This article was first featured at The Huffington Post. Click here to see the original article.
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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Last year my husband was diagnosed with Hashimoto’s. I suspected soy was the root of our problems since we had switch from dairy to soy milk two years prior to the diagnosis. So we made a great effort to not consume soy or products containing soy. We use natural supplements to treat the hypothyroidism it created. We thought things were going well. But 7 months later we still had antibody counts in the 450 range. We found ourselves drinking whole milk and consuming more breads over this summer. His labs last week showed antibodies back up to 750. So we are again, cutting breads and lactose out of our diets.
I’m considering having Cyrex Labs perform the array #4 test. I assume that if he test positive on several foods that he would also then test positive for sensitivities to gluten. I do not want to cut out foods that are not necessary. He doesn’t have any reaction to eating foods. Milk does tend to make the man gassy but other than that, he has always ate whatever he wanted without issue.
My goal is to eliminate the Hashi’s triggers. To maintain his health and our lifestyle. His original antibody count was over a 1000, so we are lowering it, but obviously we haven’t eliminated it yet either.
Are we on the right track with the Array #4 test?
I am sure people will call BS on this one. I was overweight and at risk for type 2 diabetes. I went on a carb restricted diet and in the course of research, found a paleo book on amazon that looked like an interesting read. Humor and the logic behind it made sense. I cut gluten out of my diet, but did not go paleo (I love cheese WAY too much). After two months, I no longer had acid reflux that I had been on meds for years. I quit taking my allergy meds and have not had allergies since. I lost 65 lbs. The biggest thing for me though was the depression. I was diagnosed in the mid 2000’s as having clinical depression. It’s not the stay in bed melancholy kind, though that can happen. It is characterized by mood swings and circular thinking to trap myself into bad thought patterns and suicidal thoughts 4-5 times a day for no reason. It’s now gone. I no longer take meds for them. I had heard friends with CD mention there were ties to depression and gluten, but I wrote them off. But here I am thinking clearly for the first time in my life that I can remember. I accomplish/finish things now. I don’t freak out when something unexpected happens. Even my family says I speak differently. They like Me 2.0. 🙂 Some reading on microbes for s different story helped shed some light on the issue. My issue was called depression because of the same root cause, imbalance of serotonin in my brain. In this article, they stated that almost 95% of your serotonin is generated in your gut. I can tell the difference, too. One day, accidentally had some gluten and within 2 hours wanted to call my boss and quit and start a fight with my neighbor of 15 years over parking, on a Saturday! I just had to stay home and ride the rest of the night out once I knew what was going on. I feel kind of bad, it makes me feel like I’m high maintenance. I don’t want to be “that guy”. My friends and family help remind me it’s no different than them having their food allergies. If it’s a choice between being “that guy”, and the suicidal whack job I was before, I’ll be “that guy”. I’ll try to tip more though out of guilt. 🙂
After 3 months of being heavily bloated, nautious and with a weak bladder I visited the doctors probably up to 10 times, took more than 5 different blood tests with Ceolic disease being one of them however it came back negative. After speaking to a lady who has the disease she told me it was possible to have allergies to wheat and gluten even without testing positive to the disease so I decided to cut pasta, bread, noodles etc out of my diet for two weeks and I immediately felt better and my stomach shrunk back to its normal size. 2 weeks later I thought I would have a cheat day and made some stir fry noodles with soy sauce. Big mistake. After 20 minutes of consuming I felt a strong anxious feeling across my chest and I struggled to breath. I ended up going to the hospital because I was so scared. The nurse and doctor told me I was just suffering from an anxiety attack and it was not an allergic reaction because I wasn’t swollen or blue in the face. I continued to stick with my wheat free diet after that and a few weeks after I consumed spring rolls .. Once again I had this overwealing feeling on anxiousness across the chest and struggled to breath for about half an hour. After putting two and two together I figured I must have this disease however due to my severe reaction there is no way in hell I will eat gluten for a month just to be diagnosed.
I think I might be gluten intollerant. But I do not had the runs like everyone seams to be posting. My stomach cramps up and feels like its going to burst at times. I am on a dairy free diet as I have been diagnosed with lactos intollerents when I was 8. I have also been been expreamly constipated and have been taking probiotics to help everything moving. But I too have had non stop colds and sinus infections for a couple years now. Does this sound like I could have gluten intollerance? I have been strugelling with these stomach pains for 2 years now. Searching for answers.
