want.

    Why are we hearing more and more about gluten nowdays?
    Are they putting something different in our foods? Are they processing it differently today than years ago??

    • maureen says

      This is how I feel, Stephanie. What’s going on to make so many people sick? I haven’t always been like this. I do know that taking probiotics has been a godsend. I buy high quality ones and take them religiously. I have a feeling I’d be a lot worse off if it weren’t for taking them but I still get the same reactions that you describe when I eat wheat.

  140. laura says

    Question: Once eliminating wheat and other cross-reactive foods for 30 days, if I am able to tolerate the reintroduction of a food, what additional damage could it cause if my symptoms are no longer noticeable? In other words, can the reintroduction still be damaging my gut to the point where the either the sensitivity returns (where it’s so mild I don’t notice it) or worse, an autoimmune disorder is created. For your information, I was diagnosed with Hashimoto’s 10 years ago. I eliminated refined flour and sugar 9 months ago (and feel better) and further went on to eliminate grains and legumes 2 months ago. I am struggling with whether to further eliminate nuts and dairy without going overboard, yet I am also concerned with thyroid function. Any guidance would be appreciated. Thanks for everything!

  141. Jennifer says

    Over the summer, my son started having problems with diarrhea. At first, we thought maybe he had food poisoning, but then it started happening with greater frequency, especially after eating foods like pizza. We tried a gf diet for a few weeks, and his symptoms resolved. On the advice of a friend, we put him back on small amounts of gluten before we had his ped order a celiac test. The ped suggested a dairy free diet, which also made his symptoms lessen. He tested negative for celiac, so we found an integrative medicine specialist to perform allergy testing. Gluten, casein, egg, and a few other things were his main problems. After about 6 weeks gluten free, we were traveling and he accidentally ate some gluten in airplane peanuts (honey roasted). He was mildly nauseous the next morning. During the day he ate a twizzler. That night he had severe nausea and vomiting. By the next evening, after just a day with no new slip ups, he was fine again. We haven’t tested the diet since. Whether he has CD or just an intolerance to gluten (and dairy), eating those things makes him violently ill now, so we won’t be going back.

  142. melanie says

    Hi Im sure I gluten intolerance. When I eat anything with gluten, after about 20mins my heart pumps really hard, I feel very tired and grumpy. I could fall asleep. I have major gut bloating and cramps. Does anyone here have this reaction? I have been gluten free for 4 years, but sometimes I have gluten as I did two days ago, now I feel like Im coming down with gastro. Ive even had the chills! I dont have gastro. This is crazy! I also have the heart thing when I eat corn ,rice and oats. After reading these pages, I now know why. I would really like to know why my heart pumps really hard and if anyone else gets this symptom. Looking forward to some replys thankyou Melanie

    • Leslie says

      In 2001 I finally consulted a doctor about my heart palpitations and had an EKG, which was normal. It was August and it occurred to me that I had been eating a lot of corn on the cob — almost daily. In recent years I find that eating popcorn or corn chips is likely to result in an immediate bladder infection, even if the corn is organic. A friend told me that because of cross contamination even organic corn is likely contaminated with genetically modified corn. I don’t know if GMO is the problem or corn in general, but I now generally avoid it.

  143. Ford says

    Last March I read Dr. Davis Wheat Belly Cookbook and decided to try GF for a while. The recommendation was 5 weeks and I found relief at about 5 weeks.

    Symptoms included edema in the ankles/legs below the knees. Peripheral neuropathy in hands and feet becomes extreme when I eat wheat based foods. The reaction is uniform in all extremities and a sclerosis has been ruled out. I’m taking 3 small dose meds daily to control blood pressure. I am not diabetic but have been warned for many years that I’m prediabetic (age 57). I was wearing support hose and taking an occasional diuretic to control the edema, which helped. After several months of wheat free, my edema symptoms are gone and the neuropathy is reduced but not eliminated. When I get into some wheat based food, always by accident, I will suffer with the consequences for up to 3 days.

    I am not dairy free but never drink milk. Cheese and yogurt is a favorite of mine. Beer used to be standard beverage of choice but now only if wheat free (and even then rarely).

    The ebbs and flows of the neuropathy symptoms are a huge concern. I’ve been playing with diet since march and lost 35+ pounds in the process, which may also have contributed to the improvement in edema symptoms. I now never wear support hose or take a diuretic. My fingers and feet now have some ability to feel sensation but the problem has not been restored to “normal.”

    Classic Celiac disease symptoms do not involve the gut, but some Celiac sufferers do experience some of the edema and neuropathy symptoms.

    How do I isolate the gliadin from gluten, etc., to determine the real source of my problems?

  144. says

    I’ve got DH/Dermatitis Herpetiformis due to my gluten allergy. It hit me out of nowhere with no warning and it wasn’t until a full 6 weeks into an extremely overwhelming, itchy, uncomfortable rash, that I figured out what was going on. A couple week after that, the rash is very slowly subsiding but I swear…I am beginning to understand how one might get to the absolute end of their rope with this.

  145. Chris Smith says

    I have been sick for years (about 7). I have had a host of symptoms but no diagnosis. Many were Lupus like but not completely. (Pos ANA followed by a neg, hemorrhage in my eye, irregular EKG, Raynaud’s like symptoms in hands and feet but no clear line of demarcation, fatigue, depression, headaches, anemia, diarrhea, skin rashes, flakey skin, swollen lymph nodes, brain fog, ringing in my ears, dizzy spells, joint stiffness and swelling and shrinking in my fingers). I didn’t think any of it could be diet related since I ate healthier than most people I know. I have tried to start eating gluten free. The first day I felt great but the second day I felt miserable again for a solid 24 hours shortly after breakfast. After reading the pecan and walnut packaging (the only difference from the previous day) I found out they could have gluten from the processing. Since eliminating that as well I feel better again. I am very quickly feeling clear headed, energetic and happy again. While it’s too early to tell if this is the problem and the cure I am impressed with the results so far. It seems like I am tolerating dairy, corn, and basmati rice normally. The verdict isn’t in on Irish oatmeal yet. The McCann’s version didn’t seem to make me sick the first day even though it isn’t guaranteed to be gluten free. I wonder if the cleaning process of the factory plays a part. This is only day 4 for me.

  146. says

    sir,ive been suffering from celiac disease since the age of 3,currently i am of 22….till the age of 18 i was on gluten free diet…and if i used to consume it,i used to get severe abdominal pains…but as i went out to another city for studying…i started intaking wheat products but i since the age of 18 till today i hvnt got an abdominal pain,though i feel very weak…i am undergoing a treatment from,sanjay gandhi hospital(pgi),lucknow…and doctors scold me that if i continue like dis ,i will soon b a cancer patient….is it true..i am scared..
    what should i do??

  147. Vanessa says

    Chris, I would love for you to address the Cross-Reactive grains in an article by itself. I have had the Cyrex lab tests and show sensitivities to gluten, dairy, rice, corn, yeast, and coffee (which i have never in my life drank because I hate it). I’ve been told to NEVER EVER AGAIN consume these things because they will harm my digestive system and I’m testing positive to having problems with these foods. No 30 day test of reintroduction is ‘allowed’. There is basically NO information or research out there other than anecdotal stories, and opinions, to say these tests are right or wrong. Or that once positive, always positive, and more importantly, always problematic. I feel I’ve been in a tug of war with myself for months. I’ve been very strictly Paleo for 7 months.

  148. Jacinta says

    Hi Chris,

    This is one of the best articles I’ve ever read in regards to gluten intolerance. I’ve suffered from this “on-off” my whole life but am always healthier, more full of energy, less lethargic and less bloated when I eliminate gluten, but also diary. At one stage, I was a diet and the only “grains” I could eat were corn, potato and buckwheat! This was to eliminate on going nausea I had been experiencing for about 2 yrs ! That was really hard! I’m so glad there is someone out there explaining other explanations aside from celiac disease – for years doctors did (and still do) ignore any attempt I give to explain my health problems! Thanks for the grant article !

  149. Lucy J says

    Hi, around 18 months ago I finally came to the realisation that my stomach issues weren’t normal. After living with them for over 15 years (I’m 34) My doctor told me I had ibs and to live with it. I also was diagnosed with iron deficiency anemia with No obvious cause. After feeling like death warmed up when staying at a friends and having eaten more bread than normal, porridge and pasta I decided enough was enough and thought I’d give cutting wheat out of my diet. Within a week I felt amazing. Having been able to count on one hand the number of days my stomach felt normal before I suddenly felt normal most days. I couldn’t believe what I’d put up with! Eventually I realised it was oats, barley and rye too. I cut them out and felt great. I went to my GP who ordered a celiac test (I told them I wasn’t eating gluten but they did it anyway), it came back negative. As did a second one. I didn’t care, I felt great so stayed off the gluten. That was until I started having protein shakes for the gym. I ended up with severe neck pain, like you can’t imagine, brain fog, palpitations, anxiety, depression, dizziness. I realised (after far too long) that dairy proteins and egg proteins seemed to be causing it. I cut them out and a year long bout of neck pain ended within 2 weeks, that was 6 months ago. I cannot describe how good it felt to feel ‘normal’ for the first time in my life.
    My GP sent me to the dietician after a lot of persuasion, she recommended a full elimination diet as I’d never really done it properly before. So that’s what I’m in the middle of now.

    I was so shocked to find I reacted to fructose and corn, I also reacted to oats within 2 hours of eating them and then took 8 days to get back to normal. Barley reacted within 1 hour. Milk caused me to have 2 days off work but cheese wasn’t too bad. Now here’s where it gets weird, I’m 36 hours into eating Wheat and I’m yet to have a stomach reaction. Is this normal?! Could it be a delayed reaction? Or could I just not be showing symptoms? It’s 18 months since I last ate wheat. I am getting a bit of insomnia and I have slight neck pain and a little nausea when I eat but that’s all and all that could be the aftermath of 2 months of an elimination diet! Has anyone else noticed anything similar? Might a reaction to wheat take longer?

    Should I ask my dietician for another celiac test with me eating gluten? I’m scared to carry on eating wheat in case it does any damage to my stomach in the long run. I am just so shocked that my belly hasn’t reacted to wheat!

    I’ve still a way to go with the elimination diet but I’m getting there. Hopefully will be done by christmas :))

  150. Trudy says

    After suffering with ulcers and gastritis (caused by excessive Advil use), my naturopath suggested I try going grain/wheat/dairy free to allow my stomach to heal. I can now eat a bite of grain every now and then but too much will cause my stomach to burn and brain fog unlike anything I’ve ever felt before. This evening my son wanted bread crumb coated chicken for supper and I ate half a breast with the rest of the plate full of vegetables. The burn in the middle of my chest is pretty bad, I feel like I have a lump in my sore throat and brain fog. Oh and if I eat dairy?? My heart will skip beats (definitely my heart and not my stomach because my pulse is irratic) to the point I am light headed.

    My family doctor is not a firm believer in gluten sensitivity but does support my decision to heal myself naturally. And I guess that’s all I could ask for :)

  151. Rachel says

    I developed some serious digestive issues after having mono a few years ago. I had debilitating stomach bloating and cramps and serious constipation, which also led to weight gain that has really upset me. All of my tests for gluten intolerance have come back negative but I find a huge difference when I do not consume gluten. I am still working on the weight loss, it doesn’t come as easy to me as losing weight did before I had these issues for some reason. Although I don’t eat gluten, I occasionally have some stomach issues and also do have swelling of my knees, hands, and face. I dont understand if this swelling is connected to my gluten intolerance or not though since I religiously do not eat gluten. I have been to many doctors for my digestive issues and they all generalize and tell me its IBS (or one very rude endocrinologist told me I was depressed which I know that I am not). But through my own research and trial and error I have found it to be a gluten issue. It is very frustrating to not get any answers. Any advice from individuals experiencing similar issues with gluten intolerance/weight gain/swelling would be greatly appreciated!! :)

    • Simone says

      Rachel, I have similar issues to you, severe bloating, cramps, constipation etc

      I also got an extreme reaction to probiotics, apart from becoming severely ill, nausea every day, all day, flu symptoms all the time, dizzy, brain fog, joint pain, hair loss, I also puffed up like a balloon on my face. I also become even more intolerant to food, I was on a FODMAP diet, and then even a stricter chemical related diet, where I could not even have herbs as flavouring and only one type of apple with the skin peeled off, as fruit! I was not loosing any weight even though I was on these strict diets!

      That’s when I looked outside my diet (food) and realised it had to be something else. Probiotics were magnifying my symptoms ten fold.

      I am still finding it very hard to lose weight, but I did loose a bit once I went off the probiotics, but I also went travelling in Europe, so I was walking heaps, drinking lots of water and getting heaps of Vitamin D, which I am low in. Vitamin D is very important for people with IBS symtoms.

