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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 did forget to say that I found it necessary not only to eliminate gluten but also soy and corn I consume organic raw grass fed dairy and follow a low carb regime based on paleo type guidlines before I got gluten the results were fantastic. I could stay awake all day was able to have a good nights sleep, could get out of bed without been stiff and sore have lost 20kilos so far but the best result of all was been able to leave the house with out freaking out or having the over whelming feeling of wanting to end it all due to depression and by the way love your recipe for buckwheat pancakes!! Cheers
Hi just wondering how long does it take to get over gluten exposure I diagnosed myself back in February by process of elimination after years of suffering from anxiety, depression, fatigue, digestive issues, aches and pains, brain fog and extreme weight gain. Started to improve in all areas untill I got gluten 4 weekends in a row, the 4th time was a big one (eating out), its been 3 weeks now and I’m still sick extreme fatigue, aches and pains etc I got so bad I thought it was something else and have been back and forth to doctors test show I have inflammation, low b12, iron and D vit but everything else is ok. I still think its from the gluten the dr calls it chronic fatigue or some type of arthritis I’m a little worried because I haven’t been as sick for as long. has anyone else had this problem?
I started a grain-free and legume-free diet 5 days ago. I don’t think I have a strong reaction to either, but also feel I have an extra 10-15lbs that I can’t loose despite 4-5 days of vigorous exercise a week. I’m also a life-long sufferer of eczema (a skin condition the medical industry doesn’t seem to care too much about).
Here comes the ‘graphic’ part; since starting the diet I’ve noticed that my stool is very loose. I’ve always had regular, solid (but not hard) stools in the mornings and usually eliminate 1-2 times a day. Sometimes in the mornings my stool is looser and I believe it’s because my coffee consumption (1 cup in am). Cheater notice- I used soy sauce (gluten free) on day 2 forgetting that soy is legume, but if anything my stool has been getting looser over starting the diet.
I do consume dairy (coffee creamer, milk, cheese) and fruit (mostly berries and apples). My question is about whether this is normal, a transition maybe? Thanks!
A while back, I had horrible stomach pain including night sweats. I went to the ER and wound up having emergency exploratory surgery. It was discovered that my bowel had perforated and had to be re-sected. I was tested for everything including celiac and cancer, but no cause was ever determined. The doctors had no explanation, no recommendations to ensure this didn’t happen again, and was told to continue eating normally. I healed, but noticed I had consistent gassy stomach sometimes accompanied by constipation. Since my doctors obviously had no clue, I decided to figure this out on my own. As soon as I eliminated grains and dairy, and replaced the calories with high quality fats, I lost weight and my stomach pains disappeared. I’m fairly certain my bowel issues were due to a wheat/gluten and/or dairy intolerance. It’s frustrating that as a layperson, I was able to fix my issues when educated “experts” had no explanation, no suggestions, no recommendations, and no real concern. Thankfully I was able to figure it out, but I think articles like this one are so important to get the message out there! Fat is not the enemy, grains are!
My daughter went off gluten and dairy and her symptoms of head ache, stomach and Indigestion were gone. She 16 and ahe wanted to try to eat dairy so she tried taking Lactaid. She didn’t have any symptoms. Then she just began eating dairy again. Problem is that she has a chronic lip blister problem. Just in one spot where her braces use I rub her lip. He blister is visible and if course bothers and embarrasses her. It was suggested by a nutrition store worker that she go off dairy and all carbs again. We did the blisters got a bit better but not completely. Just this week she began having stomach aches again. Wel she had corn chips at a Mexican restaurants. I approved that, but she was sneelking chips at home that were labeled gluten free. They contain corn. So I guess she can’t do any corn now either. However even when she was completely off dairy and grains. She still had the blisters. And after 2 weeks ahe lost no weight. She only ate veggies, protein nuts and small amounts of fruit. She played tennis 2 1/2 hours 6 days exh week. Still no weight loss. She’s probablay 10 to 15 lbs over weight.
I suspected I had a gluten intolerance because of chronic gastrointestinal pains, diarrhea etc. I have been on a gluten free regimen for three months and am undergoing an endoscopy in two weeks. I started having gluten again three days ago and was surprised that my gastro stuff did not appear again. I am questioning whether or not I have an intolerance in the first place. However, I could not sleep the first night, have felt varying degrees of stomach discomfort, and when I complained to be lightheaded this morning, my wife asked to do her blood test for diabetes, it showed my sugar level was 285. I have had a colonoscopy, lactose and fructose tests, blood test for celiac, foreign pathogen blood test and a bunch of others and all were negative. I am totally confused. In a sense I wish I had the diarrhea again because then I would be sure it was gltuen.