Chris,
I’ve been paleo for 3 weeks now while doing a challenge with my daughter. I’ve not had any real issues except bloating which I thought was normal for me. I ate pasta this weekend and my stomach started killing me. So I’m back paleo and will try reintroducing later. Does this mean I’m intolerant?
I’ve been gluten free for a year. the first day without gluten was a dramatic improvement. two weeks into it i accidentally ate a tiny amount and felt sick for 2 days; sort of like the flu but a stabbing pain and feeling like im very hungry. i immediately had worse period cramps. (it was already debilitating.)
I tried a cookie recently, and barely had a reaction to it. wondering if i have gluten senitivity.
I believe I was celiac since birth. I was born with a dairy allergy, had total glandular breakdown when I was 8 and needed growth Hormone shots. Had cortisol problems, adrenal shut down .. All sorts of probs and they could not figure out why I always had this distended stomach. They had dietitians talk to us an I ate the right foods, but it didn’t work . If they only would have tested for celiacs then. I have so many problems now.. My body is that of an old woman’s , I have 4 seperate types of arthritis, fibro, fatigue like mad, migraines and chronic constipation my whole life.
I stopped eating wheat when my sister almost died of celiac disease. It was a wake up call for us all. The first time we had ever heard of it. Back in 2000. As she healed and we learned I figured that my symptoms (some of them at least) might be from that. Stopped eating bread just for the heck of it, as a start I guess. Then I started getting worse. Stopped eating more gluten products and then went to go get tested. They did the intestinal test and said nope, you are fine. Wtf. So I went to another place and got the blood test, they asked if I was eating wheat? I’m not.. Not that crazy. Well your test will prob come out negative
Long story short .. Years later I am still hurting and having horrible migraines. Am I doing something wrong? I don’t eat oats because they do make me feel ill, but I am so careful to stay away from gluten.
I recently read somewhere that things like eggs, potatoes, coffee, etc can cause the same reaction In celiac bodies.. Is that true?
Sorry for going on like that..
Thank you for writing this article. I started having bad cramps about a year ago and I have another medical condition so take strong pain killers but the pain would stop me in my tracks even when I was taking the max dose after 3 months of going to the drs and them saying we will get to that but we need to discuss your eds, after 3 months and the pain kicked in whilst at the drs they told me to get on the bed and the dr said it wasn’t my stomach( connective tissue problem means it doesn’t empty properly) but more my gut, she left it at that!!! I realised that the food your body struggles with is wheat an dairy ( couldn’t give up dairy I’m a chocoholic) so I can of wheat not realising the extent of what contained wheat but after a few weeks I was more energised and happy( I’ve been anaemic some 15 years and the tablets make me worse) so I went back to the dr and she tested me even though I’d not eaten wheat in 2 months the test came back negative! I started to eat wheat again to be tested properly and it was horrible but again the test came back negative and I was told I was none celiac intolerant and to just not eat wheat… I’m back on wheat diet as I’m strapped for cash and I’ve noticed my mood swing are very bad and my period is late and I look a couple if months pregnant!!! I can’t wait to get pak so I can get the food so I can be me again!!
Hi i tested negative for CD when I developed symptoms at age 50, 7 years ago, but after much trial and error I came to my own conclusion that I have a gluten sensitivity. I have a delayed reaction of 1 to 8 hours then have a tummy ache, headache, nausea etc for at least 2-3 days. I make my own gluten free bread etc, but funnily enough I can eat certain types of pastry with no effect. The doctor says its I.B.S. and gluten is a trigger factor. I cannot for the life of me understand why my whole life I have been able to eat bread, cakes etc then when I turn 50, bam, that’s the end of it. and sometimes I still cheat, I’m only human after all, but of course I suffer after wards.
I would love to have a full panel of testing done. I have dermatitis herpetiformis and it isn’t just caused by gluten. Rice and corn are also culprits. Also rice and quinoa are extremely hard on my stomach and after just a small serving I feel awful a few hours later and then the next day I am painfully bloated. My daughter also has issues that only seem to get better without gluten. :/ has anyone had the testing done since this was published?