      So I would look outside food…is there anything that you are consuming that is not food, such as supplements, headache tablets etc? Take at other factors as well. I didn’t even think of them at the time.

      • Simone says

        PS – I am so much better since off the probiotics! That was a nightmare…but I am not cured by any means. However, I would suggest seeing a dietician and maybe getting them to put you on a FODMAP diet. That does help quite a bit as well. I have lots of triggers, beans, dairy, spicy, acidic foods, ibuprofen, probiotics, sugar, eating too much (have to have really small meals), eating too fast etc

        Exercise is really important, but I think low impact is better, walking, cycling etc. Anything where you jump around can be a bit of an issue…or at least for me.

  152. Becky says

    Yes, there are cross reactors, and I think coffee is one. Gluten is indeed everywhere. I made the decision to acknowledge that gluten is in the world, but that I would on occasion eat out, and travel, and give my best effort to knowing where gluten resides and not knowingly eat it. Several restaurants in my town are on top of the whole gluten free issue. When traveling, I have found some amazing gluten free restaurants, even Italian ones.

    I agree with you that some people find it easy to give up foods that make them sick. Others desire to keep eating the food and suffer the consequences, knowing exactly how NOT to have those consequences. But usually the foods that make us sick are also foods we enjoy. We eat them a lot, which is why our bodies over time begin to be less able to process them without becoming ill. That is the decision point for each individual. In fact, I have read that the foods that are worst for us are the ones we crave the most, because of the temporary high they produce … we crave the feeling the food gives us while eating it, even knowing that we will pay later.

    You say that your husband doesn’t react negatively to any foods. Yet he has Hashimoto’s. It could be from the gluten. It could be something else, or a combination of things. But it is very probably a food. Is it worth it to him to try and find out? His choice. I am not celiac, and could eat wheat if I chose to, but apparently eating gluten multiple times a day for my whole life was destroying my thyroid gland, unbeknownst to me. I don’t eat gluten because of my thyroid, not my digestion. The digestion tends to be visible; autoimmune conditions more hidden, until they become full blown and symptomatic. Antibodies can only be seen blood tests. I will tell you I was stunned (and willing to continue to not eat wheat) after watching my Hashimoto’s antibodies go down to zero.

    After almost three years of grain free (except for a some rice a la Perfect Health Diet), it is very obvious to me that each person must find their own “off limits” foods. Testing is often inaccurate or vague, and it would be a shame to develop an avoidance/paranoia about a food that isn’t harmful for you, but is indeed harmful for a family member, just because a test hinted at it. But a test can be used as a guide.

    Gluten-free products in general are high in carbohydrate and low in fiber, and can introduce other metabolic and digestive problems. Cutting out processed foods altogether is difficult but desirable.

    It isn’t easy, but neither is it easy to live with autoimmune and metabolic diseases. I watched the PBS specials on President Kennedy this week, and it turns out he had colitis his whole life. This is a condition we now know can be entirely avoided with diet. The strong drugs he took to relieve the bowel inflammation destroyed his lower spine and left him in almost constant pain from his back. He developed Addison’s disease (an autoimmune condition). The only thing that gave him relief were strong pain killers, offset by amphetamines. He had a doctor administer those to him in preparation for meeting with Kruschev about the nuclear arms treaty.

    I have been musing about this, and wonder if the President might have enjoyed good health had he known about GAPS, SCD, gluten free, dairy free, or other protocols for the colitis that set off his chain of illnesses. He should have been easily able, with an elimination diet, to find out which foods to avoid. We have had for generations in our country, though, the mindset that people should be able to eat anything, and that medicine should just be applied to symptoms without regard to diet. That is changing, but only because people are taking matters into their own hands and finding what works for them.

    Knowledge gives us some important tools to begin to work with. In the same way that you refrain from smoking and excess alcohol use because of their known health effects, certain foods that you discover are harmful for you, begin to look like toxins. It doesn’t take long before you feel so much better without the food, you really don’t miss it.

    • Robin says

      Oh wow,… Becky, thank you. I actually think I get what you are saying.
      I don’t know why I was thinking this way, but for some reason, every time someone said, GLUTEN IS MAKING YOU SICK, digestion was all that came to mind. And I could honestly say, no, gluten does not seem to effect us. Cause it didn’t upset our stomach.
      Soy, (again I firmly believe was our initial trigger for Hashi’s,) I could understood effected the Hashi’s independent of our stomachs. Why I couldn’t make the same connection with the gluten seems silly. But I think its because I have always heard complain of the effects gluten has on their stomach, bloating, IBS… I’ve always thought of gluten as a stomach issue.
      I did order the Cyrex Labs array #4 yesterday. I figure, if he test positive for foods, then we will definitely avoid those. And if he has food triggers that mimic gluten, then gluten is a trigger.
      So my final thoughts are, wait on the tests. I will feel better either way, just knowing that our reaction is warranted. We will do whatever we are able to do. He has our support and the changes made for him will be whole household. Can’t say we any of us are excited about it,… ha ha, but he is not alone in this. Hashi’s effects on him effects our family and so will his treatment.
      Becky, thank you again for persisting in helping me deal with understanding this a bit better.

      • Becky says

        Well, gluten free can make a huge difference for some people. And that difference makes it worthwhile for them. As a family member, please understand that a wheat-avoiding person is serious about it BECAUSE they feel better and because a medical condition is resolved for them. I now have much more respect and consideration for people who avoid a food, now that I am one of them!

        Standing in line at a coffee shop or at a brunch buffet, I see people loading up on pastries, essentially sugar and wheat flour. If they are not harmed by sugar and wheat, that is wonderful. But many of the people chugging down the refined carb items are quite obese, and many don’t look exactly happy, like they’re thinking, “Oh, I like these so much. I’ll feel like crap later, and I really need to lose weight, but oh, I like these so much.” (Hey, I recognize it because I used to be one of those people!) Refined carbs put me right to sleep, and if I wasn’t near a bed, I actually looked around for flat surfaces to lie down on. Ha!

        BE SURE TO FOLLOW THE TEST INSTRUCTIONS EXACTLY. To test for gluten sensitivity, you have to have been eating gluten all along before the test. If you stop gluten before the test, it won’t be accurate.

        As well, if you and the family decide to eliminate or reduce grains, be sure to Google “resistant starch paleo” and also check out the Perfect Health Diet. The grain-free diet is evolving, and you may need to add in some potato or tapioca starches, or black beans and garbanzos, to get resistant starches. The main thing is not to eat a TON of any one thing, just because it’s easy or tasty. That’s how humanity went so wrong with wheat!

        Good luck!

  153. Robin says

    Thank you for taking the time to respond. I have a couple fears about going gluten free. First, failure. Gluten is everywhere it seems and to know if gluten is the problem you have to be 100% gluten free. Plus there are cross reacting foods that mimic gluten and those would also have to be eliminated. And going gluten free isn’t cheap or convenient. I’m all about making my family, not just my husband, but my whole family healthier, but I’m trying to be real about this too. They get bored with their food options now. That’s why I thought a test that said, these foods right here are off limits and the rest are fine would be better. I don’t want to give up rice if rice is fine. I don’t want to give up potatoes if they aren’t the problem… And coffee… Who wants to give that up.
    I’m not trying to be difficult. It’s not as easy to do as it is to say. At least that is how it seems.

    • Amber says

      I felt the same way but for my husband and I we know and have experienced how much better we feel being gluten free. I have found that I don’t crave all the carbs that I couldn’t live without before. I also find that food tastes better and there are great gluten free products and recipes on line. We have chosen not to use many of the gf products except on rare occasions. I do occasionally treat myself to some ice cream as I have found a few that do not contain gluten and I don’t have reactions to dairy.

      Ultimately you have to chose but I have found that I actually feel like a normal person! I also don’t see this as a diet but an actual lifestyle. Good luck!

  154. Becky says

    Stop! You don’t need expensive tests. Try giving up gluten. My Hashimoto’s antibodies went down and down, then completely away after I went on a paleo/Perfect Health Diet (some rice). The Perfect Health Diet is an excellent book. You need some carbs for good thyroid health. My doctor said that stopping wheat probably is what got rid of the Hashimoto’s antibodies. You are right about soy … it’s a goitrogenic food and very bad for the thyroid, and health in general.

    I posted about my Hashimoto’s going away here.

    • Robin says

      It would be easy to give up foods that made you feel sick. But giving up things that you enjoy is a whole other deal. He doesn’t react negatively to any foods.

  155. Robin says

    Last year my husband was diagnosed with Hashimoto’s. I suspected soy was the root of our problems since we had switch from dairy to soy milk two years prior to the diagnosis. So we made a great effort to not consume soy or products containing soy. We use natural supplements to treat the hypothyroidism it created. We thought things were going well. But 7 months later we still had antibody counts in the 450 range. We found ourselves drinking whole milk and consuming more breads over this summer. His labs last week showed antibodies back up to 750. So we are again, cutting breads and lactose out of our diets.
    I’m considering having Cyrex Labs perform the array #4 test. I assume that if he test positive on several foods that he would also then test positive for sensitivities to gluten. I do not want to cut out foods that are not necessary. He doesn’t have any reaction to eating foods. Milk does tend to make the man gassy but other than that, he has always ate whatever he wanted without issue.
    My goal is to eliminate the Hashi’s triggers. To maintain his health and our lifestyle. His original antibody count was over a 1000, so we are lowering it, but obviously we haven’t eliminated it yet either.
    Are we on the right track with the Array #4 test?

  156. Brian says

    I am sure people will call BS on this one. I was overweight and at risk for type 2 diabetes. I went on a carb restricted diet and in the course of research, found a paleo book on amazon that looked like an interesting read. Humor and the logic behind it made sense. I cut gluten out of my diet, but did not go paleo (I love cheese WAY too much). After two months, I no longer had acid reflux that I had been on meds for years. I quit taking my allergy meds and have not had allergies since. I lost 65 lbs. The biggest thing for me though was the depression. I was diagnosed in the mid 2000’s as having clinical depression. It’s not the stay in bed melancholy kind, though that can happen. It is characterized by mood swings and circular thinking to trap myself into bad thought patterns and suicidal thoughts 4-5 times a day for no reason. It’s now gone. I no longer take meds for them. I had heard friends with CD mention there were ties to depression and gluten, but I wrote them off. But here I am thinking clearly for the first time in my life that I can remember. I accomplish/finish things now. I don’t freak out when something unexpected happens. Even my family says I speak differently. They like Me 2.0. :) Some reading on microbes for s different story helped shed some light on the issue. My issue was called depression because of the same root cause, imbalance of serotonin in my brain. In this article, they stated that almost 95% of your serotonin is generated in your gut. I can tell the difference, too. One day, accidentally had some gluten and within 2 hours wanted to call my boss and quit and start a fight with my neighbor of 15 years over parking, on a Saturday! I just had to stay home and ride the rest of the night out once I knew what was going on. I feel kind of bad, it makes me feel like I’m high maintenance. I don’t want to be “that guy”. My friends and family help remind me it’s no different than them having their food allergies. If it’s a choice between being “that guy”, and the suicidal whack job I was before, I’ll be “that guy”. I’ll try to tip more though out of guilt. :)

  157. Jessy says

    After 3 months of being heavily bloated, nautious and with a weak bladder I visited the doctors probably up to 10 times, took more than 5 different blood tests with Ceolic disease being one of them however it came back negative. After speaking to a lady who has the disease she told me it was possible to have allergies to wheat and gluten even without testing positive to the disease so I decided to cut pasta, bread, noodles etc out of my diet for two weeks and I immediately felt better and my stomach shrunk back to its normal size. 2 weeks later I thought I would have a cheat day and made some stir fry noodles with soy sauce. Big mistake. After 20 minutes of consuming I felt a strong anxious feeling across my chest and I struggled to breath. I ended up going to the hospital because I was so scared. The nurse and doctor told me I was just suffering from an anxiety attack and it was not an allergic reaction because I wasn’t swollen or blue in the face. I continued to stick with my wheat free diet after that and a few weeks after I consumed spring rolls .. Once again I had this overwealing feeling on anxiousness across the chest and struggled to breath for about half an hour. After putting two and two together I figured I must have this disease however due to my severe reaction there is no way in hell I will eat gluten for a month just to be diagnosed.

  158. Kelsey Olsen says

    I think I might be gluten intollerant. But I do not had the runs like everyone seams to be posting. My stomach cramps up and feels like its going to burst at times. I am on a dairy free diet as I have been diagnosed with lactos intollerents when I was 8. I have also been been expreamly constipated and have been taking probiotics to help everything moving. But I too have had non stop colds and sinus infections for a couple years now. Does this sound like I could have gluten intollerance? I have been strugelling with these stomach pains for 2 years now. Searching for answers.

