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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). (3, 4, 5, 6, 7, 8)
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.
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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.)
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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?
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 ;(
Dairy and meat. Stop NOW.
Cat, It sounds like you have ulcerative colitis.
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.
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.
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?
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.
I recommend you read the books Wheat Belly and Grain Brain. A lot of info on theories about why this is happening.
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!
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?
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
>> 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.
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.
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!
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*
Good Luck! I think you’ve found a huge part of your answer!
Dairy! Cut it out.
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…
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.”
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.
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!
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?
Try contacting the nutritionists at http://www.weightandwellness.com/
They can help you heal your gut. They are wonderful and knowledgeable!
Good luck and take care! Keep us updated.
You should definitely read the GAPs book and try that. It is a diet specifically for healing the gut. My family is doing it right now and it’s helping so much!
Try the GAPS diet by Natasha Campbell-McBride. Wellness Mama has a good explanation or visit the gaps diet website. I’m trying to heal my daughter’s food sensitivities with it right now.
http://wellnessmama.com/6060/gut-psychology-syndrome-review/
You may also be lectin intolerant or if your body has a hard time processing toxins, you may have a build up of lectins that have reached a toxic level.
Check GI health – endoscopy, biopsy, SIBO, etc.
Full immune panel to check all responses, as Chris pointed out there are many proteins and other aspects to wheat. What’s common between the foods you are unable to eat?
Are you allergic to latex? Some foods are cross-reactive to the latex protein, hevein. This is why I can’t have Stevia, it contains a hevein-like protein.
It’s also possible you have some underlying nutritional deficiency caused either by a lack of ingesting a nutrient or the body can’t convert the intake level of a nutrient to the active level the body needs. Consider micronutrient testing. For me, although my B12 was sky high, my body couldn’t use the type I was taking (cyanocobalamin). I had to switch to methyl B12. Just one of many supplement changes.
If you are extremely sensitive, like me, verify all medications are gluten free by looking them up the NCD code on DailyMed and checking out the full list of ingredients. I also look for known gluten free certifications when buying any supplements.
For any Lyme testing, make sure they test ALL strains.
If nothing else shows up from medical testing, you might try rotating your foods (for example, if you eat rice on Monday, don’t eat it again until Wednesday or Friday or next Wednesday etc., depending on the spacing you personally need at the moment) and eating very simply (1 or 2 different foods at once). That is one way to deal with multiple food allergies and a tendency to start reacting to everything you eat routinely. Look for the keywords “rotation diet” and “food allergies” and you will come up with more information about how to do it.
Also come up with a list of foods you have never or hardly ever eaten before, that might be helpful when you have to space out eating your familiar foods.
The spacing you will need is very individual. In your case, I would space them out as much as possible while getting enough nutrients and calories. I was fine with just a day in between but others need two or three days or even a week or two weeks. It’s thought that this way of eating can reduce the chance of developing new allergies or intolerances. I go back to it when under a lot of stress because it’s simple and easy on my digestion. (I’m a stress non-eater.)
It is not unusual to get to a point where everything is suspect. This happens to people with allergies sometimes. After you isolate your major allergens, minor ones may start becoming obvious. Also you are likely overexposing yourself to a few foods, which in someone with a tendency toward allergies/intolerances can cause more and more problems. But many food allergies are “cyclic”
rather than permanent, meaning if we stay away from the food for a certain time we may be able to eat it occasionally without a problem, for example according to a rotation scheme. I do this with tomatoes and onions.
With celiac disease, however, damage can be done without obvious symptoms and so you really do need to permanently avoid gluten.
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.
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.
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.
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.
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.
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.
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.
@MAllory.. Cancer ? Why worry the guy. He is 21 years old and your mother is how old…don’t confuse his situation
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 😀
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!
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.
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.
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.
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.
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…..
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.
Yes, people can be sensitive to anything they ingest. Look for gluten-free flatbread recipes and see if you can make something yourself with minimal ingredients. The gums are not necessarily all you can use as a binder if you can’t use eggs. For example, flaxseed or chia seed seem to work in baking (1 tbsp of the ground seed plus 1 tbsp water is one recipe for a “vegan egg”).
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. 🙁
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.
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.
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!
Lenore, all of those symptoms you went through for 30 days were actually caused by your body going through a ‘healing crisis’ that is completely normal. It would have been much better to stick to that diet. You are going to feel worse before you feelbetter.
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.
Kim,
Just curious if you were tested for Celiac and what the results were?
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…
Also brain fog, and irritability, mood swings, all left with the elimination of Gluten… Man I love vegetables:-D!!!
Some people are so sensitive to penicillin that they react to meat from animals given penicillins to stimulate growth. So I would imagine it’s possible that your body reacts to the tiny amounts of gluten from cows who are gluten-containing grains.
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.
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!
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.
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.
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.