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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I have been on a gluten free diet now for two and a half months. I did also eliminate dairy. I am a type 1 diabetic with Hashimoto’s and asthma and a number of other conditions that are also linked with celiac – while I have had not had a full range of tests done, the ones I have had have come back negative.
Things did improve on the diet until 2 months into the diet and then things went wrong. I have not totally eliminated grains and tried some gluten free products that seemed to work to my detriment and now even a diet of only meat and vegetables is still resulting in trouble. My insulin sensitivity is bouncing all over the place and I never know how much insulin I need from day to day. My adrenal insufficiency and hypoglycaemic unawareness which came right the second month on this diet is again a problem.
I have lost too much weight now and do not know what to do about it as I am still losing weight. How can I get help to eat a diet totally free of all the things I seem to react it (and it seems to be a very large amount of things that can set me off) and yet a diet that also provides enough calories and sufficient vitamins and minerals – this month I was showing signs of magnesium deficiency again and I have always suspected I have low zinc both of which seemed better a month back.
I am desperate now as I need my symptoms gone, but I also need to be able to eat and all the time I am having to remove more and more foods from my diet until I feel like I can eat nothing at all.
My asthma did stop on the diet and yet came back quite severely last night after drinking only black rooibos tea with honey flavouring. Do I have to just drink water now?
You may want to try at Atkins type of diet, where your carbohydrates from vegetables are also counted — although I am only prediabetic, I find I feel much better in general when I also watch starchy vegetables, highly sweet fruits, etc. You may also want to avoid soy — I have a worse response to soy products than I do to gluten. Soy is in many, many food items and is in many gluten free processed foods.
I have cut soy out of my diet entirely as I reacted very badly to it when I first started the gluten free diet. Is soy lecithin also soy though as that may have crept in at times?
Because I am a type 1 diabetic I have to count all carbohydrates – including those from any vegetables (starchy or non starchy) as I inject insulin depending on how many carbs I am eating (carbs in nuts get counted too) However because of the insulin I have to treat any hypoglycaemia with high GI carbohydrates – usually 100% fruit juice (anything from 50-200ml at a time depending on how low my sugars are) – I cannot get away from this no matter how hard I try as my sugars on this diet do tend to run too low very often even when on very little insulin.
I think I will have to go on a whole foods diet – no processed anything and no grains – but will I have to include fruit then – I need to stop the weight loss now and am not sure how to get in enough calories to do this on such a strict diet. Also what about potatoes – they do have a tendency to push my sugars up over quite extended periods of time, but otherwise I do not react to them and they are starches – I need some starch in my diet if I am to keep my weight from dropping more I think…
I would consider adding good fats, such as avocado, olive oil, some butter, etc, back to your diet. When you cut your carbs and don’t add fat for your body to burn, you will end up burning muscle and fat stores. I’ve switched to whole milk and as much avocado as I want, and have seen an overall improvement in well being and in my blood sugars. It eliminates the craving for carbs by keeping my insulin lower.
PS Yes, soy lecithin is a soy protein.
Thanks for all your help Becky. It has been very much appreciated. I’ve got lousy Drs and I feel like they are no use at all sometimes.
Got to say that feeling better is not ‘nothing’ and I for one, after all these years, am enjoying feeling better.
Go through Chris’ post above carefully. He recommends an elimination diet. I clicked on the Cyrex Labs link, and apparently you do need to eat gluten before being tested. See their “FAQ” link. They don’t say for how long, but they do say that “A gluten-free diet can cause false negative results.”
Also note that the more studies being done on gluten and grains are being done, the more info is emerging that other grains contain interactive substances that also cause problems. The current issue of Scientific American has one. It even talks about a study showing that the majority of people tested showed no gluten sensitivity, despite the fact that they FELT BETTER WHEN THEY AVOIDED GRAINS. The doc commenting on the study said it was too bad they had given up grains FOR NOTHING. I don’t think feeling better is nothing, and I suspect you don’t either.