  159. Lisa Chamberland says


    I’ve been paleo for 3 weeks now while doing a challenge with my daughter. I’ve not had any real issues except bloating which I thought was normal for me. I ate pasta this weekend and my stomach started killing me. So I’m back paleo and will try reintroducing later. Does this mean I’m intolerant?

  160. Steph says

    I’ve been gluten free for a year. the first day without gluten was a dramatic improvement. two weeks into it i accidentally ate a tiny amount and felt sick for 2 days; sort of like the flu but a stabbing pain and feeling like im very hungry. i immediately had worse period cramps. (it was already debilitating.)

    I tried a cookie recently, and barely had a reaction to it. wondering if i have gluten senitivity.

  161. Joanie Moore says

    I believe I was celiac since birth. I was born with a dairy allergy, had total glandular breakdown when I was 8 and needed growth Hormone shots. Had cortisol problems, adrenal shut down .. All sorts of probs and they could not figure out why I always had this distended stomach. They had dietitians talk to us an I ate the right foods, but it didn’t work . If they only would have tested for celiacs then. I have so many problems now.. My body is that of an old woman’s , I have 4 seperate types of arthritis, fibro, fatigue like mad, migraines and chronic constipation my whole life.
    I stopped eating wheat when my sister almost died of celiac disease. It was a wake up call for us all. The first time we had ever heard of it. Back in 2000. As she healed and we learned I figured that my symptoms (some of them at least) might be from that. Stopped eating bread just for the heck of it, as a start I guess. Then I started getting worse. Stopped eating more gluten products and then went to go get tested. They did the intestinal test and said nope, you are fine. Wtf. So I went to another place and got the blood test, they asked if I was eating wheat? I’m not.. Not that crazy. Well your test will prob come out negative

    Long story short .. Years later I am still hurting and having horrible migraines. Am I doing something wrong? I don’t eat oats because they do make me feel ill, but I am so careful to stay away from gluten.

    I recently read somewhere that things like eggs, potatoes, coffee, etc can cause the same reaction In celiac bodies.. Is that true?

    Sorry for going on like that..

  162. Mary says

    Thank you for writing this article. I started having bad cramps about a year ago and I have another medical condition so take strong pain killers but the pain would stop me in my tracks even when I was taking the max dose after 3 months of going to the drs and them saying we will get to that but we need to discuss your eds, after 3 months and the pain kicked in whilst at the drs they told me to get on the bed and the dr said it wasn’t my stomach( connective tissue problem means it doesn’t empty properly) but more my gut, she left it at that!!! I realised that the food your body struggles with is wheat an dairy ( couldn’t give up dairy I’m a chocoholic) so I can of wheat not realising the extent of what contained wheat but after a few weeks I was more energised and happy( I’ve been anaemic some 15 years and the tablets make me worse) so I went back to the dr and she tested me even though I’d not eaten wheat in 2 months the test came back negative! I started to eat wheat again to be tested properly and it was horrible but again the test came back negative and I was told I was none celiac intolerant and to just not eat wheat… I’m back on wheat diet as I’m strapped for cash and I’ve noticed my mood swing are very bad and my period is late and I look a couple if months pregnant!!! I can’t wait to get pak so I can get the food so I can be me again!!

  163. karen says

    Hi i tested negative for CD when I developed symptoms at age 50, 7 years ago, but after much trial and error I came to my own conclusion that I have a gluten sensitivity. I have a delayed reaction of 1 to 8 hours then have a tummy ache, headache, nausea etc for at least 2-3 days. I make my own gluten free bread etc, but funnily enough I can eat certain types of pastry with no effect. The doctor says its I.B.S. and gluten is a trigger factor. I cannot for the life of me understand why my whole life I have been able to eat bread, cakes etc then when I turn 50, bam, that’s the end of it. and sometimes I still cheat, I’m only human after all, but of course I suffer after wards.

  164. Julie says

    I would love to have a full panel of testing done. I have dermatitis herpetiformis and it isn’t just caused by gluten. Rice and corn are also culprits. Also rice and quinoa are extremely hard on my stomach and after just a small serving I feel awful a few hours later and then the next day I am painfully bloated. My daughter also has issues that only seem to get better without gluten. :/ has anyone had the testing done since this was published?

  165. dw says

    20 years ago I started getting allergies, 15 years ago chest pain and brain fog (turmeric oddly made it disappear, try it!), 12 years ago joint pain in my knees, 10 years chronic sinus problems and my eyes would swell up, 5 years ago teeth pain caused by sinus problems, horrible snoring, 2 years ago every joint in my body ached (worse in the morning), muscle pain and what feels like shin splints but in my forearms. At some points it was hard to lift my legs to get in the car. 6 months ago I got the “itchy ear” someone else talked about which I had no idea was caused by this. I was diagnosed with Hashimoto’s. I went gluten free for 2 months and it all disappeared. I went back on gluten and for 3 months and 15 pounds later was told I did not have celiac. Went off gluten again, felt better but months later started feeling achy in the morning again and figured out the dairy was doing it. I have not lost a pound but gained another 5 since I’ve gone gluten free. When I mistakenly eat even the slightest amount of wheat I feel fine for the rest of the day until I go to sleep. Sinus problems came back,eyes swell,itchy ear, snoring, and in the morning joint aches (feels like all of my joints are out of their socket). IOne time I kept dreaming that my throat was closing up and I’d wake up panicked. Could this be a wheat allergy? My doctor says it is just Hashimoto and nothing else. The symptoms last about 5 days after the accident. With dairy the symptoms only last one to two days. Also is anyone else ok after eating wheat until they go to sleep? I have read here and elsewhere that the dairy intolerance is temporary. How long is temporary?

  166. Nicola says

    PS I have acid reflux that seems to be getting worse and worse. Can this be relieved by avoiding grains and dairy?

  167. Nicola says

    Yes, I believe I am better when I cut out grains. Interesting that you include rice as an irritant – I had always thought rice a goof thing to eat. Millet upsets me, too. What about quinoa – would this be a good grain for me? Am I better to take brewer’s yeast for the B vitamins? How do I eat enough vit B complex if I’m avoiding grains? And, yes, since I stopped consuming dairy I am so much better.

    Kind regards


  168. says

    Hello Chris and readers,

    Firstly, thank you for writing this article, I already know most of this information but when I suffer badly from allergies I always tend to do research to validate my terrible symptoms. The hardest thing for me to deal with is the psychological symptoms such as anxiety, depression, anger and maybe even slight schizophrenic symptoms.

    I can handle a little bit of gluten/diary but on the weekend I binged on some chips/dip (which only occasionally happens when i’m drunk!) and only after eating the chips did I realise that the flavouring contained gluten/dairy. I’m not sure if anyone can relate but I feel like these flavourings that contain gluten/dairy have a much more profound effect on me than if I eat say a piece of bread or more ‘natural’ wheat products.

    I’d like to describe how i’m feeling and see if anyone here can relate to this.

    I ate the chips on Saturday night and it is now Wednesday. On Sunday I felt OKAY, a little bit of mind-fog and just slightly weak, I felt a little bit hung-over. On Monday it was very hard to wake up and get out of bed, I felt a complete lack of energy/weakness and a sick sort of despair inside my body. I couldn’t concentrate or focus on my work (luckily I work for myself) but as i’ve been through this many times I decided to go to the gym and push through the feelings of weakness. I was able to complete a workout at about 75% strength and this helped me regain some clarity temporarily. This continued for the following days and even now, four days later, it is still very hard to rise in the mornings and I still feel weak and mentally hazy albeit slightly better…the duration of my affectation is crippling, I remember thinking I was bipolar for a period of time because these states of weakness and depression would last so long.

    Further, and perhaps the hardest thing to deal with is that my mind is so compromised when i’m in this state. I am so easily frustrated and angered (I tend to lose control and break things, this time i broke my iPad screen :( ) and I feel a deep hopelessness and depression. Before I realised it was the gluten I was convinced that I suffered from depression and anxiety but when i’m not suffering from allergies everything is fine and my mind is sharp and clear. When i’m like this I observe a dull quality to my expression and my eyes, like no ones home. I am an intelligent guy, run my own business, deal with clients etc and there have been times when i’ve had to cancel meetings and go into ‘hiding’ to get over these spells. Stress is a huge factor in exasperating these symptoms, if i’m not stressed and eat gluten I can get over the symptoms faster.

    At my worst moments of despair and hopelessness I had thought about (not considered) suicide and when I was at my worst, before defining the cause, I would have physical symptoms such as red, itchy eyes, rashes on my face and body and pale skin. Seeing a naturopath, nutritionist, my own research and watching my diet over the years has helped immensely…if you feel the above and haven’t tried eliminating wheat/dairy from your diet I strongly suggest you give it a shot. Better to do that than think you’re going insane or that you’re broken!

    Hope this helps someone :)

  169. Jay says

    I had a gluten intolerance test done, but am now confused about what the results really mean for me. What does it mean when you only have 1 out of 4 categories flagged, namely Deamidated Gliadin IgG??? I’ll post it…

    Test name Result Reference range/Units
    Total IgA 2.05 Adult 0.69-3.82 g/L
    Transglutaminase IgA AB 0.3 <10 U/mL
    Deamindated Gliadin IgA 5.8 <10 U/mL
    Deamindated Gliadin IgG **10** <10 U/mL

    I'm not exactly perfectly wheat free, but I'd say I was on a "wheat reduced" diet leading up to the test… lol Could that have messed with my results? I feel good eating rye bread, have a disaster of a time with buckwheat pancakes or fancy pasta. Any insight is greatly appreciative.


  170. ella says

    I would like to know if gluten sensitivity can cause thinning hair over a long period of time. Not auto immune loss but generalised diffuse hair thinning in women.

    Thanks for reading


  171. DHinKC says

    I have self-diagnosed DH. Biopsies and blood tests were negative for LgA antibodies, but I had been gluten free for at least 1 week when the biopsy was done so I don’t know if the test can be considered valid. Regardless, based off of 10 months of personal experience, I consider myself to have DH and assume I have NCGS. Eliminating gluten over the last 10 months made my rash go away almost completely. Every now and then I find a new ‘threat’ and i have flare-ups, like with my CoverGirl lip gloss (now only use Burt’s Bees) and my little cups of French Vanilla creamer. Another flare-up just the other day is making me think I might not be able to handle corn :(
    My question is this: Even though I don’t have the traditional gastro-intestinal symptoms of CD, could damage still be occurring? Could intestinal damage have occurred over the years of loving gluten? I was a total bagel-holic and ate them daily for years. I don’t want to have to go back to a dr, but I feel like I should know if there is something else that needs to be done other than eliminating gluten and corn. Thoughts?

  172. Missy says

    I see extreme gluten sensitivity (along with intolerance to a whole bunch of other things) as a symptom of something else deeper going on. This needs to be investigated instead of struggling to live your life in a bubble, avoiding even the handshake of someone who just ate a piece of bread or a cookie. Perhaps liver issues, toxicity, etc. Yes, avoiding gluten for a while is mandatory but that alone is not enough. We have to get to the root of things.

  173. Kathleen says

    I’ve been gluten free for a number of years with some cheat times and during those I get some nasty flair-ups. I was tested for Celiac and the test was negative; I’ve tested for wheat allergy and the test is negative however my elimination says otherwise as does when I was tested for the wheat alone at the allergist, my face got hot and prickly, face got tight, I got anxiety,… to me that says positive and yet the test said negative. I’m considering strongly trying the Cyrex Test. During various allergy tests and well as elimination tests, I’m pretty much allergic to all grains and legumes – so all seeds. Occasionally I can tolerate small amounts of certain grains, i.e. oats, quinoa, amaranth, and rice, however a little over on those and I begin to react as well. I found it interesting that my intolerance/allergies seemed to come about shortly after we moved to a grain production region from the city. Within 2 months of the move, everything I at went through me within 20 minutes and the extremity of the symptoms just escalated from there. One of the worst weight gains was 35 lbs. in one week after I went off fluid pills (I was gaining 10 lbs. of fluid per day while on the pills). I haven’t gone completely Paleo (dairy doesn’t affect me) and I do consume some grains periodically however given the inflammation issues and weight issue just won’t leave me, I’m going to have to bite the bullet again and just get rid of them. I think the Cryex test just might be the icing on the cake with respect to evidence.
    One of the biggest issues I have with going off it all however is the fact that it makes it virtually impossible for me to do part of my job – travel. I used to do a lot of travel as a consultant and not eating seeds has put that on hold. Trying to get foods that don’t contain seeds, especially when travelling, is virtually impossible – any suggestions? When you mention to restaurants they have no idea what to make nor how to bill for it when you make suggestions.
    I’m also allergic to most of the nightshade family and onions as well – so add that to the mix.