20 years ago I started getting allergies, 15 years ago chest pain and brain fog (turmeric oddly made it disappear, try it!), 12 years ago joint pain in my knees, 10 years chronic sinus problems and my eyes would swell up, 5 years ago teeth pain caused by sinus problems, horrible snoring, 2 years ago every joint in my body ached (worse in the morning), muscle pain and what feels like shin splints but in my forearms. At some points it was hard to lift my legs to get in the car. 6 months ago I got the “itchy ear” someone else talked about which I had no idea was caused by this. I was diagnosed with Hashimoto’s. I went gluten free for 2 months and it all disappeared. I went back on gluten and for 3 months and 15 pounds later was told I did not have celiac. Went off gluten again, felt better but months later started feeling achy in the morning again and figured out the dairy was doing it. I have not lost a pound but gained another 5 since I’ve gone gluten free. When I mistakenly eat even the slightest amount of wheat I feel fine for the rest of the day until I go to sleep. Sinus problems came back,eyes swell,itchy ear, snoring, and in the morning joint aches (feels like all of my joints are out of their socket). IOne time I kept dreaming that my throat was closing up and I’d wake up panicked. Could this be a wheat allergy? My doctor says it is just Hashimoto and nothing else. The symptoms last about 5 days after the accident. With dairy the symptoms only last one to two days. Also is anyone else ok after eating wheat until they go to sleep? I have read here and elsewhere that the dairy intolerance is temporary. How long is temporary?
PS I have acid reflux that seems to be getting worse and worse. Can this be relieved by avoiding grains and dairy?
Yes, I believe I am better when I cut out grains. Interesting that you include rice as an irritant – I had always thought rice a goof thing to eat. Millet upsets me, too. What about quinoa – would this be a good grain for me? Am I better to take brewer’s yeast for the B vitamins? How do I eat enough vit B complex if I’m avoiding grains? And, yes, since I stopped consuming dairy I am so much better.
Kind regards
Nicola
Hello Chris and readers,
Firstly, thank you for writing this article, I already know most of this information but when I suffer badly from allergies I always tend to do research to validate my terrible symptoms. The hardest thing for me to deal with is the psychological symptoms such as anxiety, depression, anger and maybe even slight schizophrenic symptoms.
I can handle a little bit of gluten/diary but on the weekend I binged on some chips/dip (which only occasionally happens when i’m drunk!) and only after eating the chips did I realise that the flavouring contained gluten/dairy. I’m not sure if anyone can relate but I feel like these flavourings that contain gluten/dairy have a much more profound effect on me than if I eat say a piece of bread or more ‘natural’ wheat products.
I’d like to describe how i’m feeling and see if anyone here can relate to this.
I ate the chips on Saturday night and it is now Wednesday. On Sunday I felt OKAY, a little bit of mind-fog and just slightly weak, I felt a little bit hung-over. On Monday it was very hard to wake up and get out of bed, I felt a complete lack of energy/weakness and a sick sort of despair inside my body. I couldn’t concentrate or focus on my work (luckily I work for myself) but as i’ve been through this many times I decided to go to the gym and push through the feelings of weakness. I was able to complete a workout at about 75% strength and this helped me regain some clarity temporarily. This continued for the following days and even now, four days later, it is still very hard to rise in the mornings and I still feel weak and mentally hazy albeit slightly better…the duration of my affectation is crippling, I remember thinking I was bipolar for a period of time because these states of weakness and depression would last so long.
Further, and perhaps the hardest thing to deal with is that my mind is so compromised when i’m in this state. I am so easily frustrated and angered (I tend to lose control and break things, this time i broke my iPad screen 🙁 ) and I feel a deep hopelessness and depression. Before I realised it was the gluten I was convinced that I suffered from depression and anxiety but when i’m not suffering from allergies everything is fine and my mind is sharp and clear. When i’m like this I observe a dull quality to my expression and my eyes, like no ones home. I am an intelligent guy, run my own business, deal with clients etc and there have been times when i’ve had to cancel meetings and go into ‘hiding’ to get over these spells. Stress is a huge factor in exasperating these symptoms, if i’m not stressed and eat gluten I can get over the symptoms faster.
At my worst moments of despair and hopelessness I had thought about (not considered) suicide and when I was at my worst, before defining the cause, I would have physical symptoms such as red, itchy eyes, rashes on my face and body and pale skin. Seeing a naturopath, nutritionist, my own research and watching my diet over the years has helped immensely…if you feel the above and haven’t tried eliminating wheat/dairy from your diet I strongly suggest you give it a shot. Better to do that than think you’re going insane or that you’re broken!