To substantiate, I had Hashimotos antibodies in my blood tests for years until I went grain-free. Over about six months, the antibodies disappeared entirely, verified by blood tests. My doctor said it was probably eliminating wheat that made that happen. So, if you are NOT eating wheat, your body may stop making antibodies against the gluten. Therefore they would not show up in a blood test.
For those whose doctors have used ‘allergy’ and ‘celiac’ in the same context, its not. Both are inflammatory conditions but present themselves differently.
In celiac disease, the celia are negatively affected (besides getting the remainder of the associated issues); in an allergy, it affects the entire system depending on to what degree the allergy is and how the allergy presents itself. You get the antibodies if you’re allergic. Some will get digestive upset, some will get changes in blood pressure, some will get edema (localized or whole body),… It’s very personal.
Is that comment for me Kathleen because if it is I’m not quite sure what to do with it. How does your comment help me?
She is just clarifying the meaning of allergy and celiac. I believe that for a gluten sensitivity test, you have to KEEP eating gluten for some time before and right up to the test. I had Hashimoto’s thyroiditis (an autoimmune condition) for years until I stopped eating wheat. The Hashimoto’s antibodies (which show in a blood test) disappeared entirely. Yet I have never been celiac or had any conditions related to it. Menopause is perhaps just coincidental with arriving problems; often it is simply years of eating a food or foods that our body has difficulty handling: at some point some bodily function begins to struggle enough that we feel it. If the reaction is strong enough, it comes when we are younger, maybe? At any rate, spending loads of cash on testing isn’t necessarily the answer. Eliminating certain foods, keeping close track of what you do and how you feel, and adding foods back in and seeing what happens … you will get your answer.
Thanks Becky. It’s a bit of a tough one with all the different kinds of reactions to grains and gluten.
Does anyone know FOR SURE if I should have been eating gluten when I had my celiac blood test? If I go back to my Dr I need to know I’m right when I say I should have been doing this or she’ll eat me for breakfast
Can anyone tell me if by being on a gluten free diet whether or not that I might get a false reading from my celiac test? I’ve been using a gluten free diet for several years now and there has been a quite considerable improvement but I wanted the test to make a proper diagnosis. My test came back negative but I’m pretty sure I’m allergic to gluten and dairy. For years Drs have been I have been tagging me with diagnoses like IBS, chronic fatigue, ME and FMS but when I was a kid they just said I was sickly. They even removed my appendix and then told my Mum it wasn’t infected!
When my celiac test came back negative and my Dr told me it proved I wasn’t allergic to gluten OR WHEAT I thought that’s doesn’t sound right and I thought “Time for ME to start checking this out.” Glad I did.
Menopause made things so much worse – anyone else found that?
Hi,
My now 2 year old and I had been on a grain free, dairy free diet for 10 month. Her skin much improved, but she now has a way to loose stool and is lacking energy. So we need to go on some kind of diet again.
Wheat free is not helping enough, maybe not at all.
My symptoms, mostly the dermatitis, did not improve. I wish we could just test for the problem. Any suggestions?
Thank you.
In my case, I have not had super bad reactions but to a lesser extent they have mirrored what others are saying here and have gone on for 20 or 30 years. As much as possible for the last 6 months, I have removed gluten and definitely feel better. Unanswered questions:
1) How long should it take to heal a leaky gut?
2) Why is there no discussion about how Candida may play into these issues?
Yes, there are some other foods that mimic the gliadin molecule, such as coffee. I think Chris addressed this in his original series on gluten. It’s easy to research.
Mexican food often contains corn (tamale dough) and for me, corn turns out to be a big irritant. To heal up from stomach/bowel irritating foods, I make “Knox blox” out of Great Lakes gelatin. It soothes. When the body responds with pain and irritation, it’s nice to give the digestion a rest with broths and soothing liquids like water or homemade almond milk (not the boxed kind). You will find what soothes you.
