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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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Great article. Love the details about how wheat can cause problems for non-celiacs. However, I question whether someone who does a 30 day challenge is safe to eat wheat long term. A person may suffer from problems that do not resolve in 30 or 60 days, or the exposure may lead to future problems. It’s true you advise to keep wheat to a minimum, but many (non-paleo) who read that will see no problem with continuing to eat something that may ultimately cause them great harm. Plus, will they do another challenge in the future if they develop health problems? Keep up the good work — I developed my view point by following you and others over the past year or so.
I’m confused about my Celiac testing results. I told my doctor I was feeling better when I was eating Paleo, but I don’t feel gluten gave me horrible symptoms–just sluggish and mild GI issues. He couldn’t explain my terribly low iron, b12 and vitamin D, so he tested me for Celiac’s.
My gliadin antibody came back as high at 40 units (anything <20 is negative), and tissue transglutaminase antibody at 7 (anything below 4 is negative), Immunoglobulin normal. He said to avoid gluten. Should I consider myself as having Celiac's and not indulge in the occasional gluten treat? I'm back to eating paleo and if I have an occasional cheat, I just make sure it's gluten free.
for a while I thought gluten the problem, but since i can eat moderate amounts of pasta, or very good quality bread without feeling too bad (constpation being main complaint), I came to conclusion actually its the yeast in bread that is the culprit. Yet I seem to be ok with beer and marmite, both surely very yeasty, so am I on the right track? Is it the combination of yeast/gluten in modern fast rise baking that is adding up to constpation? altogether much improved since started taking kefir, any other suggestions gratefully received!
Yes, I somehow do agree Bina.. That when you throw yeast into the mix it does exacerbate the problem even further ..I would even go as far to say about 3-5 fold in my case. How it works I just don’t know as I am not a scientist but the bottom line is the body never lies!
I have Hashimoto and I have been gluten free for almost three weeks. I feel fantastic. My thyroids are no longer hot and for the first time in two years, they do not hurt. I have more energy, moods have stabilized and my sleep patterns are better than ever.
I have a daughter who suffers from Sensory Processing Disorder (SPD) and it is interesting that she also suffers from food allergies (like me). She is not just intolerant but allergic. For me, it was an easy decision to eliminate certain food since her reaction was obvious, sudden and caused a lot of misery (vomiting). In doing these eliminations, we saw improvement in her lesser symptoms (rash, runny nose) and in her SPD. I see a lot of families in the autism community struggle with such restrictions. It saddens me that our society has such preconceived notions about health that most are skeptical about diet changes. My daughter’s food allergies? Dairy and Wheat.
The very first user comment I ever saw regarding Primal/Paleo and autism was from a mother with a 6-year old son who “came out of autism 3 weeks into a grain-free diet”. (My nephew has Asperger’s Syndrome). I don’t think she meant that he was completely healed – not sure that is even an option. From what I have read (not a lot) not all response and some respond better than others. But this should tell the “experts” something, right?
I’m a 43 yr old female with Aspergers. My 15 yr old Son has Aspergers too. Within a few days of going Dairy and Gluten free the years of digestive problems ended. The opiate effect they had on me was astonishing. Now I get no headaches, acne, chronic fatigue, my mental clarity is at an all time high and my periods have gone from verging on haemorraging to normal again.
I don’t care what the so called experts say, Dairy and Gluten exacerbate ASD. I’ve proved it.
I’m 26 years old, and cut out gluten and dairy at the same time back right before I turned 19. I lost 55lbs within 4 months, and at the time there really wasnt any ‘gluten free’ alternatives, so bread, etc was not replaced. I suppose I put myself on a paloe-ish lifestyle before I could even give it a name to associate it with anything. (I wont call it diet, as I’ve been eating this way since, and over the years modified it to include tons of healthy fats, etc with educating myself more on whole foods).
I’ve also had PCOS since age 12, and this gluten and diary free way changed my symptoms completely. I find however, my biggest reason for avoiding specifically all gluten containing foods, besides the PCOS symptoms/weight gain, is having to deal with the almost addiction like quality these processed ‘foods’ deliver. They are not satisfying and give me no satiation. My brain was constantly tricked, and I would eat more and more, gain weight and with those empty calories I was probably malnourished despite my weight. I used to feel powerless over food. I feel since eating whole foods, real foods, my brain recognizes them and I no longer have cravings for things that are not whole/real foods. I hope more and more people will educate themselves on the power of real foods, and find real health, not just weight loss. Its opened a whole new perspective!
Thanks for posting your story. Gives me encouragement that eventually I can resist the addictive properties of all those garbage foods!
Kim- Wishing you the best! Hang in there 🙂
Hi Sarah,
Your story just resonated with me. I’m 21 and currently doing an elimination diet. Within the first week I’d lost 5 pounds, and my weight continues to decrease steadily (I’m about 20lb above “healthy” and 30 above “ideal”) except when I reintroduce something I’m sensitive to. I also have been diagnosed with PCOS for about 5 years. The first thing I noticed was that whatever I cut out was definitely harming my body – for the past 2 months I’ve had regular periods (TMI?!). I’m thrilled.