Hope this helps someone 🙂
Mark
I had a gluten intolerance test done, but am now confused about what the results really mean for me. What does it mean when you only have 1 out of 4 categories flagged, namely Deamidated Gliadin IgG??? I’ll post it…
Test name Result Reference range/Units
Total IgA 2.05 Adult 0.69-3.82 g/L
Transglutaminase IgA AB 0.3 <10 U/mL
Deamindated Gliadin IgA 5.8 <10 U/mL
Deamindated Gliadin IgG **10** <10 U/mL
I'm not exactly perfectly wheat free, but I'd say I was on a "wheat reduced" diet leading up to the test… lol Could that have messed with my results? I feel good eating rye bread, have a disaster of a time with buckwheat pancakes or fancy pasta. Any insight is greatly appreciative.
Thanks!
I would like to know if gluten sensitivity can cause thinning hair over a long period of time. Not auto immune loss but generalised diffuse hair thinning in women.
Thanks for reading
Ella
I have self-diagnosed DH. Biopsies and blood tests were negative for LgA antibodies, but I had been gluten free for at least 1 week when the biopsy was done so I don’t know if the test can be considered valid. Regardless, based off of 10 months of personal experience, I consider myself to have DH and assume I have NCGS. Eliminating gluten over the last 10 months made my rash go away almost completely. Every now and then I find a new ‘threat’ and i have flare-ups, like with my CoverGirl lip gloss (now only use Burt’s Bees) and my little cups of French Vanilla creamer. Another flare-up just the other day is making me think I might not be able to handle corn 🙁
My question is this: Even though I don’t have the traditional gastro-intestinal symptoms of CD, could damage still be occurring? Could intestinal damage have occurred over the years of loving gluten? I was a total bagel-holic and ate them daily for years. I don’t want to have to go back to a dr, but I feel like I should know if there is something else that needs to be done other than eliminating gluten and corn. Thoughts?
I see extreme gluten sensitivity (along with intolerance to a whole bunch of other things) as a symptom of something else deeper going on. This needs to be investigated instead of struggling to live your life in a bubble, avoiding even the handshake of someone who just ate a piece of bread or a cookie. Perhaps liver issues, toxicity, etc. Yes, avoiding gluten for a while is mandatory but that alone is not enough. We have to get to the root of things.
I’ve been gluten free for a number of years with some cheat times and during those I get some nasty flair-ups. I was tested for Celiac and the test was negative; I’ve tested for wheat allergy and the test is negative however my elimination says otherwise as does when I was tested for the wheat alone at the allergist, my face got hot and prickly, face got tight, I got anxiety,… to me that says positive and yet the test said negative. I’m considering strongly trying the Cyrex Test. During various allergy tests and well as elimination tests, I’m pretty much allergic to all grains and legumes – so all seeds. Occasionally I can tolerate small amounts of certain grains, i.e. oats, quinoa, amaranth, and rice, however a little over on those and I begin to react as well. I found it interesting that my intolerance/allergies seemed to come about shortly after we moved to a grain production region from the city. Within 2 months of the move, everything I at went through me within 20 minutes and the extremity of the symptoms just escalated from there. One of the worst weight gains was 35 lbs. in one week after I went off fluid pills (I was gaining 10 lbs. of fluid per day while on the pills). I haven’t gone completely Paleo (dairy doesn’t affect me) and I do consume some grains periodically however given the inflammation issues and weight issue just won’t leave me, I’m going to have to bite the bullet again and just get rid of them. I think the Cryex test just might be the icing on the cake with respect to evidence.
One of the biggest issues I have with going off it all however is the fact that it makes it virtually impossible for me to do part of my job – travel. I used to do a lot of travel as a consultant and not eating seeds has put that on hold. Trying to get foods that don’t contain seeds, especially when travelling, is virtually impossible – any suggestions? When you mention to restaurants they have no idea what to make nor how to bill for it when you make suggestions.
I’m also allergic to most of the nightshade family and onions as well – so add that to the mix.
I´ve been eating a non gluten diet no sugars some dairy because I was diagnosed with hashimotos, antibodies Reading of 111.1 at the end of june, which is now falling significficantly and which is now, as of just two days ago under 92. I´m also supporting my inmune system taking selinum, vit d, digestive enzymes l glutamen. Be encouraged readers this diet really does work to help symptoms.