There are products at the health food store that are designed to protect gluten-sensitive people from gluten. I’ve heard that some people take it before entering unknown food territory. But to me, keeping supplements and such to a minimum makes sense from several standpoints, not the least of which is cost. Also, EVERYTHING you eat too much of, or EVERY DAY, and EVERYTHING you take as a supplement, especially over time, WILL cause something else. Even ketogenic diets, while wonderful for blood sugar and weight loss, have other effects on the body that will turn up later, given long enough on the ketogenic diet. Balance and good sense and sticking with real (not processed) food is the key. And be aware of EVERYTHING that seems to irritate your body. And don’t eat that thing, or eat it with other soothing foods, and don’t eat it every day, or very much of it. I’m convinced, like the Jaminets say, that “the dose makes the poison.”
For nearly 30s I have had a chronic cough that doctors could not diagnose despite man $K of diagnostic tests. Prilosec didn’t help even though they claimed I had reflux. After two months off wheat, my cough is nearly gone. Also, fewer hairs fall out of my head when I shower. I found this article after some white rice triggered coughing and stomach pains Now I’m a believer–albeit a sad one. Thanks,
Oh and, are there any enzymes we can take that help when some culprit sneaks into a friend’s lovely dinner or a restaurant meal?
I cut out gluten for 3 weeks. I went in holidays last weekend and ate bread, rice, Chinese food, and even Mexican tamales! I feel terrible today. My stomach is distended and hurts terrible. During my 3 weeks without gluten I felt great! I have always suffered from ibs and stomach issues. I guess I can quite say I am intolerant to gluten right.
My foods today have been gf but my stomach is still killing me. Any suggestions?
It takes several days for me to feel better when I just get a slight bit of gluten from something at a restaurant. I think everyone is different but I have read that gluten stays in your system for awhile.
Are there other foods that can create an autoimmune reaction/condition similar to gliadin?
I have had Hashimoto’s for the past 10 years and was only recently diagnosed with gluten sensitivity last month. While I have previously eaten primal for the past 6 months, I just went full blown paleo last week. While I would like to add some foods back in, I don’t want to add back anything in that will aggravate autoimmune….. Any suggestions?
I have had chronic migraines for 15-20 years plus gastrointestinal issues for the last 10 and finally went Gluten free my headaches reduced by 75% and alot of my stomach issues reduced as well. I do test negative for Celiac but have numerous other food allergies, I firmly believe there is a huge connection, I wish someone would figure out the link and how to determine it.
I am positive I am allergic to gluten o r react to it in some way shape or form but the doctors say I’m not allergic. About 7 years ago I started to get stomache pain after every time I ate food. It lasted for months and we couldn’t figure out what it was. After months of writing down what I was eating nothing was making sense. I could eat fruit and I would develop cramps.
After 4 months or so I stopped eating large amounts of dairy because we figured that was making my stomache pain. After about a year of not having very many reactions I started to develop headaches.
These headaches started happening about once every month or so, and after a few months it was a couple times a week and then every day. 6 months after my headaches started it became migraines slowly. Instead of headaches every day, a few times a week they progressed into migraines. 2 years after the stomache pain I was having migraines at a frequency of every day. No pain killers even touched it. I missed school all the time. My grades were declining and light was excruciatingly painful. My parents and I were worried I might need glasses or something else was wrong. I spent every moment I could in a dark room with no lights on holding my head and wishing the pain would go away.
We finally went to the doctor and asked him if it was possible for me to have allergies to something. He of course laughed at me and declared that one couldn’t have migraines from food allergies.
He did do some blood tests to satisfy us checking my white blood cell count. When the results came back he was astonished. He said that I was having an allergic reaction higher than normal and that I must be allergic to something.
He never followed up or anything, so my family decided to completely eliminate gluten and dairy. Within 2 weeks I was no longer having migraines. We just decided that I was allergic and that’s that.
I also diagnosed myself with keratosis pilaris because of the rash like bumps on my arms, face, buttocks, and legs. They disappear slightly I haven’t consumed gluten in the last couple months.
I also have a butterfly shaped red rash on my cheeks that flares up every time I consume dairy, whether it is I drop of butter or a tablespoon of cream cheese.
After five years of self diagnosis my reactions are only getting worse and I want to confirm my allergies. Now when I consume gluten I get bloated and have loose stool or even diarrhea for a couple days after. I get migraines and feel pukey. Dairy my face still reacts and I get massive stomache cramps.