Addiction, especially to wheat-containing foods, is something that I also struggled with. Even now I catch myself looking longingly at cookies in the supermarket!
You can call it diet; diet just means “what you eat”. So your diet is healthy. It really annoys me when people just cut out all nutrients from their diet for the sake of losing weight.. it’s not sustainable and who knows how much harm they could be doing to their bodies!
I’m really pleased to hear that you no longer crave processed foods. I find myself really fancying sweet potato all the time! Keep up your good work and thanks for sharing such an encouraging part of yourself.
I also have Hashimto’s, low thyroid, low vitamin D and contact dermatitis. After reading all of the replies I have to contact my Dr and be tested. I currently have the itchy skin problems, headaches and foggy brain feeling but do not have the stomach problems that a lot of people seem to have but I have my whole life struggled to loose weight. I can watch every calorie and exercise and never loose a pound. My question is where do I start?
You should get tested for Candida. Your symptoms sounds very similar to mine. Once I got rid of the Candida these symptoms went away.
I’ve come to the conclusion that the dairy “intolerance” is collateral damage from wheat intolerance. Not sure what the mechanism is, but I’ve seen people I know (starting with my daughter) have their dairy intolerance resolve after going gluten-free. “Lactose intolerance” is very highly correlated with wheat consumption and celiac, and doesn’t seem to exist at all in populations that eat only small or no amounts of wheat.
So it may be worth re-introducing dairy after wheat intolerance symptoms abate.
I’ve seen this too, and it’s one of the reasons that I recommend people reintroduce dairy after the 30-day challenge (if they want).
Thanks for this great article, Chris. I am lactose intolerant and have tried to avoid dairy as far as possible. I never thought I was gluten intolerant, but having read your article and understanding that there can be different shades, I am very keen to go on a 30 day gluten/dairy challenge. I have quite a sensitive respiratory system, having been asthmatic, and also frequently waking up with a lot of mucus/ runny nose that can persist throughout the day sometimes. My skin is also relatively sensitive and can get itchy bumps out of nowhere sometimes. Let’s see whether a gluten free diet can change this. I foresee that it could be hard to avoid gluten totally though, as they end up as hidden ingredients for many types of food.
While I definitely agree with your article, I have mixed theories about GI. After doing a lot of reading, I wonder if, in some cases, we get intestinal distress and since gluten (in all its parts) is harder to digest, if perhaps we become intolerant for that reason? Many people with intestinal issues are intolerant to multiple foods-so perhaps gluten is just one of the ‘usual suspects’. *like FODMAPS -for those in the correct circles.
Also, many people with Celiacs have lactose intolerance-but more than a few of my friends have been GF (Gluten Free) and actually were no longer intolerant to lactose once things healed up in there. 🙂
I don’t tolerate grains or carbs well at all. A good elimination diet can save LOADS of time, stress, AND money. Great recommendation!
In 2010, I started eating low carb for weight loss. At that time, I sort of offhandedly noticed that I no longer had diarrhea. I know it sounds crazy, but I’d gotten accustomed over a period of a year or two, to urgent diarrhea several times every morning. It wasn’t painful (no cramping or sharp pains), and I just put up with it. I’d never But when I went low carb, I had to face the fact that I had been dealing with very abnormal bowel movements for quite a while, and something about eating low carb caused it to normalize. I suspected that it had to do with my much reduced grain (and therefore gluten) consumption.
I gradually quit eating low carb, and gradually, the diarrhea (and heartburn, and weight) returned.
Finally, a few months ago, I dropped grains (except for rice), and sugar again (I’m not eating low carb, since I’m still eating other starchy foods, and fruit). Again, the bowel movements returned to normal.
Also, I have low thryroid, low vitamin D, low iron, and a son who is Type 1 diabetic (and is also homozygous for the DQ2 allele). All of this points to the fact that I really shouldn’t be eating gluten, I think.
My wife was diagnosed with celiac disease in 2007. She is 5’7 and was down to 95lbs. She was slowly dying of malnutrition. Her GI doctor said he’d never seen numbers so off the charts as he saw with her. We’ve been essentially a GF household since. Neither me nor our oldest daughter have any ill effects from gluten, but my youngest does suffer from occasional digestive discomfort. She continues to test negative for CD, but we’re always aware of the possibilities that either of them can become gluten intollerant any any given time. My wife, thanks to the advances of gluten free fad dieting, has been able to find more and more things she can eat, which is great. We don’t have to avoid restaurants as much as we used to, however there is always a chance of cross-contamination, which also makes her sick for 3 days.
