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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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After terrible brain fog for three years and going to the doctors making different testes on me and finding nothing, I started to eliminate some food from my diet. First I eliminate dairy and started to feel better, but still had brain fog and being tired all the time, I was 40 years old, then I removed bread and it was good feeling, almost no brain fog, just sometimes, then I started to read different articles and realized that I have gluten problem. I eliminate all the foods containing gluten, it took some time, because it hidden in sauces, started to read labels. Now it is about 8 month totally gluten free and fell good, my head is clear and I have a lot of energy. No gluten ever again!
Thank you very much for this great article and all the wonderful comments from readers. I am motivated to start a gluten free diet, if this indeed is the cause of all my issues. I have to get my husband on board as well. He’s been the one who pointed out that he has reactions every time he drinks milk. But, he only drinks milk with baked goods (cookies, pie, cakes), maybe it is actually the gluten that causes his GI issues. He has mentioned blood in his stool several times in the past years.
I hope we can get to the bottom of our issues, because I cannot be so sluggish anymore. I read food label and try not to eat processed foods, we cook at home most days of the week, pack lunches when we leave the house. On rare occasions we eat out in restaurants, and we can feel it later. I also noticed that my Chinese coworker is always cold, she does not eat bread, or any other grain, but rice. Maybe the grains helped us humans keep warm, that’s why we changed our diets to begin with. I also read that the original Einkorn (German, one seed) is not used anymore, and we are actually eating GM grains. I am tempted to try this other type of wheat, to see if we could eat it instead. Does anyone have any information or personal experiences to share about Einkorn?
Thank you so much for all your help!
Evo
Evo,
Einkorn still has gluten in it, just like other ancient forms of wheat. All grain today has been hybridized, but is not necessarily GMO. GMO is a new thing, but people have been breeding plants and animals via hybridization for thousands of years.
If you are so susceptible to the negatives of grains/gluten just from occasionally eating out, then it’s unlikely that you will find einkorn to be safe for you guys.
There’s nothing magical about grains from a nutrition standpoint, and since einkorn is very far removed from modern day wheat, you’d be just as likely to find ‘paleo bread’ and gluten free flours to be as tasty as bread made from einkorn.
Roland
Glad I read this article.
I am a type 1 diabetic and have suffered from asthma during childhood and later psoriasis. About a year ago I changed from a high protein diet to Paleo in an attempt to improve my health. I don’t think I have Celiac disease, but I just don’t feel optimal when consuming gluten. I had a light bulb moment when I realized all my worst ailments were all immune related (T1 diabetes, asthma, psoriasis) and I have seen specialists on each of these diseases/conditions and all of them failed to notice the connection!
I believe all the asthma pumps, insulin injections, ointments and creams could have been avoided if I have been brought up on a gluten free diet.
However I am still having trouble getting rid of the diary and find it a bit worrying that casein could cause a cross reaction. Oh well, guess this means removing dairy could make me feel “much better” than just “better” 😀
Great article!
I suffered from IBS for many years. I have tested positive to a blood test for Gluten allergy in the past but negative to Celiacs disease (colonoscopy). When my son was born we got thrush which affected breast feeding for a short while. He has suffered from diarrhea a lot as a baby and young child and even got Giardia for several months when he was three. Some people tell me he displays autistic tendencies at times, yet we do not believe he is indeed Autistic. He is also set off by colourings and MSG in food. From Dr Google I believe he is affected by gluten, maybe causing inflammation of Candida albicans in the gut. However I have not been able to get any support from medical practitioners, family or friends on these points.
I forgot to mention that I was suffering from quite a bit of anxiety prior to adopting the paleo diet. The anxiety has subsided and no longer seems to be a problem.