I am also sure I am allergic to sugar, mostly in the form of sugar beets, not cane sugar. I get stomache cramps from consuming sugar, Especially in a concentrated form (pop).
I have developed hives several times that have covered my entire body for weeks and we are sure it was from red food dye.
Now I tried to go see an allergy specialist and get tested a year ago, and after some tests, I was told that I am not allergic to wheat and dairy after they did some skin tests… correct me if I’m wrong, that doesnt mean anything.
So suffice to say I’m frustrated. I can’t have certain alcohols, even if they are distilled and I certainly can’t have gluten dairy or sugar without reacting in some way. I am sick of being told by people that since it doesn’t show up on my allergy tests, therefore I am not allergic. Is there any way to confirm my suspicions?
Thank you! Your article was very informative and I appreciate it.
Your article was touching for me. You really explained the primitive methods for testing for Celiac Disease, and how someone can be suffering from different classifications of Gluten Intolerance. People don’t understand it can go undetected; neither do the physicians I have dealt with… Here is my story:
I was tested back in late 2012 and I had been on a Gluten free diet for a few weeks. Nothing came up on my blood work due to having very little if no Gluten present in my system at the time of the test. I went on another year suffering from every symptoms I have seen linked to Celiac Disease/Gluten Intolerance. I have major digestive issues, IBS-C, motility/slow digestion, severe hemorrhoids due to all the visits to the bathroom, chronic migraines, high/normal thyroid results, painful menses, Premenstrual Dysphonic Disorder, depression, anxiety, peripheral neuropathy, insomnia, major joint pain in my knees, hypoglycemia, weak enamel/dental issues, interstitial cystitis, eczema/DH, my hair thinning (I had to buy hair extensions), severe inflammation, MAJOR weight gain (about 65 pounds), and the list goes on. I have also been extremely ill as a baby and child with what doctors suspected were Inflammatory Bowel Disease, but I was never tested for Celiac etc. I was always sick. I catch colds/viruses all the time; my immune system is extremely weak.
The doctors could not figure out what was wrong with me, I am going to be medically bankrupt due to all the ER bills I racked up when I was in a time period without insurance. Then when I had medical insurance it was through Tricare for Young Adults, I couldn’t get appointments I would have to wait about 6 weeks, and have multiple appointments until I would be authorized referral(s) to see specialists. I didn’t get any help. Another year went by. I was jobless due to chronic health issues and flare-up days where I couldn’t get out of bed or away from the bathroom.
My relationship has been torn apart. I had been with a wonderful man who I instantly knew he was the one I was going to spend the rest of my life with and have children. Five months into our relationship I fell severely ill and went on a roller coaster of horrors and frustration. I was sick all the time and I gained so much weight I went from 135 pounds at 5’7 to nearly 200 pounds. I thought I was dying or I had some rare form of cancer. I did not have any idea what was wrong with me.
After I turned 26 recently I lost the Tricare plan and I was without health insurance again. I lost my job as I stated earlier. I was completely without a means to buy health insurance and get proper healthcare. Healthcare should be a basic human right, and we live in one of the only industrialized societies without a national healthcare system.
My entire family is from Ireland; I only have four family members in the United States. Over there healthcare costs at the most $100 a month, and health issues are resolved quickly. I only just found out I am eligible for dual citizenship by birthright. All the money I spent in the US getting nowhere could have bought me a ticket and time over there with access to a better health system.
In Ireland there is a higher presence of Celiac Disease and Gluten intolerance. I have extended family linked to the first full-blown Gluten-Free restaurant in the world.
Anyway, I have been without insurance for almost four months now. I was deathly ill over Christmas this past year I racked up another ER bill. I decided to do intensive research. I realized with all the symptoms/chronic ailments and the failure of my doctors to properly test for Celiac Disease/Gluten Intolerance etc. that all the dots were connected. It was finally right in front of me; I knew I had some form of Celiac Disease/Gluten Intolerance.