Any insights?
I have been suffering from alopecia areata, which is an auto immune disease that causes patchy hairloss for about 3 months now. Since there is minimal research on this and no known cause, i had to do extensive research myself on possibilities for why this was happening to me. for the past year i have also had very strange symptoms after i eat wheat (which include, dizziness and extreme fatigue, irritability, restlessness, faiting spells, etc.). A number of friends with CD and several dietitians have suggested that I go gluten-free. After quite a bit of research I figured out that because all auto immune diseases are harbored in the same gene (alopecia areata & celiacs), my hairless may be a symptom of a gluten allergy! Who knew ? I also learned that a lot of people who a gluten intolerance experience hairloss a lot like mine, and once they cut it out, their hair grew back.
Needless to say, I cut out gluten a few days ago, and already feel better. No more drowsiness after I eat, and my hairloss seems to have at least slowed down a bit.
I highly recommend that if you are experiencing alopecia areata, you should try to cut out gluten because this could be n unknown link to your hairloss.
My son has alopecia and we are begining a GF challenge. Just curious how long you stayed on the GF diet and did your hair return?
Hi,
I am 31, male and for the last 6 moths have been having mild to strong pains in the stomach. I have had an ultrasound, urine tests, blood tests, colonoscopy and endoscopy and so far nothing. When it first started it was just a mild pain in the stomach and then a few weeks later climaxed at work (remote minesite) where it was a 8-9/10 pain and I felt severely foggy and was close to vomiting. It had eased by the time I got to the doctors 2 days later (I had also taken some ulcer medicine off someone at work to see if that would help). The Docs put me on nexium suspecting an ulcer however after a month on this the mild pain was still there so they took me off and we did more tests.
At this stage they have no idea so I am trying to go gluten free to see if this helps. However my wife cooked a gluten free lasagne but forgot and used whitesauce she made with flour. I had this for Tea lastnight and for lunch today. Also I swapped cereals to a gluten free oat cluster mix 2 days ago (from and rice based gluten free cereal). I feel like crap today and wonder if the affects can come on so quickly?
My question is how long does it take for people to feel the affect of gluten or other grains once eaten?
I have also had a cold for 2 days which is making me feel worse!
Thanks
The day of my father’s funeral, I began having extreme heartburn from drinking water and a feeling of my esophagus being pulled apart. While waiting to see my doctor (2+ months), I visited a naturopath who asked me to try an elimination diet. Something I was eating was causing my allergies to flare but I never had trouble digesting foods. I did the 30 days of grains free and now I can’t touch anything made with wheat! As per the doctors instructions, I tried pita bread and thought I was dying. My abdomen/intestines were cramping and caused a full day of stress. I was dizzy and had brain fog. It was awful! I then tried a piece of whole wheat bread and it felt like I was having a heart attack. No more grain for me!!
But I still can’t understand why my intestines are suddenly messed up from grain. It’s been 42 years of no problem and now this?? Frustrated to say the least. It’s not the end of the world to never eat grain again but I’m curious to see if I can eat gluten free products.
18 months ago on a whim, (and without much information) I joined my husband for a 60-day Paleo challenge. Within 3 days of starting, I began to feel different. For one, I was falling asleep before having to take a sleeping pill. I started to do a little research and discovered that I’ve been suffering from some classic CD symptoms/conditions for YEARS: Hashimoto’s, geographic tongue, insomnia/anxiety, migraines, lactose intolerant, irregular cycles…the list goes on! I scheduled an appointment with a gastroenterologist who recommended a gluten challenge and endoscopy. I would like a clear diagnosis so I know whether my 3 kids should be tested. Within a few days of starting the gluten challenge,a number of symptoms returned and I decided to postpone the testing and resume a gluten-free diet. My husband is Italian and we were planning a summer trip to Italy, so I figured that would be a waaaay more “fun” way to do my gluten challenge. I am now home from Italy and 5 weeks into my gluten challenge…My endoscopy is on Monday. I have been feeling really bad and caught a cold (my first illness since removing gluten from my diet!!) that has lasted weeks. My immune system is definitely struggling! I’m realizing how badly I have felt for years but just managed symptoms and not the causes(s). But, I’ve invested 5 weeks and I’m in the home-stretch now. I am looking forward to resuming eating Paleo as soon as my procedure is done. If I get a positive CD result, what is your recommendation for screening my kids? Would a positive genetic blood test be enough to assume they should also be gluten free?