Great article. Last year I gained a lot of weight. About 40 pounds to be exact. I was under a lot of stress, but my caloric intake could not have justified such a weight gain, assuming one believes in the calories in/calories out model of weight loss. I was under a lot of stress, so I am assuming that my cortisol levels may have been high. My job was demanding and performed in a sedentary manner. I did not get hardly any exercise. At any rate I went paleo at the beginning of February and my weight is finally coming off. I still consume some dairy in the form of plain greek yogurt. A few days ago I cheated and when I tried to eat a roast beef sandwich, I thought that I was going to be sick. I have had no other symptoms of gluten intolerance that I am aware of. I have only had unexplained weight gain. I have had some issues with muscle twitching which has remained undiagnosed. Fifteen months ago my blood tests revealed FBG levels of 5.1 mmol/l, elevated urate levels, lower than normal HDL, but near ideal LDL and triglycerides. Does this sound like I could be sensitive to gluten or should I be looking elsewhere to explain my weight gain? I don’t want it to happen again.
I am sensitive to gluten, and everything else at the moment. The significant thing I have noticed is the huge decline in migraines and headaches from taking out gluten. I now think my headaches and migraines are food related…after all these years I thought it was back issues.
I like you have put on weight and I am on a pretty strict diet FODMAP, and I can’t believe it but in 3.5 months i have only managed to lose 2 kg and it fluctuated back up all the time.
The FODMAP diet hasn’t helped with all areas, although overall I would say it has sort of helped. Although a lot of the foods on the low fodmap chart, are effecting me, so dietitian is not really sure if that’s the answer. I am going on a stricter elimination diet now as she think it’s more chemical based.
If I don’t lose any weight on this new elimination diet, then I know something is really up, because one would have to lose weight on the diet I am on. No sugar and handful of vegetables, certain meats, no dairy, only bananas and apples, some legumes.
I am pretty sure though what has made things worse though probiotics, terrible brain fog, nausea, dizziness, achy bones and flu like symptoms. I have been off them for about 5 days and feel a lot better. I can actually think straight!! Or else it it was tasty cheese, but really I am pretty sure it is the probiotics, as I have had averse reactions to it in the past, mainly severe stomach pains and diarrhea. I didn’t make the connection this time around, because I didn’t reaslise probiotics could cause such severe results with some people.
I have tested negative for Celiac (though after being gluten-free for months, so it could be false negative), but found my GI symptoms, mild depression, and “brain fog” cleared up when I went gluten-free. Normally if I “cheat” and eat gluten I get GI distress. However, I am an ultrarunner, and I’ve found that during/immediately after a race of 5-6 hours or more I can eat gluten without ill effect. I’m wondering if there’s a biological reason for this (something related to glycogen depletion?) or if it is somewhat psychological?
I wonder if the physical exertion lowers the autoimmune response. Kinda like your body is too tired to attack the gluten.
Hi Chris, listened to your interview on heart disease on Dr Mercola and found the item on coeliac disease via that. I am 51 and was diagnosed as a coeliac at birth. I am a total expert. It was difficult avoiding gluten. In Ireland, if you visit somebody’s home the first thing they do is shove 10 samdwiches and a pot of tea down your troat, so i became a bit unsociable. In addition to avoiding gluten, the thing that works for me is exercise and the more intense the better. I have no doubt but for exercise I would now be dead! It boosts everything in my life, pretty much immediately, literally everything from my strength to my mood. My doctor told me many years ago that i should be thankful that I was on the healthiest diet in the world if i stuck to it. I do that pretty much apart from a few beers. Strangly enough, I was told it was ok to drinnk cider but when i do i immediately get itchy and blotchy. Overall after living with this condition, my advice really, is cut the gluten and processed foods and ecercise daily. I am also pretty sure that there many people out there who would benifet greatly from a gluten free diet but don’t know it!
if you are celiac you should not drink most beers fermented from barley as it contains gluten!
Living Paleo has changed my life. I was able to quit taking my 20 years of precription acid reducers and no longer suffer with digestion issues and stomach pains. I also have almost completely eliminated my lifelong struggle with anxiety!!! I feel like Im truly living and enjoying life for the first time in my 34 years!
How about organic spelt and rye, oats(and bran)?