I immediately cut it out of my diet and created a Gluten free regimen, I stopped drinking and dining out as well… Within two and a half weeks I lost 17 pounds and all the inflammation started to go down. My stomach wasn’t swollen all the time anymore. All my chronic ailments and symptoms have disappeared. I had this extreme brain fog before I couldn’t focus on writing or school, and now I can think clearly again. All the neurological and psychological issues I had have started to fade away. I am starting to feel like a healthy person again.
I am still with the man I love, but the damage has been done to our relationship after having to endure strain and hardships. He has seen me jobless, overweight, extremely ill, financially wrecked, and just at my total worst all due to the damage of living with an undetected illness. He still loves me, but he doesn’t discuss the future anymore. I understand, and I hope things keep progressing for the better so we can move forward from all of this hardship someday.
My significant other took me out recently to a great restaurant that was not Gluten-educated. They still managed to have a Gluten free menu. It was a joke, and I researched the items on it later on and there was a great deal of cross-contamination. They used all sorts of gourmet spices and butters. Right as we finished dinner I ran to the bathroom, I was gone for 15 minutes. I was instantly ill. I felt dizziness, I got extremely bloated, I had terrible diarehhea, and I vomited. I went back to the table and I needed to go home. It took about a day or so to completely recover from my reaction.
I can’t go out anywhere around here now, and my significant other is frustrated with me. It really does break my heart. He sees me getting better living a life without any Gluten food or products, but he still doesn’t understand the illness. He doesn’t understand how physically ill Gluten makes me. Now that I have all the answers, I don’t know how to make him or my family understand how serious it is that I cannot have Gluten in my diet or life.
I am so hurt by the lack of education in restaurants and people on how ill Gluten can make someone. It is not a joke. And there is very little awareness toward Celiac Disease/Gluten Intolerance. People don’t realize the damage that can be done to a person if they keep going through life and not treating Celiac Disease/Gluten Intolerance. It can make them severely ill and debilitated. People don’t realize the concept of Celiac Disease as an autoimmune disease. I’ve spent my whole life ill, always catching whatever was going around, and have constant flare-ups and reactions to Gluten that I couldn’t understand.
I don’t know what to do at this point, but to stay on a Gluten free road and document everything. When I have health insurance again I would definitely like to get the new comprehensive lad tests, Cyrex Laboratories that were mentioned to have my Gluten Intolerance and possible Celiac Disease officially documented. The only thing I can do with my significant other and family is attempt to educate them. Perhaps with time, everyone will grow less frustrated with my lack of spontaneity in dining out and living a Gluten-Free lifestyle. I am grateful for the support of my significant other and family thus far, but now I have to take everything a step further in getting their support to understand Celiac Disease/Gluten Intolerance. I am new to it, and it is a struggle to have to educate everyone. I feel like their patience is running thin with everything I have been forced to go through. I feel so alone, I feel so down, but I am hopeful.
I am blessed to feel hopeful again, and I am lucky to have this issue as opposed to others. Celiac Disease/Gluten Intolerance is a controllable disease. It will be a hard life, but there are so many other diseases and medical conditions in this world that are uncontrollable. I have a future, and people that find they have Celiac Disease/Gluten Intolerance need to realize they are not the only ones. They are likely not to know many people with the issue, but we are all out here going through the same struggles. All we can do is become educated; take care of ourselves, and patiently attempt to educate society on something that a few decades ago was never even mentioned.
We are blessed to live in this time, where there is minimal Celiac Disease/Gluten Intolerance awareness, but it is there. It will grow stronger with time…
Thank you, Mr.Kresser, for a phenomenal article you have helped to better illustrate what so many people cannot understand…
I’ve been strictly GF since 2008. Still, my overall health reflects the problem of inflammation (persistant eczema, maldigestion leading to periods of fartiness).
I’m very strict with gluten and dairy avoidance, rarely eat out (I keep it to sushi if I go to a restaurant), so I’m looking for ideas on what else to do to reduce eczema and maldigestion -after- already eliminating wheat and dairy for years?
