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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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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.
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.
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.
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.
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.
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 🙂
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.
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!
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!
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
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!
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?
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?
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
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,
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.
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.
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!
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!
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…
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 !!
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
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.
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!
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.
@ 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.
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….
My mother says she is gluten insensitive, and I believe her, but she can eat some breads and not others, or some other wheat-based food and not others… is this normal? Does it point to anything other than NCGS?
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.
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.
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! 🙂
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.
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?
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.
Help!
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!
Thanks.
http://www.drdahlman.com
Could look at this for you dad.
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.
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.
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.
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” 😉
>> 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.
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?
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.
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?
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.
>> 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.
http://www.sciencebasedmedicine.org/igg-food-intolerance-tests-what-does-the-science-say/
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.
You may have been talking to the original poster, but my issues were diagnosed with scratch tests. Severe reaction to all those foods. Now, no more reaction.
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.
Yes, I agree.
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.”
Yes. And people have even been negative for celiac in antibody blood-test yet turn out positive for celiac in biopsy.
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.
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.
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
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.
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?