  174. eric says

    I´ve been eating a non gluten diet no sugars some dairy because I was diagnosed with hashimotos, antibodies Reading of 111.1 at the end of june, which is now falling significficantly and which is now, as of just two days ago under 92. I´m also supporting my inmune system taking selinum, vit d, digestive enzymes l glutamen. Be encouraged readers this diet really does work to help symptoms.

  175. suzanne says

    I did forget to say that I found it necessary not only to eliminate gluten but also soy and corn I consume organic raw grass fed dairy and follow a low carb regime based on paleo type guidlines before I got gluten the results were fantastic. I could stay awake all day was able to have a good nights sleep, could get out of bed without been stiff and sore have lost 20kilos so far but the best result of all was been able to leave the house with out freaking out or having the over whelming feeling of wanting to end it all due to depression and by the way love your recipe for buckwheat pancakes!! Cheers

  176. suzanne says

    Hi just wondering how long does it take to get over gluten exposure I diagnosed myself back in February by process of elimination after years of suffering from anxiety, depression, fatigue, digestive issues, aches and pains, brain fog and extreme weight gain. Started to improve in all areas untill I got gluten 4 weekends in a row, the 4th time was a big one (eating out), its been 3 weeks now and I’m still sick extreme fatigue, aches and pains etc I got so bad I thought it was something else and have been back and forth to doctors test show I have inflammation, low b12, iron and D vit but everything else is ok. I still think its from the gluten the dr calls it chronic fatigue or some type of arthritis I’m a little worried because I haven’t been as sick for as long. has anyone else had this problem?

  177. Anna says

    I started a grain-free and legume-free diet 5 days ago. I don’t think I have a strong reaction to either, but also feel I have an extra 10-15lbs that I can’t loose despite 4-5 days of vigorous exercise a week. I’m also a life-long sufferer of eczema (a skin condition the medical industry doesn’t seem to care too much about).
    Here comes the ‘graphic’ part; since starting the diet I’ve noticed that my stool is very loose. I’ve always had regular, solid (but not hard) stools in the mornings and usually eliminate 1-2 times a day. Sometimes in the mornings my stool is looser and I believe it’s because my coffee consumption (1 cup in am). Cheater notice- I used soy sauce (gluten free) on day 2 forgetting that soy is legume, but if anything my stool has been getting looser over starting the diet.
    I do consume dairy (coffee creamer, milk, cheese) and fruit (mostly berries and apples). My question is about whether this is normal, a transition maybe? Thanks!

  178. Shannon says

    A while back, I had horrible stomach pain including night sweats. I went to the ER and wound up having emergency exploratory surgery. It was discovered that my bowel had perforated and had to be re-sected. I was tested for everything including celiac and cancer, but no cause was ever determined. The doctors had no explanation, no recommendations to ensure this didn’t happen again, and was told to continue eating normally. I healed, but noticed I had consistent gassy stomach sometimes accompanied by constipation. Since my doctors obviously had no clue, I decided to figure this out on my own. As soon as I eliminated grains and dairy, and replaced the calories with high quality fats, I lost weight and my stomach pains disappeared. I’m fairly certain my bowel issues were due to a wheat/gluten and/or dairy intolerance. It’s frustrating that as a layperson, I was able to fix my issues when educated “experts” had no explanation, no suggestions, no recommendations, and no real concern. Thankfully I was able to figure it out, but I think articles like this one are so important to get the message out there! Fat is not the enemy, grains are!

  179. Cele gannon says

    My daughter went off gluten and dairy and her symptoms of head ache, stomach and Indigestion were gone. She 16 and ahe wanted to try to eat dairy so she tried taking Lactaid. She didn’t have any symptoms. Then she just began eating dairy again. Problem is that she has a chronic lip blister problem. Just in one spot where her braces use I rub her lip. He blister is visible and if course bothers and embarrasses her. It was suggested by a nutrition store worker that she go off dairy and all carbs again. We did the blisters got a bit better but not completely. Just this week she began having stomach aches again. Wel she had corn chips at a Mexican restaurants. I approved that, but she was sneelking chips at home that were labeled gluten free. They contain corn. So I guess she can’t do any corn now either. However even when she was completely off dairy and grains. She still had the blisters. And after 2 weeks ahe lost no weight. She only ate veggies, protein nuts and small amounts of fruit. She played tennis 2 1/2 hours 6 days exh week. Still no weight loss. She’s probablay 10 to 15 lbs over weight.

  180. John says

    I suspected I had a gluten intolerance because of chronic gastrointestinal pains, diarrhea etc. I have been on a gluten free regimen for three months and am undergoing an endoscopy in two weeks. I started having gluten again three days ago and was surprised that my gastro stuff did not appear again. I am questioning whether or not I have an intolerance in the first place. However, I could not sleep the first night, have felt varying degrees of stomach discomfort, and when I complained to be lightheaded this morning, my wife asked to do her blood test for diabetes, it showed my sugar level was 285. I have had a colonoscopy, lactose and fructose tests, blood test for celiac, foreign pathogen blood test and a bunch of others and all were negative. I am totally confused. In a sense I wish I had the diarrhea again because then I would be sure it was gltuen.
    Any insights?

  181. Cw says

    I have been suffering from alopecia areata, which is an auto immune disease that causes patchy hairloss for about 3 months now. Since there is minimal research on this and no known cause, i had to do extensive research myself on possibilities for why this was happening to me. for the past year i have also had very strange symptoms after i eat wheat (which include, dizziness and extreme fatigue, irritability, restlessness, faiting spells, etc.). A number of friends with CD and several dietitians have suggested that I go gluten-free. After quite a bit of research I figured out that because all auto immune diseases are harbored in the same gene (alopecia areata & celiacs), my hairless may be a symptom of a gluten allergy! Who knew ? I also learned that a lot of people who a gluten intolerance experience hairloss a lot like mine, and once they cut it out, their hair grew back.

    Needless to say, I cut out gluten a few days ago, and already feel better. No more drowsiness after I eat, and my hairloss seems to have at least slowed down a bit.

    I highly recommend that if you are experiencing alopecia areata, you should try to cut out gluten because this could be n unknown link to your hairloss.

    • Janet says

      My son has alopecia and we are begining a GF challenge. Just curious how long you stayed on the GF diet and did your hair return?

  182. Rien O says


    I am 31, male and for the last 6 moths have been having mild to strong pains in the stomach. I have had an ultrasound, urine tests, blood tests, colonoscopy and endoscopy and so far nothing. When it first started it was just a mild pain in the stomach and then a few weeks later climaxed at work (remote minesite) where it was a 8-9/10 pain and I felt severely foggy and was close to vomiting. It had eased by the time I got to the doctors 2 days later (I had also taken some ulcer medicine off someone at work to see if that would help). The Docs put me on nexium suspecting an ulcer however after a month on this the mild pain was still there so they took me off and we did more tests.

    At this stage they have no idea so I am trying to go gluten free to see if this helps. However my wife cooked a gluten free lasagne but forgot and used whitesauce she made with flour. I had this for Tea lastnight and for lunch today. Also I swapped cereals to a gluten free oat cluster mix 2 days ago (from and rice based gluten free cereal). I feel like crap today and wonder if the affects can come on so quickly?

    My question is how long does it take for people to feel the affect of gluten or other grains once eaten?

    I have also had a cold for 2 days which is making me feel worse!


  183. Trudy H says

    The day of my father’s funeral, I began having extreme heartburn from drinking water and a feeling of my esophagus being pulled apart. While waiting to see my doctor (2+ months), I visited a naturopath who asked me to try an elimination diet. Something I was eating was causing my allergies to flare but I never had trouble digesting foods. I did the 30 days of grains free and now I can’t touch anything made with wheat! As per the doctors instructions, I tried pita bread and thought I was dying. My abdomen/intestines were cramping and caused a full day of stress. I was dizzy and had brain fog. It was awful! I then tried a piece of whole wheat bread and it felt like I was having a heart attack. No more grain for me!!

    But I still can’t understand why my intestines are suddenly messed up from grain. It’s been 42 years of no problem and now this?? Frustrated to say the least. It’s not the end of the world to never eat grain again but I’m curious to see if I can eat gluten free products.

  184. Ashley C. says

    18 months ago on a whim, (and without much information) I joined my husband for a 60-day Paleo challenge. Within 3 days of starting, I began to feel different. For one, I was falling asleep before having to take a sleeping pill. I started to do a little research and discovered that I’ve been suffering from some classic CD symptoms/conditions for YEARS: Hashimoto’s, geographic tongue, insomnia/anxiety, migraines, lactose intolerant, irregular cycles…the list goes on! I scheduled an appointment with a gastroenterologist who recommended a gluten challenge and endoscopy. I would like a clear diagnosis so I know whether my 3 kids should be tested. Within a few days of starting the gluten challenge,a number of symptoms returned and I decided to postpone the testing and resume a gluten-free diet. My husband is Italian and we were planning a summer trip to Italy, so I figured that would be a waaaay more “fun” way to do my gluten challenge. I am now home from Italy and 5 weeks into my gluten challenge…My endoscopy is on Monday. I have been feeling really bad and caught a cold (my first illness since removing gluten from my diet!!) that has lasted weeks. My immune system is definitely struggling! I’m realizing how badly I have felt for years but just managed symptoms and not the causes(s). But, I’ve invested 5 weeks and I’m in the home-stretch now. I am looking forward to resuming eating Paleo as soon as my procedure is done. If I get a positive CD result, what is your recommendation for screening my kids? Would a positive genetic blood test be enough to assume they should also be gluten free?

  185. Isabelle says

    I suspect a gluten intollerance in my 16 month old baby but do not know how to go about trying to confirm my suspicion. Every since he began solids at 4-6 months he would eat very little cereal and have very bad cramping and constipation if he did. I mentioned this to the DR and he said to simply ski cereals and continue with fruits and veggies. Fast forward to 16 mts and he is not a bread eater (FYI we eat whole wheat bread) and when he seems to eat it, he has severe cramping and constipation which keeps him up. He does it pasta often and I’ve only experience the cramping on some occasions. Can this be a Gluten intollerance or is simply more of a digestive issue?

  186. Alejandra says

    I was diagnosed NCGS a year ago, since then I´m on s strict diet, I don´t eat diary either, what do you think of a reintroductin gluten test to know if gluten is really bad for me?? Could that be such a big problem??

  187. Bridget says

    I know I have problems with gluten, and have been gluten free for some time. I think there may be cross-reactive foods in my diet, and I’m wanting to take the Cyrex test for that. Just today I found out that I’ll need to re-introduce gluten into my diet in order to take the test, which frankly scares me. I can’t eliminate all the cross reactive foods ‘just in case’ so I’d like to take the test. On the other hand, wheat is addictive for me, and once I eat some I can’t stop until I’m so depressed, weepy and sleepy I can’t stand it anymore (usually about two weeks). Thoughts? Anyone else been in my shoes? Is re-introducing gluten temporarily worth the test results?

  188. Linette says

    I am allergic to gluten, soy, lettuce and chicken. I have cut out everything and workout 3 days a week and I can not seem to lose any weight. Before my body started shutting down from gluten I was 20lbs lighter and now it has been a struggle. I eat fruit, greens and meat once 1 week if any. Does anyone have any suggestions?

  189. Beth says

    I decided to try a no wheat, gluten free diet to see if it helped my digestion issues. After 6 weeks as of yesterday I ate one bite of biscotti. I immediately had major skin flushing of bright red skin all over my face, neck, chest, and arms. Followed by a severe headache, vomiting, and diareah. This reaction was so severe not sure if I had an allergic reaction to something else I ate for lunch at the restuarant or if that small of a bit could cause such a reaction….. Is it possible to react that violently?

      • Beth says

        I’m not sure if there were any nuts in the biscotti, But I eat all types of nuts all the time. There wasn’t anything unusal about what I ate for lunch either, if this reaction isn’t possible from gluten then I should probably call the restuarant to see exactly what was in the dish in order to prevent having this experience again.

        • Lauren Perreault says

          Biscotti almost always have almonds in my experience. Be very careful with almonds from now on I would think.

    • Nilo says

      Hi Beth,

      My daughter has been gluten free for gluten intolerance or sensitivity and ate some gluten at a school potluck after a period of strict no gluten. It also happened to be a baked sweet, ie. sugar and gluten (her old favorite combo upon which she based her whole diet in the past). She had a nearly immediate reaction with brain fog, and malaise. Quote at the time “I feel so sick. Confused and tired and out of it” It was quick and dramatic and lasted a few hours. I looked this up and found others on other sites who have experienced similar reactions. I know that she does not have Celiac. I really suspect that there is something about the sugar/flour combo that makes it worse, but I could be just making that part up. Mostly I want to give credence to what may very well have been a reaction to the gluten. Think about it this way; some people who are allergic to penicillins will be given small doses repeatedly until they are temporarily desensitized. This works only while they are continuously exposed to pcn. Should they stop the desensitization and they become reexposed to pcn, they would have a fulminant reaction. I am not claiming that this is the process by which you or my daughter experienced the reaction, just suggesting that it is possible. This stuff is complex and not yet well understood or documented. While it is possible that it was coincidental, or unrelated, I leave open the possibility that this was a true reaction to gluten.