I thought I was gluten intolerant, given that I have cystic fibrosis, and went gluten free three years ago but it did not significantly change my symptoms. Three weeks ago I went complex-carbohydrate free via the Specific Carbohydrate Diet and I noticed HUGE differences. What is explained in the book “Breaking the Vicious Cycle” is that gluten is not the primary cause of gluten allergy, celiac, or gluten intolerance, it is the secondary cause. The real problem is that people with compromised digestion (like me) cannot digest carbohydrates down to monosaccharides, so they feed bacterial overgrowth in the colon leading to autoimmune disorders (CD). The problem with glutenated grains is that the complex carbs are bound to the gluten protein, which makes them even harder to digest than other complex carbs.
So my question is – you’ve mentioned the SCD in a few of your other posts but I have not seen you mention this problem with the gluten-carbohydrate malabsorption issue, so I wanted to check with you to make sure you know about it and I wonder if you find it valid. Please let me know. It seems to make a lot of sense, given the statistics in the second-to-last paragraph.
When I eliminated wheat products from my diet, the most obvious effect was that my hay fever disappeared, after nineteen years of having to take antihistamines for several weeks every summer in order to get through the days.
Other symptoms that I’d gotten used to – chronic nasal and sinus congestion, asthmatic coughs following winter colds, acid reflux, mild bowel problems, blood sugar lows between meals – also faded away. That was about four years ago.
Since then I have occasionally consumed wheat products and the result now is a classic toxic reaction: a waterfall at the other end about twelve hours later.
I seem also to be somewhat intolerant of corn, and I avoid all grains except rice, which does not seem to harm me. I don’t miss them at all.
I tried cutting out all dairy and noticed no difference. For the last three weeks, as another experiment, I have been drinking large quantities of raw milk, and everything seems fine.
Chris:
Surely some of the people who improve on a gluten free diet is due to FODMAP’s? Particularly those with GI symptoms.
I do my best now not to consume any wheat products. I have ulcerative colitis and if I have a sandwich worth of bread then I will bleed profusely the following day such that my stool can no longer be seen in the toilet because the water is so red and this is after being in complete remission beforehand. In addition to the blood I have much more gas, and I become irritable, sad and tired for several days.
Strangely, consuming a large portion of pork produces the same results.
I am pretty confident I have a gluten issue, although have tested negative for CD in the past when my Dr has tried to investigate my digestive issues – he told me to eat more ‘healthy whole grains’ to get my gut moving again!! Two months gluten free is all I needed to confirm an intolerance after that, as after eating some bread again I felt hungover for days! Now I feel great on an organic/grass fed Primal diet with lots of probiotics, fermented foods and occasional serving of raw milk.
I did have my gallbladder removed about 10 years ago though after months of attacks/severe pain, which I’m lead to believe can signal undiagnosed CD. What are your thoughts on this? In a way I’d love to have the firm diagnosis, but then again the results above speak for themselves!
You say: “corn, oats and rice, contain proteins that are similar enough in structure to gluten to elicit an immune response in people with CD or NCGS” but that NCGS is: “a reaction to gluten that is NOT autoimmune”
If gluten grains do not cause an immune response in people with NCGS why do non-gluten grains?
My understanding is that it is all different types of immune reactions. An autoimmune reaction is when the gluten makes your body start to attack its own self, a histamine reaction in a straight up wheat allergy is like immediate itching and swelling, and with an intolerance your body thinks the gluten is a foreign invader and starts attacking it, but it is different than autoimmune where it attacks its own cells.
You mention that some people present with ‘silent’ symptoms. When I try to imagine how these would appear I think of people with no obvious GI distress but who tend to be stressed, have thinning hair, poor sleep etc.. Symptoms which can easily be construed as part of a hectic life or simply ageing. Can you please provide a few examples of these non-obvious symptoms?