I suspect a gluten intollerance in my 16 month old baby but do not know how to go about trying to confirm my suspicion. Every since he began solids at 4-6 months he would eat very little cereal and have very bad cramping and constipation if he did. I mentioned this to the DR and he said to simply ski cereals and continue with fruits and veggies. Fast forward to 16 mts and he is not a bread eater (FYI we eat whole wheat bread) and when he seems to eat it, he has severe cramping and constipation which keeps him up. He does it pasta often and I’ve only experience the cramping on some occasions. Can this be a Gluten intollerance or is simply more of a digestive issue?
I was diagnosed NCGS a year ago, since then I´m on s strict diet, I don´t eat diary either, what do you think of a reintroductin gluten test to know if gluten is really bad for me?? Could that be such a big problem??
I know I have problems with gluten, and have been gluten free for some time. I think there may be cross-reactive foods in my diet, and I’m wanting to take the Cyrex test for that. Just today I found out that I’ll need to re-introduce gluten into my diet in order to take the test, which frankly scares me. I can’t eliminate all the cross reactive foods ‘just in case’ so I’d like to take the test. On the other hand, wheat is addictive for me, and once I eat some I can’t stop until I’m so depressed, weepy and sleepy I can’t stand it anymore (usually about two weeks). Thoughts? Anyone else been in my shoes? Is re-introducing gluten temporarily worth the test results?
I am allergic to gluten, soy, lettuce and chicken. I have cut out everything and workout 3 days a week and I can not seem to lose any weight. Before my body started shutting down from gluten I was 20lbs lighter and now it has been a struggle. I eat fruit, greens and meat once 1 week if any. Does anyone have any suggestions?
I decided to try a no wheat, gluten free diet to see if it helped my digestion issues. After 6 weeks as of yesterday I ate one bite of biscotti. I immediately had major skin flushing of bright red skin all over my face, neck, chest, and arms. Followed by a severe headache, vomiting, and diareah. This reaction was so severe not sure if I had an allergic reaction to something else I ate for lunch at the restuarant or if that small of a bit could cause such a reaction….. Is it possible to react that violently?
Were there any nuts in the biscotti? That sounds like a rather severe reaction to gluten if you’re not allergic to wheat.
I’m not sure if there were any nuts in the biscotti, But I eat all types of nuts all the time. There wasn’t anything unusal about what I ate for lunch either, if this reaction isn’t possible from gluten then I should probably call the restuarant to see exactly what was in the dish in order to prevent having this experience again.
Biscotti almost always have almonds in my experience. Be very careful with almonds from now on I would think.
Hi Beth,
My daughter has been gluten free for gluten intolerance or sensitivity and ate some gluten at a school potluck after a period of strict no gluten. It also happened to be a baked sweet, ie. sugar and gluten (her old favorite combo upon which she based her whole diet in the past). She had a nearly immediate reaction with brain fog, and malaise. Quote at the time “I feel so sick. Confused and tired and out of it” It was quick and dramatic and lasted a few hours. I looked this up and found others on other sites who have experienced similar reactions. I know that she does not have Celiac. I really suspect that there is something about the sugar/flour combo that makes it worse, but I could be just making that part up. Mostly I want to give credence to what may very well have been a reaction to the gluten. Think about it this way; some people who are allergic to penicillins will be given small doses repeatedly until they are temporarily desensitized. This works only while they are continuously exposed to pcn. Should they stop the desensitization and they become reexposed to pcn, they would have a fulminant reaction. I am not claiming that this is the process by which you or my daughter experienced the reaction, just suggesting that it is possible. This stuff is complex and not yet well understood or documented. While it is possible that it was coincidental, or unrelated, I leave open the possibility that this was a true reaction to gluten.
Duh, I should have said that she also had the facial flushing with hot ears and all that jazz. A week after the first reaction, I got to see it myself after she decided that Xmas was a good enough excuse to have a piece of cinnamon roll. She immediately felt sick and flushed on her face nearly purple all the way up to and around her eyes. On that occasion, however, there was a confounding factor. She had eaten the cinnamon roll with some homemade Kombucha. That second reaction, which I was present to witness, could have been due to the slight etoh or fermentation of the Kombucha vs. the gluten. Confusing, I know!