    • Nilo says

      Duh, I should have said that she also had the facial flushing with hot ears and all that jazz. A week after the first reaction, I got to see it myself after she decided that Xmas was a good enough excuse to have a piece of cinnamon roll. She immediately felt sick and flushed on her face nearly purple all the way up to and around her eyes. On that occasion, however, there was a confounding factor. She had eaten the cinnamon roll with some homemade Kombucha. That second reaction, which I was present to witness, could have been due to the slight etoh or fermentation of the Kombucha vs. the gluten. Confusing, I know!

  190. Lisa says

    I love your articles. but I have been wondering why quinoa is not good, or why is not accepted as paleo?

    Thank you

  191. Sue says

    Thank you!
    I’ve never been diagnosed as Gluten intolerant or Coeliac (British by the way), as I’d worked out I had a problem and cut out gluten before seeing a medic. The idea of having to consume gluten for 6 weeks before having a blood test fills me with horror! I have cut out all gluten from my diet. Not too difficult as living GF is substantially preferable to the alternative. My problem is a seeming sensitivity to GF products: all replacement breads and crackers produce similar problems (cramps, nausea, diarrhoea). I cannot even drink alcohol if it has been exposed to wheat – including wine, they use wheat to ‘finish’ it – nor drink the GF beer. Most information available on the UK coeliac forums insist there is not a problem with alcohol or GF foods, and that ALL coeliacs can tolerate up to 20ppm of gluten without issue.
    I read with interest your comments regarding oats, rice and milk. I cannot eat the treated oats. and have been suspicious about rice for a while (but again have been assured there is no problem). Milk has been an issue too, but haven’t eliminated it from my diet entirely. I will now!
    This has been the most illuminating few minutes of my life since coeliac crept up on me a few years ago. I have auto immune RA which was diagnosed when I was 23 which requires treatment with Bio-agents. I hope removing these few other things from my diet (rice, milk, corn) may improve both the gluten problem and the RA. Thanks for such useful, accessible, well written information. Now, could you write to Coeliac UK and tell them???? They need help.

  192. rachel says

    I am lactose intolerant (have been for years) and have been doing a wheat free low gluten diet for a few weeks and feel great! I still have condiments so can’t declare to be gluten free. I used to wake up sluggish but can now jump out of bed before my alarm. Weird though since changing my diet I remember my dreams every night!

  193. Christine says

    I need som advice and help!
    I initially went vegan, and my diet was very heavy in what I know now, high fructose and gluten . My body basically over loaded and I had a severe reaction. This is about 4 years of complaints, mood swings and stomach issues I told my doctor. I went to a GI, who took me off gluten, agave, honey and a multitude of other foods- within 3 days I was 100% better. I have now had blood test and negative for celiac but when I do eat gluten on purpose these are my symptoms : ‘hangover’ , severe abdominal pain (visited ER 3x) , headaches , constipation, D, gurgling stomach, loss of concentration , fogginess. I am at a loss. I know that I’m effected by gluten but the GI doctor seems to be Blaise about my symptoms. This is 4 months of servere issues , I’ve had it and feel so alone . Does anyone who’s been through this have any suggestions ?

    • mcoffeesnob says

      I had similar happen but I’m a bit confused. What are you asking? You are gluten intolerant; those are the symptoms. Avoid gluten.

      Again…i’m not quite sure what you are asking. Would be happy to help…if I can.

    • Heather says

      I agree. This is easy. You don’t need a doctor or anyone else to tell you this. How are you at a loss? My suggestion is the same. Don’t eat gluten. Don’t eat grains.

      You did the elimination diet. You removed them, got better, re-introduced them, got worse. So…remove them, get better. DON’T REINTRODUCE THEM.

  194. Adriana says

    I desperately need advise from you Chris, as I’m atmy wits end. I have been suffering from anxiety and depression for the past 16 years. I’m 38 now. I was anxious as a child also. Suffered from poserior uveitis since I was 14, have been battling with acne and cystic acne for the past 13 years and bad knee pain. The past few years I’ve been suffering from constipation and adbominal pain and discomfort. This dull pain throughout my stomach radiates down to my rectum, and it makes me even more depressed. By the way SSRis have done nothing for my depression. I started taking niacin 3000 mg three months ago and have been feeling slightly better, but my stomach pain which I get at least once a week is driving me insane. Do you think I could be gluten intolerant? I tried going gluten free last year, but I live in a small place in southeast Europe where you cant find many vegetables except peppers, tomatoes, potatoes and cabbage. This past month I’ve been having severe cases of anger and rage, I have no patience even for my children. And I forgot to mention that the last 3 years I get this numbness/tingling in my entire body, from my neck downwards, which lasts for 2 months and dissapears gradually. Your opinion would be greatly appreciated.

    • Eric says

      I´m not an expert at all, I just want to help you feel better, I´ve been trawling all over the internet looking for answers to my own problem and from what I´ve understood and If I was you I´d seriously consider going gluten free for at least a month and see. Good luck.

  195. Galina says

    After terrible brain fog for three years and going to the doctors making different testes on me and finding nothing, I started to eliminate some food from my diet. First I eliminate dairy and started to feel better, but still had brain fog and being tired all the time, I was 40 years old, then I removed bread and it was good feeling, almost no brain fog, just sometimes, then I started to read different articles and realized that I have gluten problem. I eliminate all the foods containing gluten, it took some time, because it hidden in sauces, started to read labels. Now it is about 8 month totally gluten free and fell good, my head is clear and I have a lot of energy. No gluten ever again!

  196. MsEvoRocks says

    Thank you very much for this great article and all the wonderful comments from readers. I am motivated to start a gluten free diet, if this indeed is the cause of all my issues. I have to get my husband on board as well. He’s been the one who pointed out that he has reactions every time he drinks milk. But, he only drinks milk with baked goods (cookies, pie, cakes), maybe it is actually the gluten that causes his GI issues. He has mentioned blood in his stool several times in the past years.
    I hope we can get to the bottom of our issues, because I cannot be so sluggish anymore. I read food label and try not to eat processed foods, we cook at home most days of the week, pack lunches when we leave the house. On rare occasions we eat out in restaurants, and we can feel it later. I also noticed that my Chinese coworker is always cold, she does not eat bread, or any other grain, but rice. Maybe the grains helped us humans keep warm, that’s why we changed our diets to begin with. I also read that the original Einkorn (German, one seed) is not used anymore, and we are actually eating GM grains. I am tempted to try this other type of wheat, to see if we could eat it instead. Does anyone have any information or personal experiences to share about Einkorn?
    Thank you so much for all your help!


    • says


      Einkorn still has gluten in it, just like other ancient forms of wheat. All grain today has been hybridized, but is not necessarily GMO. GMO is a new thing, but people have been breeding plants and animals via hybridization for thousands of years.

      If you are so susceptible to the negatives of grains/gluten just from occasionally eating out, then it’s unlikely that you will find einkorn to be safe for you guys.

      There’s nothing magical about grains from a nutrition standpoint, and since einkorn is very far removed from modern day wheat, you’d be just as likely to find ‘paleo bread’ and gluten free flours to be as tasty as bread made from einkorn.


  197. Herman Freysen says

    Glad I read this article.
    I am a type 1 diabetic and have suffered from asthma during childhood and later psoriasis. About a year ago I changed from a high protein diet to Paleo in an attempt to improve my health. I don’t think I have Celiac disease, but I just don’t feel optimal when consuming gluten. I had a light bulb moment when I realized all my worst ailments were all immune related (T1 diabetes, asthma, psoriasis) and I have seen specialists on each of these diseases/conditions and all of them failed to notice the connection!

    I believe all the asthma pumps, insulin injections, ointments and creams could have been avoided if I have been brought up on a gluten free diet.
    However I am still having trouble getting rid of the diary and find it a bit worrying that casein could cause a cross reaction. Oh well, guess this means removing dairy could make me feel “much better” than just “better” 😀

  198. Anna says

    Great article!
    I suffered from IBS for many years. I have tested positive to a blood test for Gluten allergy in the past but negative to Celiacs disease (colonoscopy). When my son was born we got thrush which affected breast feeding for a short while. He has suffered from diarrhea a lot as a baby and young child and even got Giardia for several months when he was three. Some people tell me he displays autistic tendencies at times, yet we do not believe he is indeed Autistic. He is also set off by colourings and MSG in food. From Dr Google I believe he is affected by gluten, maybe causing inflammation of Candida albicans in the gut. However I have not been able to get any support from medical practitioners, family or friends on these points.

  199. Jennifer says

    I forgot to mention that I was suffering from quite a bit of anxiety prior to adopting the paleo diet. The anxiety has subsided and no longer seems to be a problem.

  200. Jennifer says

    Great article. Last year I gained a lot of weight. About 40 pounds to be exact. I was under a lot of stress, but my caloric intake could not have justified such a weight gain, assuming one believes in the calories in/calories out model of weight loss. I was under a lot of stress, so I am assuming that my cortisol levels may have been high. My job was demanding and performed in a sedentary manner. I did not get hardly any exercise. At any rate I went paleo at the beginning of February and my weight is finally coming off. I still consume some dairy in the form of plain greek yogurt. A few days ago I cheated and when I tried to eat a roast beef sandwich, I thought that I was going to be sick. I have had no other symptoms of gluten intolerance that I am aware of. I have only had unexplained weight gain. I have had some issues with muscle twitching which has remained undiagnosed. Fifteen months ago my blood tests revealed FBG levels of 5.1 mmol/l, elevated urate levels, lower than normal HDL, but near ideal LDL and triglycerides. Does this sound like I could be sensitive to gluten or should I be looking elsewhere to explain my weight gain? I don’t want it to happen again.

    • Sims says

      I am sensitive to gluten, and everything else at the moment. The significant thing I have noticed is the huge decline in migraines and headaches from taking out gluten. I now think my headaches and migraines are food related…after all these years I thought it was back issues.

      I like you have put on weight and I am on a pretty strict diet FODMAP, and I can’t believe it but in 3.5 months i have only managed to lose 2 kg and it fluctuated back up all the time.

      The FODMAP diet hasn’t helped with all areas, although overall I would say it has sort of helped. Although a lot of the foods on the low fodmap chart, are effecting me, so dietitian is not really sure if that’s the answer. I am going on a stricter elimination diet now as she think it’s more chemical based.

      If I don’t lose any weight on this new elimination diet, then I know something is really up, because one would have to lose weight on the diet I am on. No sugar and handful of vegetables, certain meats, no dairy, only bananas and apples, some legumes.

      I am pretty sure though what has made things worse though probiotics, terrible brain fog, nausea, dizziness, achy bones and flu like symptoms. I have been off them for about 5 days and feel a lot better. I can actually think straight!! Or else it it was tasty cheese, but really I am pretty sure it is the probiotics, as I have had averse reactions to it in the past, mainly severe stomach pains and diarrhea. I didn’t make the connection this time around, because I didn’t reaslise probiotics could cause such severe results with some people.

  201. Lara says

    I have tested negative for Celiac (though after being gluten-free for months, so it could be false negative), but found my GI symptoms, mild depression, and “brain fog” cleared up when I went gluten-free. Normally if I “cheat” and eat gluten I get GI distress. However, I am an ultrarunner, and I’ve found that during/immediately after a race of 5-6 hours or more I can eat gluten without ill effect. I’m wondering if there’s a biological reason for this (something related to glycogen depletion?) or if it is somewhat psychological?

    • Christina says

      I wonder if the physical exertion lowers the autoimmune response. Kinda like your body is too tired to attack the gluten.

  202. says

    Hi Chris, listened to your interview on heart disease on Dr Mercola and found the item on coeliac disease via that. I am 51 and was diagnosed as a coeliac at birth. I am a total expert. It was difficult avoiding gluten. In Ireland, if you visit somebody’s home the first thing they do is shove 10 samdwiches and a pot of tea down your troat, so i became a bit unsociable. In addition to avoiding gluten, the thing that works for me is exercise and the more intense the better. I have no doubt but for exercise I would now be dead! It boosts everything in my life, pretty much immediately, literally everything from my strength to my mood. My doctor told me many years ago that i should be thankful that I was on the healthiest diet in the world if i stuck to it. I do that pretty much apart from a few beers. Strangly enough, I was told it was ok to drinnk cider but when i do i immediately get itchy and blotchy. Overall after living with this condition, my advice really, is cut the gluten and processed foods and ecercise daily. I am also pretty sure that there many people out there who would benifet greatly from a gluten free diet but don’t know it!