Thanks
enjoyed this article..I feel alot better eliminating breads pasta’s etc.. I have oats still, but other then that and an ocasional bit of hamburger bun..I usaully just eat it without the bun.. no gluten or grains.. its quite nice the feeling when i first changed over.. don’t miss grains
Hi Brian,
I am noticing that I feel bloated when I eat grains and am confused since receiving a diverticulitis diagnosis. What do you eat in place of grains in order to stay nourished?
Healthy wishes,
Ginny
I’m not sure if I am gluten intolerant but I know I’m sensitive. I removed gluten and felt wonderful but didn’t really notice how well I felt until I dabbled in some bread products again. I immediately experience bloating for about a day or so after eating gluten products. I didn’t know I had a flat belly until I quit eating gluten. Imagine that?!? Now I avoid it as much as possible and pay for it when I don’t. I imagine that a lot of people are like this, meaning they are sensitive to it and would experience a positive result without it, but they don’t feel bad enough to try it. Our media machine constantly tells us how wonderful whole grains are and the general population believes everything they hear on the nightly news.
Hi! I am new to this and working my way through an overwhelming puzzle right now! I am 36 years old and approximately a year ago received a diverticulitis diagnosis which was verified with two CT scans. I believe it is an immune response now, although I could admittedly use more fiber. The genetic pool seems to be at play too. My mother has CVID which took 10 years to be diagnosed and by then the damage was seriously done – we’ve almost lost her multiple times. My aunts have similar DNA but are more “sensitive” than my mother’s life-threatening state. They are all off gluten and dairy.
So it begins…I am going to the doctor tomorrow for a follow-up consult from a recent ER visit, then followed by another flare-up that I believe I got past without antibiotics even though I am experiencing inflammation. My questions begin with asking what it is you eat instead of grains if necessary? Is it crucial to come off gluten? I am concerned about ending the inflammation immediately before more damage is done. I do not want to end up like my mother and this is how her saga began so I need to be careful even though I am not borrowing my mother’s troubles. So how do I heal my gut?
My Hashimoto’s antibodies disappeared entirely after around a year on Paleo. My doctor said it was probably due to stopping wheat. I had NO (none) NADA (zip) symptoms of gluten intolerance in the whole rest of my life prior to going Paleo. In fact, I ground wheat and made 100% whole wheat bread with the fresh flour.
It was joint pain and lethargy that tipped me into Paleo. Getting rid of Hashimoto’s was a pleasant surprise!
That’s wonderful!! Could you recommend any books etc. that helped you along the way? I have Hashimoto’s myself. The thyroid replacement therapy my Dr. has me on only makes me feel a little less of a zombie. I’m going to try a gluten/dairy free diet and see if it helps and hearing your story was encouraging 🙂 Thanks.
I recently read the book “Why do I still have symptoms? When my thyroid tests are normal.” by Dr. Datis Kharrazian. Lots of information about Hashimoto’s.
Me too. Hashi’s antibodies went from the 600s to just barely above the normal range on giving up gluten. And I’d never been aware of any digestive symptoms prior to this either (although, oddly, if I accidentally consume gluten now I DO get symptoms, as in a mild case of ‘constorroea’).
It tickles me to see others getting the no-gluten message re: Hashi’s. Yay!!!!
I wrote a post (referencing Chris’ site) on my blog about the Hashi’s disappearance … “Hashimoto’s – Resolved.” The longer I was off grains, the less thyroid medication I needed. I hate the fact that wheat is no longer a food for me, but I love feeling great. Meredith, I tried reading this or that thyroid book but the best information I got was in Chris’ articles and similar readings on paleo blogs. I wouldn’t touch a thyroid book now unless I flipped to the index and saw GLUTEN was addressed. I’m into my third year of paleo now. For me, here is what works : No grains or legumes, except a little rice now and then. No vegetable seed oils. No sugar or very sweet fruits. Very limited dairy. Lots of coconut products, especially oil. Moderate protein, high fat, low carb. I keep a keen eye on The Perfect Health Diet and what the Jaminets are up to. They have a lot of good thyroid info, especially regarding the dangers of going too low on carbs.