I love your articles. but I have been wondering why quinoa is not good, or why is not accepted as paleo?
Thank you
Thank you!
I’ve never been diagnosed as Gluten intolerant or Coeliac (British by the way), as I’d worked out I had a problem and cut out gluten before seeing a medic. The idea of having to consume gluten for 6 weeks before having a blood test fills me with horror! I have cut out all gluten from my diet. Not too difficult as living GF is substantially preferable to the alternative. My problem is a seeming sensitivity to GF products: all replacement breads and crackers produce similar problems (cramps, nausea, diarrhoea). I cannot even drink alcohol if it has been exposed to wheat – including wine, they use wheat to ‘finish’ it – nor drink the GF beer. Most information available on the UK coeliac forums insist there is not a problem with alcohol or GF foods, and that ALL coeliacs can tolerate up to 20ppm of gluten without issue.
I read with interest your comments regarding oats, rice and milk. I cannot eat the treated oats. and have been suspicious about rice for a while (but again have been assured there is no problem). Milk has been an issue too, but haven’t eliminated it from my diet entirely. I will now!
This has been the most illuminating few minutes of my life since coeliac crept up on me a few years ago. I have auto immune RA which was diagnosed when I was 23 which requires treatment with Bio-agents. I hope removing these few other things from my diet (rice, milk, corn) may improve both the gluten problem and the RA. Thanks for such useful, accessible, well written information. Now, could you write to Coeliac UK and tell them???? They need help.
I am lactose intolerant (have been for years) and have been doing a wheat free low gluten diet for a few weeks and feel great! I still have condiments so can’t declare to be gluten free. I used to wake up sluggish but can now jump out of bed before my alarm. Weird though since changing my diet I remember my dreams every night!
Hi,
I need som advice and help!
I initially went vegan, and my diet was very heavy in what I know now, high fructose and gluten . My body basically over loaded and I had a severe reaction. This is about 4 years of complaints, mood swings and stomach issues I told my doctor. I went to a GI, who took me off gluten, agave, honey and a multitude of other foods- within 3 days I was 100% better. I have now had blood test and negative for celiac but when I do eat gluten on purpose these are my symptoms : ‘hangover’ , severe abdominal pain (visited ER 3x) , headaches , constipation, D, gurgling stomach, loss of concentration , fogginess. I am at a loss. I know that I’m effected by gluten but the GI doctor seems to be Blaise about my symptoms. This is 4 months of servere issues , I’ve had it and feel so alone . Does anyone who’s been through this have any suggestions ?
I had similar happen but I’m a bit confused. What are you asking? You are gluten intolerant; those are the symptoms. Avoid gluten.
Again…i’m not quite sure what you are asking. Would be happy to help…if I can.
I agree. This is easy. You don’t need a doctor or anyone else to tell you this. How are you at a loss? My suggestion is the same. Don’t eat gluten. Don’t eat grains.
You did the elimination diet. You removed them, got better, re-introduced them, got worse. So…remove them, get better. DON’T REINTRODUCE THEM.
I desperately need advise from you Chris, as I’m atmy wits end. I have been suffering from anxiety and depression for the past 16 years. I’m 38 now. I was anxious as a child also. Suffered from poserior uveitis since I was 14, have been battling with acne and cystic acne for the past 13 years and bad knee pain. The past few years I’ve been suffering from constipation and adbominal pain and discomfort. This dull pain throughout my stomach radiates down to my rectum, and it makes me even more depressed. By the way SSRis have done nothing for my depression. I started taking niacin 3000 mg three months ago and have been feeling slightly better, but my stomach pain which I get at least once a week is driving me insane. Do you think I could be gluten intolerant? I tried going gluten free last year, but I live in a small place in southeast Europe where you cant find many vegetables except peppers, tomatoes, potatoes and cabbage. This past month I’ve been having severe cases of anger and rage, I have no patience even for my children. And I forgot to mention that the last 3 years I get this numbness/tingling in my entire body, from my neck downwards, which lasts for 2 months and dissapears gradually. Your opinion would be greatly appreciated.
I´m not an expert at all, I just want to help you feel better, I´ve been trawling all over the internet looking for answers to my own problem and from what I´ve understood and If I was you I´d seriously consider going gluten free for at least a month and see. Good luck.