  203. Mindy says

    Living Paleo has changed my life. I was able to quit taking my 20 years of precription acid reducers and no longer suffer with digestion issues and stomach pains. I also have almost completely eliminated my lifelong struggle with anxiety!!! I feel like Im truly living and enjoying life for the first time in my 34 years!

  204. Mikayla says

    I thought I was gluten intolerant, given that I have cystic fibrosis, and went gluten free three years ago but it did not significantly change my symptoms. Three weeks ago I went complex-carbohydrate free via the Specific Carbohydrate Diet and I noticed HUGE differences. What is explained in the book “Breaking the Vicious Cycle” is that gluten is not the primary cause of gluten allergy, celiac, or gluten intolerance, it is the secondary cause. The real problem is that people with compromised digestion (like me) cannot digest carbohydrates down to monosaccharides, so they feed bacterial overgrowth in the colon leading to autoimmune disorders (CD). The problem with glutenated grains is that the complex carbs are bound to the gluten protein, which makes them even harder to digest than other complex carbs.

    So my question is – you’ve mentioned the SCD in a few of your other posts but I have not seen you mention this problem with the gluten-carbohydrate malabsorption issue, so I wanted to check with you to make sure you know about it and I wonder if you find it valid. Please let me know. It seems to make a lot of sense, given the statistics in the second-to-last paragraph.

  205. Valda Redfern says

    When I eliminated wheat products from my diet, the most obvious effect was that my hay fever disappeared, after nineteen years of having to take antihistamines for several weeks every summer in order to get through the days.

    Other symptoms that I’d gotten used to – chronic nasal and sinus congestion, asthmatic coughs following winter colds, acid reflux, mild bowel problems, blood sugar lows between meals – also faded away. That was about four years ago.

    Since then I have occasionally consumed wheat products and the result now is a classic toxic reaction: a waterfall at the other end about twelve hours later.

    I seem also to be somewhat intolerant of corn, and I avoid all grains except rice, which does not seem to harm me. I don’t miss them at all.

    I tried cutting out all dairy and noticed no difference. For the last three weeks, as another experiment, I have been drinking large quantities of raw milk, and everything seems fine.

  206. david says

    Surely some of the people who improve on a gluten free diet is due to FODMAP’s? Particularly those with GI symptoms.

  207. Tom says

    I do my best now not to consume any wheat products. I have ulcerative colitis and if I have a sandwich worth of bread then I will bleed profusely the following day such that my stool can no longer be seen in the toilet because the water is so red and this is after being in complete remission beforehand. In addition to the blood I have much more gas, and I become irritable, sad and tired for several days.

    Strangely, consuming a large portion of pork produces the same results.

  208. Nicole says

    I am pretty confident I have a gluten issue, although have tested negative for CD in the past when my Dr has tried to investigate my digestive issues – he told me to eat more ‘healthy whole grains’ to get my gut moving again!! Two months gluten free is all I needed to confirm an intolerance after that, as after eating some bread again I felt hungover for days! Now I feel great on an organic/grass fed Primal diet with lots of probiotics, fermented foods and occasional serving of raw milk.

    I did have my gallbladder removed about 10 years ago though after months of attacks/severe pain, which I’m lead to believe can signal undiagnosed CD. What are your thoughts on this? In a way I’d love to have the firm diagnosis, but then again the results above speak for themselves!

  209. matt says

    You say: “corn, oats and rice, contain proteins that are similar enough in structure to gluten to elicit an immune response in people with CD or NCGS” but that NCGS is: “a reaction to gluten that is NOT autoimmune”

    If gluten grains do not cause an immune response in people with NCGS why do non-gluten grains?

    • Mellie says

      My understanding is that it is all different types of immune reactions. An autoimmune reaction is when the gluten makes your body start to attack its own self, a histamine reaction in a straight up wheat allergy is like immediate itching and swelling, and with an intolerance your body thinks the gluten is a foreign invader and starts attacking it, but it is different than autoimmune where it attacks its own cells.

  210. Raphi says

    You mention that some people present with ‘silent’ symptoms. When I try to imagine how these would appear I think of people with no obvious GI distress but who tend to be stressed, have thinning hair, poor sleep etc.. Symptoms which can easily be construed as part of a hectic life or simply ageing. Can you please provide a few examples of these non-obvious symptoms?

  211. Brian says

    enjoyed this article..I feel alot better eliminating breads pasta’s etc.. I have oats still, but other then that and an ocasional bit of hamburger bun..I usaully just eat it without the bun.. no gluten or grains.. its quite nice the feeling when i first changed over.. don’t miss grains

    • Ginny says

      Hi Brian,

      I am noticing that I feel bloated when I eat grains and am confused since receiving a diverticulitis diagnosis. What do you eat in place of grains in order to stay nourished?

      Healthy wishes,


  212. LeeAnne says

    I’m not sure if I am gluten intolerant but I know I’m sensitive. I removed gluten and felt wonderful but didn’t really notice how well I felt until I dabbled in some bread products again. I immediately experience bloating for about a day or so after eating gluten products. I didn’t know I had a flat belly until I quit eating gluten. Imagine that?!? Now I avoid it as much as possible and pay for it when I don’t. I imagine that a lot of people are like this, meaning they are sensitive to it and would experience a positive result without it, but they don’t feel bad enough to try it. Our media machine constantly tells us how wonderful whole grains are and the general population believes everything they hear on the nightly news.

    • Ginny says

      Hi! I am new to this and working my way through an overwhelming puzzle right now! I am 36 years old and approximately a year ago received a diverticulitis diagnosis which was verified with two CT scans. I believe it is an immune response now, although I could admittedly use more fiber. The genetic pool seems to be at play too. My mother has CVID which took 10 years to be diagnosed and by then the damage was seriously done – we’ve almost lost her multiple times. My aunts have similar DNA but are more “sensitive” than my mother’s life-threatening state. They are all off gluten and dairy.

      So it begins…I am going to the doctor tomorrow for a follow-up consult from a recent ER visit, then followed by another flare-up that I believe I got past without antibiotics even though I am experiencing inflammation. My questions begin with asking what it is you eat instead of grains if necessary? Is it crucial to come off gluten? I am concerned about ending the inflammation immediately before more damage is done. I do not want to end up like my mother and this is how her saga began so I need to be careful even though I am not borrowing my mother’s troubles. So how do I heal my gut?

  213. says

    My Hashimoto’s antibodies disappeared entirely after around a year on Paleo. My doctor said it was probably due to stopping wheat. I had NO (none) NADA (zip) symptoms of gluten intolerance in the whole rest of my life prior to going Paleo. In fact, I ground wheat and made 100% whole wheat bread with the fresh flour.

    It was joint pain and lethargy that tipped me into Paleo. Getting rid of Hashimoto’s was a pleasant surprise!

    • Meredith says

      That’s wonderful!! Could you recommend any books etc. that helped you along the way? I have Hashimoto’s myself. The thyroid replacement therapy my Dr. has me on only makes me feel a little less of a zombie. I’m going to try a gluten/dairy free diet and see if it helps and hearing your story was encouraging :) Thanks.

      • Alyssia says

        I recently read the book “Why do I still have symptoms? When my thyroid tests are normal.” by Dr. Datis Kharrazian. Lots of information about Hashimoto’s.

    • El says

      Me too. Hashi’s antibodies went from the 600s to just barely above the normal range on giving up gluten. And I’d never been aware of any digestive symptoms prior to this either (although, oddly, if I accidentally consume gluten now I DO get symptoms, as in a mild case of ‘constorroea’).

      • says

        It tickles me to see others getting the no-gluten message re: Hashi’s. Yay!!!!

        I wrote a post (referencing Chris’ site) on my blog about the Hashi’s disappearance … “Hashimoto’s – Resolved.” The longer I was off grains, the less thyroid medication I needed. I hate the fact that wheat is no longer a food for me, but I love feeling great. Meredith, I tried reading this or that thyroid book but the best information I got was in Chris’ articles and similar readings on paleo blogs. I wouldn’t touch a thyroid book now unless I flipped to the index and saw GLUTEN was addressed. I’m into my third year of paleo now. For me, here is what works : No grains or legumes, except a little rice now and then. No vegetable seed oils. No sugar or very sweet fruits. Very limited dairy. Lots of coconut products, especially oil. Moderate protein, high fat, low carb. I keep a keen eye on The Perfect Health Diet and what the Jaminets are up to. They have a lot of good thyroid info, especially regarding the dangers of going too low on carbs.

  214. Colleen says

    Great article. Love the details about how wheat can cause problems for non-celiacs. However, I question whether someone who does a 30 day challenge is safe to eat wheat long term. A person may suffer from problems that do not resolve in 30 or 60 days, or the exposure may lead to future problems. It’s true you advise to keep wheat to a minimum, but many (non-paleo) who read that will see no problem with continuing to eat something that may ultimately cause them great harm. Plus, will they do another challenge in the future if they develop health problems? Keep up the good work — I developed my view point by following you and others over the past year or so.

  215. Kim says

    I’m confused about my Celiac testing results. I told my doctor I was feeling better when I was eating Paleo, but I don’t feel gluten gave me horrible symptoms–just sluggish and mild GI issues. He couldn’t explain my terribly low iron, b12 and vitamin D, so he tested me for Celiac’s.

    My gliadin antibody came back as high at 40 units (anything <20 is negative), and tissue transglutaminase antibody at 7 (anything below 4 is negative), Immunoglobulin normal. He said to avoid gluten. Should I consider myself as having Celiac's and not indulge in the occasional gluten treat? I'm back to eating paleo and if I have an occasional cheat, I just make sure it's gluten free.

  216. bina says

    for a while I thought gluten the problem, but since i can eat moderate amounts of pasta, or very good quality bread without feeling too bad (constpation being main complaint), I came to conclusion actually its the yeast in bread that is the culprit. Yet I seem to be ok with beer and marmite, both surely very yeasty, so am I on the right track? Is it the combination of yeast/gluten in modern fast rise baking that is adding up to constpation? altogether much improved since started taking kefir, any other suggestions gratefully received!

    • says

      Yes, I somehow do agree Bina.. That when you throw yeast into the mix it does exacerbate the problem even further ..I would even go as far to say about 3-5 fold in my case. How it works I just don’t know as I am not a scientist but the bottom line is the body never lies!

  217. Cristina says

    I have Hashimoto and I have been gluten free for almost three weeks. I feel fantastic. My thyroids are no longer hot and for the first time in two years, they do not hurt. I have more energy, moods have stabilized and my sleep patterns are better than ever.

  218. JessicaK says

    I have a daughter who suffers from Sensory Processing Disorder (SPD) and it is interesting that she also suffers from food allergies (like me). She is not just intolerant but allergic. For me, it was an easy decision to eliminate certain food since her reaction was obvious, sudden and caused a lot of misery (vomiting). In doing these eliminations, we saw improvement in her lesser symptoms (rash, runny nose) and in her SPD. I see a lot of families in the autism community struggle with such restrictions. It saddens me that our society has such preconceived notions about health that most are skeptical about diet changes. My daughter’s food allergies? Dairy and Wheat.

    • Heather says

      The very first user comment I ever saw regarding Primal/Paleo and autism was from a mother with a 6-year old son who “came out of autism 3 weeks into a grain-free diet”. (My nephew has Asperger’s Syndrome). I don’t think she meant that he was completely healed – not sure that is even an option. From what I have read (not a lot) not all response and some respond better than others. But this should tell the “experts” something, right?

      • jody says

        I’m a 43 yr old female with Aspergers. My 15 yr old Son has Aspergers too. Within a few days of going Dairy and Gluten free the years of digestive problems ended. The opiate effect they had on me was astonishing. Now I get no headaches, acne, chronic fatigue, my mental clarity is at an all time high and my periods have gone from verging on haemorraging to normal again.
        I don’t care what the so called experts say, Dairy and Gluten exacerbate ASD. I’ve proved it.

  219. Sarah says

    I’m 26 years old, and cut out gluten and dairy at the same time back right before I turned 19. I lost 55lbs within 4 months, and at the time there really wasnt any ‘gluten free’ alternatives, so bread, etc was not replaced. I suppose I put myself on a paloe-ish lifestyle before I could even give it a name to associate it with anything. (I wont call it diet, as I’ve been eating this way since, and over the years modified it to include tons of healthy fats, etc with educating myself more on whole foods).