These are the additional things I’ve tried recently: 3 months ago no more caisein, no more soy cheese, dropped all legumes and grains including rice. Feels like a good change.
I did the full GAPS protocol in summer 2013, I still make bone broth once a month.
Currently reading Perfect Health Diet aka ‘PHD’ (thanks for mentioning it, Chris Kresser). When PHD recommended including 1 serving of potatoes and white rice daily, I tried it last week and got insta-eczema that hasn’t cleared in the past 6 days.
What kind of a freak am I? Am I the only one who is totally gluten intolerant and can’t even do potatoes or 1 serving of rice for starch?
Wouldn’t a gluten challenge work better if gluten was taken out of the diet for 4 months since the half life of the antibodies can last that long?
this just in . . . http://www.theguardian.com/science/2014/jan/14/simpler-diagnosis-coeliac-disease-new-test
Simpler diagnosis of coeliac disease:
Australian scientists devise new test
Blood test will do away with the need for people to eat gluten for weeks before a diagnosis can be made, says lead researcher
Great post, Chris. It’s so interesting to read all the different reactions people have so thanks everyone for posting. It’s through reading other peoples’ comments on various websites that led me to try an elimination diet and discover that grains have been causing me numerous health problems all my life. I’m 32 years old now.
I started with eliminating just the grains associated with CD, but then I found I was still reacting to the so called gluten-free grains like corn so I eliminated all grains seven months ago and I’m happy to say I have my life back!!
What I was told by doctors was tonsilitis wasn’t at all, but one of the many reactions I have to being glutened (having a very swollen uvula and glands). Constantly peeling lips, painful bloating making me appear six months pregnant, swinging between constipation and diarrhea, anxiety, depression, dark scary warped dreams every single night without fail, paranoia, black thoughts (I’d often think of killing myself – not suicidal as such), brain fog and exhaustion to the point I can only describe as feeling like my soul had been sucked out of my body.. it was no ordinary tired! I felt rough all of the time and almost came to accept that I’d never feel like I would have any energy to do anything more than to go to work and feed myself. I had little energy reserves as I constantly suffered from adrenal fatigue and spent most weekends sleeping. Sometimes I wouldn’t leave the house as I couldn’t bring myself to face the outside world. Most of my symptoms I put down to stress until I went on an elimination diet.
The worst reaction I had was the day after my most recent birthday when in addition to the above, I woke up the next day with wheezing and a DH rash which had only appeared a handful of times in my life. The day of my birthday I ate bite sized pieces of gluten loaded treats throughout the day. My reaction the next day was so severe that I went on a quest to discover the cause as I finally sussed I was having a reaction to something I’d eaten. All of the usual symptoms had been amped up and exacerbated.
I’m on a very strict diet now as I also have oral allergy syndrome. I can’t eat sweet potato (causes IBS symptoms), caffeine, chocolate, legumes, most nuts and raw fruit. I avoid eating chicken and pork as these are normally soley grain fed and I also avoid eggs. I have to be very careful with my vitamin and mineral supplements as so many contain corn starch etc. Finding alcoholic beverages is a challenge so I tend to stick to sparking wine or champagne and straight sambuca on ice! Grain vodka makes me very ill as I discovered earlier in the year and I’ve recently found out that commercial ciders are a no no as these contain syrups and starches derived from grains. This all makes me sound like I’m a big drinker but I’m not!
I did embark on a three month gut healing plan where I also eliminated dairy. I reintroduced this and am fine and only eat a little anyway. I know that from what I’ve read many people who can’t tolerate grains can also have problems with dairy.
Good luck everyone on your gluten free / grain free journeys – it’s a challenging yet rewarding one 🙂
I’m sure I have it. I can feel it and also tested off the charts when I had my food allergy panel done.
Any time I eat it I start getting skin inflammation.
I attempted the 90 day gluten free challenge. However, I just found out that several of my daily medications contain wheat. So, that explains why I feel a little better from eliminating almost all the gluten but I am still taking some in every day.
I had no idea that their was gluten hidden in my antibiotics and my daily medicine. Every time they switch manufacturers I have to call and find out if they are gluten free.