    I’ve also had PCOS since age 12, and this gluten and diary free way changed my symptoms completely. I find however, my biggest reason for avoiding specifically all gluten containing foods, besides the PCOS symptoms/weight gain, is having to deal with the almost addiction like quality these processed ‘foods’ deliver. They are not satisfying and give me no satiation. My brain was constantly tricked, and I would eat more and more, gain weight and with those empty calories I was probably malnourished despite my weight. I used to feel powerless over food. I feel since eating whole foods, real foods, my brain recognizes them and I no longer have cravings for things that are not whole/real foods. I hope more and more people will educate themselves on the power of real foods, and find real health, not just weight loss. Its opened a whole new perspective!

    • Kim says

      Thanks for posting your story. Gives me encouragement that eventually I can resist the addictive properties of all those garbage foods!

    • Abii says

      Hi Sarah,
      Your story just resonated with me. I’m 21 and currently doing an elimination diet. Within the first week I’d lost 5 pounds, and my weight continues to decrease steadily (I’m about 20lb above “healthy” and 30 above “ideal”) except when I reintroduce something I’m sensitive to. I also have been diagnosed with PCOS for about 5 years. The first thing I noticed was that whatever I cut out was definitely harming my body – for the past 2 months I’ve had regular periods (TMI?!). I’m thrilled.

      Addiction, especially to wheat-containing foods, is something that I also struggled with. Even now I catch myself looking longingly at cookies in the supermarket!

      You can call it diet; diet just means “what you eat”. So your diet is healthy. It really annoys me when people just cut out all nutrients from their diet for the sake of losing weight.. it’s not sustainable and who knows how much harm they could be doing to their bodies!

      I’m really pleased to hear that you no longer crave processed foods. I find myself really fancying sweet potato all the time! Keep up your good work and thanks for sharing such an encouraging part of yourself.

    • says

      I also have Hashimto’s, low thyroid, low vitamin D and contact dermatitis. After reading all of the replies I have to contact my Dr and be tested. I currently have the itchy skin problems, headaches and foggy brain feeling but do not have the stomach problems that a lot of people seem to have but I have my whole life struggled to loose weight. I can watch every calorie and exercise and never loose a pound. My question is where do I start?

      • Leah says

        You should get tested for Candida. Your symptoms sounds very similar to mine. Once I got rid of the Candida these symptoms went away.

  220. says

    I’ve come to the conclusion that the dairy “intolerance” is collateral damage from wheat intolerance. Not sure what the mechanism is, but I’ve seen people I know (starting with my daughter) have their dairy intolerance resolve after going gluten-free. “Lactose intolerance” is very highly correlated with wheat consumption and celiac, and doesn’t seem to exist at all in populations that eat only small or no amounts of wheat.

    So it may be worth re-introducing dairy after wheat intolerance symptoms abate.

    • Chris Kresser says

      I’ve seen this too, and it’s one of the reasons that I recommend people reintroduce dairy after the 30-day challenge (if they want).

  221. says

    Thanks for this great article, Chris. I am lactose intolerant and have tried to avoid dairy as far as possible. I never thought I was gluten intolerant, but having read your article and understanding that there can be different shades, I am very keen to go on a 30 day gluten/dairy challenge. I have quite a sensitive respiratory system, having been asthmatic, and also frequently waking up with a lot of mucus/ runny nose that can persist throughout the day sometimes. My skin is also relatively sensitive and can get itchy bumps out of nowhere sometimes. Let’s see whether a gluten free diet can change this. I foresee that it could be hard to avoid gluten totally though, as they end up as hidden ingredients for many types of food.

  222. moffeesnob says

    While I definitely agree with your article, I have mixed theories about GI. After doing a lot of reading, I wonder if, in some cases, we get intestinal distress and since gluten (in all its parts) is harder to digest, if perhaps we become intolerant for that reason? Many people with intestinal issues are intolerant to multiple foods-so perhaps gluten is just one of the ‘usual suspects’. *like FODMAPS -for those in the correct circles.

    Also, many people with Celiacs have lactose intolerance-but more than a few of my friends have been GF (Gluten Free) and actually were no longer intolerant to lactose once things healed up in there. :)

    I don’t tolerate grains or carbs well at all. A good elimination diet can save LOADS of time, stress, AND money. Great recommendation!

  223. Laurie says

    In 2010, I started eating low carb for weight loss. At that time, I sort of offhandedly noticed that I no longer had diarrhea. I know it sounds crazy, but I’d gotten accustomed over a period of a year or two, to urgent diarrhea several times every morning. It wasn’t painful (no cramping or sharp pains), and I just put up with it. I’d never But when I went low carb, I had to face the fact that I had been dealing with very abnormal bowel movements for quite a while, and something about eating low carb caused it to normalize. I suspected that it had to do with my much reduced grain (and therefore gluten) consumption.

    I gradually quit eating low carb, and gradually, the diarrhea (and heartburn, and weight) returned.

    Finally, a few months ago, I dropped grains (except for rice), and sugar again (I’m not eating low carb, since I’m still eating other starchy foods, and fruit). Again, the bowel movements returned to normal.

    Also, I have low thryroid, low vitamin D, low iron, and a son who is Type 1 diabetic (and is also homozygous for the DQ2 allele). All of this points to the fact that I really shouldn’t be eating gluten, I think.

  224. Jon says

    My wife was diagnosed with celiac disease in 2007. She is 5’7 and was down to 95lbs. She was slowly dying of malnutrition. Her GI doctor said he’d never seen numbers so off the charts as he saw with her. We’ve been essentially a GF household since. Neither me nor our oldest daughter have any ill effects from gluten, but my youngest does suffer from occasional digestive discomfort. She continues to test negative for CD, but we’re always aware of the possibilities that either of them can become gluten intollerant any any given time. My wife, thanks to the advances of gluten free fad dieting, has been able to find more and more things she can eat, which is great. We don’t have to avoid restaurants as much as we used to, however there is always a chance of cross-contamination, which also makes her sick for 3 days.

    As a mandatory GF household, it is infuriating when we see or hear people who do the GF fad diet. Believe me, my wife would love to be able to eat anything, anywhere, at any time. There are so many people who claim to be intollerant to gluten but have never been tested for the disease. I think those people should attempt to live a day in the life of someone who truely suffers (cramps, headaches, irritability, fatigue, loose stool, etc) when they get gluten in their systems and see how easy they have it. Yes, there are different levels of intollerance, but I think some people are hypochondriacs and there really isn’t anything wrong with them.

    • Laurie says

      I have sympathy for your wife. I have not gone through the same type pain and misery that she has experienced from eating gluten. I am fully aware that I am not as careful as she has to be regarding cross contamination. I am fully aware that she suffers in a way that I never have.

      But, I’m not sure how her extreme suffering somehow negates the validity of my experience. I feel better when I don’t eat gluten. Period. That is good enough for me.

      I claim to be gluten intolerant to some degree, and yet I have never been tested for Celiac. I just hate diarrhea more than I enjoy eating gluten. Is that so bad?

    • Amanda says

      You first are grateful for the fad dieters for increasing the number of foods your wife now has access to, then one paragraph later you are infuriated by those on that ‘fad diet’.

      I agree with the other commenter that your wife’s suffering, however awful, doesn’t invalidate my experience because my symptoms are different. I tested negative for celiac (but positive for intolerance through an independent lab blood test), but suffered for years with a variety of symptoms from ‘IBS’ (chronic diarrhea and constipation, excruciating stomach cramps), headaches, joint pain, nausea, periodic vomiting. I eliminated gluten and nearly all those symptoms disappeared within about 6 weeks. No, I don’t get an auto-immune reaction that causes malabsorption, but I’m not a hypochondriac either.

      Don’t dismiss other’s experiences because they might not be as severe as your own.

    • craig says

      I understand what your wife is going through, i was an army ranger and as such was in exceptional physical shape but over the last ten years have been diagnosed with lactose intolerence,ibs,fibromyalgia and divorticulitos and have gone from 240 lbs and well muscled to 150 lbs as of today :/. I am just looking into this but it all fits any info on gaining healthy weight would be appreciated

    • chasity bray says

      I have all the symptoms of celiac but i dont have celiac. what i have is a messed up system from illness! its hard to be gluten free but whats even harder is gluten free soy free corn free dairy free msg free tomato free, pork free (new one) because your system is so messed up from illness and immune system problems! Some of those are allergies and some sensitivities but they all make me ill in some way and it sucks!!!

  225. says

    Hi Chris, great article.

    I have not had any testing, but about 11 months ago (during my pregnancy) I developed chronic “itchy” ears, and a horrible, itchy, bumpy, cracked rash all over my hands, and eventually it spread to my lower legs. These symptoms seemed to come out of the blue. But about a month ago, I decided to cut wheat/gluten out of my diet 100% (I don’t eat dairy). And WALA, everything was gone within a week! I was normal again.

    If I even get a tiny amount of wheat in my system, my hands and ears start to get itchy/rashy all over again.

    Does this sound like an allergy? an intolerance? or an autoimmune reaction like CD? It is so strange that this seemed to come out of the blue.

    • Alicia M says

      Meg- to me that sounds like possible Dermatitis Herpetiformis, which is a gluten intolerance related to celiac that manifests itself as a rash.

  226. says

    I was recently diagnosed with Hashimoto’s Disease and have had the Cyrex Testing done. I have gluten, dairy, grain and quinoa sensitivities. Pretty much everything Cyrex tests for, I had a reaction to. I cut all of those foods out of my diet 8 weeks ago and have since lost 24 pounds and am starting to feel better. I have some other issues to smooth out so there hasn’t been an immediate change in symptoms and I don’t feel 100% better yet. I had no idea that I had these sensitivities since I didn’t have the typical symptoms that those with a gluten intolerance have. I’m grateful for the Hashimoto’s diagnosis if for no other reason than to find out that I was eating a diet that was causing such internal damage.

    • Meredith says

      Thanks for sharing your story. I also have Hashimoto’s. Just wondering, do you know which particular Cyrex test checks for all the gluten and dairy sensitivities? I’m going to ask my endocrinologist about ordering me one of their test panels. Thanks!

    • Chris Kresser says

      Yes. I prefer Cyrex’s panels, but I sometimes use Eneterolab’s cheek swab for the genetic variants.

      • says

        I’ve been gluten free for eight years but I’m self diagnosed. I’d love to know for certain, however, I’m not willing to consume gluten again for fear the bad symptoms I was having might return. I opted to have the Enterolab cheek swab done and the test showed that I have two copies of gene that “predisposes to gluten sensitivity”, but I “don’t have the main genes predisposing to celiac sprue.” The lab also stated that the gene test they use is not cleared or approved by the FDA. I’m glad you’re addressing the complex nature of all the proteins involved, rather than the typical response that gluten or gliadin is the only culprit. I recently read a beer blog where the writer was worried that the new process of creating gluten free barley beers using the brewer’s Clarex enzyme might not get rid of all the other potentially harmful proteins in the final products (they don’t seem to bother me.” Keep up your good work and thanks.

  227. Beth says

    I went gluten free a few years ago. I quickly realized oats were also a problem. After a while, corn also became a problem. I’ve been paleo/primal now for about a year…I don’t eat any grains at all anymore except occasional white rice. I eat very little dairy, but it doesn’t seem to bother me when I do have it. I have also found that I can no longer tolerate apples, pears, or grapes, and chocolate just this week is possibly giving me problems. The fruit and chocolate seem to cause the same stomach pains and bloating that grains always do…but they are not grains. I’m a little confused about this, and am wondering if anyone else has had similar problems? I would like to understand why I can’t eat these foods, and if there are other similar foods I should avoid, too (so I don’t get MORE stomach aches!).

    • MJ says

      Check out info on the FODMAP diet. There are many people (myself included) who have the same issues you’ve identified and the FODMAP diet has changed my life pretty dramatically. Any time I “cheat” or go off the diet, I end up miserable, bloated and very regretful. I never realized by severe GERD was related to the FODMAP foods and I was taking omeprazole for years. My gastroenterologist is the one that told me about it and I thought she was probably crazy but lo and behold, she was right.

    • Roni says

      I just found out that that there are at least 19 foods that cross react with gluten. they call is cross reactivity. Coffee, chocolate, oats are on that list. If you google “19 foods that cross react with gluten” you will get several sites you can read up on the topic. I just went to a functional medicine doctor who is testing me thru the Cybrex lab to see if I have an issue with these foods.

    • Susan 2 says

      Apples (and maybe pears and grapes) are coated with a soy wax and of course chocolate contains soy lecithin and dairy (some brands of chocolate also contain gluten). If you are sensitive to soy this might be why you can not eat these foods, try organic foods they shouldn’t have any soy wax on them. Good luck.

  228. Mindy says

    I am one of those tested for CD and it was negative, so I spent many more years in pain and poor digestion. Then went Primal and improved 90%. But still had issues. I recently had a comprehensive stool test that showed a high number of IgA antibodies for gluten. I would have an occasional piece of bread, but now realize I am one of those that can not afford the “cheats” if I truly want to heal.

  229. says

    The paleo/primal community insists that removing grains (esp. those not properly prepared) is a necessary component to a healthy lifestyle. In your estimation, is this true for *all* people (or even most)? Will those without any negative health symptoms benefit from cutting grains out of their diet?

    • Chris Kresser says

      I’m a little more relaxed about this than most. I don’t think there’s strong evidence that properly prepared grains contributes to disease in the context of an overall nutrient-dense diet. We know that relying on grains as a staple at the exclusion of more nutrient-dense foods is problematic, and we know that many people with gut issues and inflammatory conditions don’t tolerate grains well. We also know that grains have anti-nutrients like phytate that decrease mineral absorption and protein assimilation. That said, if you are fundamentally healthy, you’ve eliminated grains from your diet for a period of time, and then you add properly prepared grains back into your diet in moderation with no adverse effects, I don’t really see a problem with that. They should never be a staple and they shouldn’t displace more nutrient-dense foods. That’s my take—hope it helps.

  230. says


    What if you’ve gone 30-60 days gluten free, then added it back in and felt nothing? That’s me, but I still stay almost gluten free, even though I feel no bad effects from gluten. No cramps, bloating, digestive issues, spacey feelings the next day… nothing.

    There seem to be many diseases that are said to have been caused by long term gluten exposure (I assume that it was actually the long term leaky gut), and don’t want to look back one day and wish I hadn’t valued hamburger buns so much, so I skip them.

    Is this an overreaction?

    Thanks for the great work!


    • Chris Kresser says

      If you’ve done this and didn’t experience a reaction, you’re probably not gluten intolerant. There are three possible reactions to gluten: CD, NCGS and tolerance. Seems you’re in the tolerance category.

      I do recommend avoidance of gluten even when you’re tolerant as a precaution, but in your case eating it on occasion as part of an “80/20 rule” will probably not hurt.

      • moffeesnob says

        Would love to hear more on this from an expert. :). I too eliminated gluten (and all grains) for a long period of time. Now, if I have them in small amounts i’m ok, but if I go overboard, I start to get symptoms again. I suppose my tolerance is pretty low – but at least I don’t SEEM to have to worry about cross-contamination type sensitivity.

        *again, i’m mostly paleo but hey, i’m not perfect. :)

        • haley says

          I wonder if it was/is a gluten allergy? I’ve had severe reactions to gluten for years – even a crumb would send me into a downward spiral with everything from rashes to vomit-inducing-migraines to horrible sinus infections. Doctors thought it was Celiac but all my test results came back negative. I stayed completely gluten/dairy free for two years, had some gluten (accidentally) just recently, and no reaction. None. My naturopath suggested that the restorative therapy I’ve been doing on my gut through healthy eating and supplements has healed my intolerance to gluten. Which kind of makes sense, since you can reverse many food allergies simply by avoiding them and giving your gut time to heal. I will always avoid gluten, but at least now I don’t have to stress so much over the cross-contamination :)

          • says

            Hi Haley. Could you tell me what you eat, cos my guts are driving me up the wall. I feel I have no choice but to eat wheat and gluten foods on a daily basis cos I can’t eat much else. Fruits fail ! Dairy fail ! Spicy foods fail ! Nuts fail ! I wonder how I survive. This is crazy.

            • Helen says

              Hi Serben
              I have been experimenting with my diet for a long time now. I went Gluten free in July 2013 and after 2-3 weeks I felt so great. I still feel like my best self. I gained clarity and energy and just feel overall happier. The references I used for this change are as follows:

              Gut and Psychology Syndrome. Dr Natastha Campbell-Mcbride
              An fantastic book and reference, I think this could be a great starting point for you.

              Norishing Traditions. The book that Challenges Politically Correct Nutrition and diet Dictocrats, Sally Fallon

              and http://www.mercola.com

              I hope these help.

            • Meg says

              Hi Serhen,

              I was like you about a month ago. Guts driving me up the wall. I have a peanut/tree nut allergy, lactose intolerance, oral allergy syndrome (fruits) and I was going crazy–seemed like I couldn’t eat anything. Going gluten free has been the best thing for me–I feel great and I’m not running to the bathroom in pain. For protein, I eat meat and take a daily supplement. It’s hard at first because a lot of things are manufactured in places with nuts and it can be disheartening. Being a broke college student, it’s hard to afford places like Whole Foods but when I “can” I try to stock up on items I can freeze and have at a later time. Hope this kind of helps

            • Lauren Perreault says

              I thought like you did because I was diagnosed allergic to soy, corn, all legumes, beef, tuna, salmon, pork, lamb, turkey, cod and other whitefish, apples, bananas, pineapple, peaches, avocado, squash, cucumbers, bell peppers, chili peppers, tomatoes. melons, nuts, etc. It got so all I could eat was white rice and chicken. I was suffering from Vitamin d and B deficiencies and was really miserable in my diet.

              I kept reading that Leaky gut could cause the vitamin deficiencies and in turn could be caused by Gluten, so I went gluten free. Now, 9 months later, I can eat almost all of the above except soy and cashews. I eat lentils, beef, corn, sushi, salmon, all those fruits, tomatoes, etc again.

              My new gastroenterologist said that the leaky gut was letting all the undigested proteins from those various foods, which are normally too big to penetrate the intestinal wall but because of gluten damage were leaking into my blood stream and setting up the immune response. Now that my intestinal lining is healing, the proteins don’t cross the barrier and only amino acids get through as Mother Nature designed, and now the other “allergies” have all resolved themselves. And it is not as hard as it looks, because after being gluten free for a few months I accidentally ate some and had a whale of a stomach ache for two days, so now I look at cookies, cake, bread, etc, as poison and have no desire to cheat.

              • says

                Great story! I would have put you on bone broth (made with no vegetables, just bones, water, salt and wine or cider vinegar and boiled for hours) and only when all symptoms had gone I would have added in one veg, or one meat or one fish at a time watching for reactions. It works too, but does take some time. I have solved Crohn’s, ulcerative coitis, and various other things in this way. No one should ever eat any grains, by the way. They are alien to this species (homo sapiens) so no wonder we all get sick on them. Even back at the dawn of agriculture the sickness, malformations and species deterioration were clearly happening. Why did we stick with these dratted ‘foods’? We got hooked to the gluteo-morphines. We have been addicts ever since, and fallen prey to a host of infectious and parasitic diseases due to our stupid persistence in eating the wrong food. Would you feed meat to a koala bear? No, it would get ill. Or put a cheetah on a vegan diet? No, it would fall sick and die. Each species has an evolutionarily diet, and ours is meat, fish, above ground veg, eggs, and fruits. What’s not to like?!

                • says

                  I actually did do the bone broth thing and also did a lot of supplements for gut healing (my doctor is an integrative medicine specialist.) And I did add the foods slowly and in very small quantities to test for reaction before increasing. Also did a few months of green, mostly spinach, yogurt, and berry smoothies with a probiotic. Now I try to eat mostly organic, farmers market veggies and grass fed meats and free range eggs (and I do mean cage free free range.) So happy to feel better!

            • Maria says

              I know this is super late, but maybe you need to take an extra supplement to aid in your digestion for example a combination of digestive enzymes and hydrochloric acid. It’s said to work well if that’s your problem. Good luck!

          • says

            Hi Haley!

            I experience similar problems. No medical aid save for Dr Google who lives on the internet! 😉 ..My symptoms with sugar, wheat, beans barley & oats which I too believe are gluten contaminated and in all likely hood seem to be processed together with all the above on the same factory plants. I am in South Africa.
            My symptoms are sinus driven vomit migraines just like yours, which can last up to 3 days. Every time I pig out on anything gluten contaminated esp when I bake with sugar and flour, same terrible problem occurs all over again, & I so love my baking!
            Due to the above, I have been on grandpa headache powders ever since childhood, not knowing what was behind my problem.. and think in part it has damaged my stomach lining whereby any gluten contaminated food I eat causes a flare up of stomach ulcer/s. For that I juice aloe into a green smoothie and fill my stomach up before going to bed. I know it has healed when I run lemon juice past it. I can feel it. Aloe also seems to help with my sinus problem. I find a good remedy is a little apple cider vinegar or fresh lemon juice with a bit of salt and bicarbonate of soda added. With an ear bud swirl all around deep in nose, throw head back and sniff it in. I then get rid of all that gunk by blowing my nose seems to clear my sinus which the my trigger for my vomit migraines.. Repeated a few times daily together with drinking lots of water, seems to help flush it out. I also drink hot lemon water with bicarb added 1st thing on awakening on empty stomach. With the recurring ulcers if I pig out or go on a gluten binge they return. I once vomited blood. But since I know know what the problem is, I am a lot more careful now, and do not allow it to get that far any longer. I have it more under control now & I am perfectly fine as long as I avoid it.

      • Robin Senor says

        A friend of mine who is ann allergist and immunologist on the Harvard medical faculty has a theory that those who display gluten intolerance may be able to remove it from their diet for a time and then re-integrate. The theory is that like some other food intolerances, you can suffer from being exposed to a certain thing too much, but after a time away from it, eat it in moderation.

        • says

          Your immunologist friend has not grasped that the reason we humans react to cereal grains is that our defence systems rightly try to get rid of them from our bodies. No one should eat grains, they have always done us harm. Have you read Loren Cordain’s work, or Jared Diamond’s. Since all grains offer very poor nutrient provision, and nothing that we cannot get in better form in proper non-grain foods, why on earth would anyone sully themselves by eating such things? Look at beta-carotene: from any veg source it has to be converted through multi-stage system to become the real deal, vitamin A. No baby can make the conversion, few women can, and most of the elderly cannot. Even those who can cannot unless sufficient fat is there, so all those vegetarians and vegans are getting Vit A deficiency, and if they are pregnant, God help their children, as they won’t have enough to go round. Vit A is now known to be essential for the outer body (not the organs) to be symmetrical, so anyone with one foot bigger than the other, or a wonky smile, or one breast bigger than the other can be pretty sure their mum did not eat enough animal form of Vit A (i.e. liver) when she was pregnant, or before she was pregnant. And yet my government (UK) and probably its the same in the US specifically advises pregnant women to avoid eating liver. How ridiculous is that?!
          In ranting mood, hope it doesn’t offend.

      • Bailey says

        My name is bailey. I have always had a rash on my elbows since back in the day. I thought nothing of it. I am now fifteen and I had a terrible break out. Scabies had been running about and my family had thought I had scabies. I went to the doctors and they treated me for scabies, nothing. Treated me for an infection on the skin, it cleared up my elbows but it did not help what was on my legs. My rash has cleared up immensely in the past two weeks but I had a biopsy done. They had taken some of the rash off of my elbow. I got a call back, two weeks later. They said that I was gluten intolerant. But after I had ate gluten, I did not use the rest room. I use the the restroom normally and do not feel bloated. I thought it was a gluten intolerance but reading this, I am just thoroughly confused.

        • Roni says

          50 shades of gluten intolerance. gluten intolerance can cause the bloating, gas, stomach upset, headaches, rashes, scabies, hurting joints, brain fog….. the list is endless. Some people might only experience one symptom; some might experience several. You might think the only thing you are experiencing is the skin rash but then going gluten free several weeks later you might think to yourself “my mind is feeling clearer or I haven’t had gas that past few days”. Sometimes we are just go used to the way we feel that we don’t think about all the issues until we no longer experience them. With the scabies I would also go diary free for a period of time as many people with scabies find they do better with no dairy and so many people find that if they are gluten intolerant they are also intolerant to dairy.

          • Roni says

            I also forgot to mention. Celiac is the one that will send you running to the rest room after eating gluten. If your just sensitive you might be regular or you might experience some loose stools or you could also be constipated.

        • Anne Tripp says

          My daughter had the same elbow rash when she was young. Bumpy, sometimes raw from scratching but often whiteish raised bumps. She used a steroid cream which would clear it for a while. Its Dermatitis Herpetiformis, and can be cleared with a gluten free diet. Now her brother (19) is getting the same thing. He eats a lot of gluten. I get eczema from gluten and my husband has another skin condition which are open sores on his shins. We’ve found a gluten connection with our skin issues and I’m suspecting our kids have just inherited our intolerance. Regardless of the actual diagnosis, I encourage anyone I meet with skin issues to eliminate gluten.

        • says

          If you had a biopsy of itchy skin and they told you it was due to gluten, you don’t just have a “gluten intolerance” you have dermatitis herpetiformis, which is a type of celiac disease presentation. Despite the fact that you don’t seem to have gastrointestinal symptoms, you WILL be harming your body by eating gluten. If you have celiac and continue to eat gluten, you are setting yourself up for various gastrointestinal cancers, etc. You need to stay strictly gluten free the rest of your life, unfortunately. However, it is a lot easier these days! You can get lots of help here though.