As a mandatory GF household, it is infuriating when we see or hear people who do the GF fad diet. Believe me, my wife would love to be able to eat anything, anywhere, at any time. There are so many people who claim to be intollerant to gluten but have never been tested for the disease. I think those people should attempt to live a day in the life of someone who truely suffers (cramps, headaches, irritability, fatigue, loose stool, etc) when they get gluten in their systems and see how easy they have it. Yes, there are different levels of intollerance, but I think some people are hypochondriacs and there really isn’t anything wrong with them.
I have sympathy for your wife. I have not gone through the same type pain and misery that she has experienced from eating gluten. I am fully aware that I am not as careful as she has to be regarding cross contamination. I am fully aware that she suffers in a way that I never have.
But, I’m not sure how her extreme suffering somehow negates the validity of my experience. I feel better when I don’t eat gluten. Period. That is good enough for me.
I claim to be gluten intolerant to some degree, and yet I have never been tested for Celiac. I just hate diarrhea more than I enjoy eating gluten. Is that so bad?
You first are grateful for the fad dieters for increasing the number of foods your wife now has access to, then one paragraph later you are infuriated by those on that ‘fad diet’.
I agree with the other commenter that your wife’s suffering, however awful, doesn’t invalidate my experience because my symptoms are different. I tested negative for celiac (but positive for intolerance through an independent lab blood test), but suffered for years with a variety of symptoms from ‘IBS’ (chronic diarrhea and constipation, excruciating stomach cramps), headaches, joint pain, nausea, periodic vomiting. I eliminated gluten and nearly all those symptoms disappeared within about 6 weeks. No, I don’t get an auto-immune reaction that causes malabsorption, but I’m not a hypochondriac either.
Don’t dismiss other’s experiences because they might not be as severe as your own.
I understand what your wife is going through, i was an army ranger and as such was in exceptional physical shape but over the last ten years have been diagnosed with lactose intolerence,ibs,fibromyalgia and divorticulitos and have gone from 240 lbs and well muscled to 150 lbs as of today :/. I am just looking into this but it all fits any info on gaining healthy weight would be appreciated
I have all the symptoms of celiac but i dont have celiac. what i have is a messed up system from illness! its hard to be gluten free but whats even harder is gluten free soy free corn free dairy free msg free tomato free, pork free (new one) because your system is so messed up from illness and immune system problems! Some of those are allergies and some sensitivities but they all make me ill in some way and it sucks!!!
Hi Chris, great article.
I have not had any testing, but about 11 months ago (during my pregnancy) I developed chronic “itchy” ears, and a horrible, itchy, bumpy, cracked rash all over my hands, and eventually it spread to my lower legs. These symptoms seemed to come out of the blue. But about a month ago, I decided to cut wheat/gluten out of my diet 100% (I don’t eat dairy). And WALA, everything was gone within a week! I was normal again.
If I even get a tiny amount of wheat in my system, my hands and ears start to get itchy/rashy all over again.
Does this sound like an allergy? an intolerance? or an autoimmune reaction like CD? It is so strange that this seemed to come out of the blue.
Meg- to me that sounds like possible Dermatitis Herpetiformis, which is a gluten intolerance related to celiac that manifests itself as a rash.
Thanks Alicia, this will be a great starting point, I am definitely going to research Dermatitis Herpetiformis tonight.
I was recently diagnosed with Hashimoto’s Disease and have had the Cyrex Testing done. I have gluten, dairy, grain and quinoa sensitivities. Pretty much everything Cyrex tests for, I had a reaction to. I cut all of those foods out of my diet 8 weeks ago and have since lost 24 pounds and am starting to feel better. I have some other issues to smooth out so there hasn’t been an immediate change in symptoms and I don’t feel 100% better yet. I had no idea that I had these sensitivities since I didn’t have the typical symptoms that those with a gluten intolerance have. I’m grateful for the Hashimoto’s diagnosis if for no other reason than to find out that I was eating a diet that was causing such internal damage.
Leslie,
Thanks for sharing your story. I also have Hashimoto’s. Just wondering, do you know which particular Cyrex test checks for all the gluten and dairy sensitivities? I’m going to ask my endocrinologist about ordering me one of their test panels. Thanks!
Chris,
Are you familiar with Enterolab’s stool tests.
Yes. I prefer Cyrex’s panels, but I sometimes use Eneterolab’s cheek swab for the genetic variants.
I’ve been gluten free for eight years but I’m self diagnosed. I’d love to know for certain, however, I’m not willing to consume gluten again for fear the bad symptoms I was having might return. I opted to have the Enterolab cheek swab done and the test showed that I have two copies of gene that “predisposes to gluten sensitivity”, but I “don’t have the main genes predisposing to celiac sprue.” The lab also stated that the gene test they use is not cleared or approved by the FDA. I’m glad you’re addressing the complex nature of all the proteins involved, rather than the typical response that gluten or gliadin is the only culprit. I recently read a beer blog where the writer was worried that the new process of creating gluten free barley beers using the brewer’s Clarex enzyme might not get rid of all the other potentially harmful proteins in the final products (they don’t seem to bother me.” Keep up your good work and thanks.
I went gluten free a few years ago. I quickly realized oats were also a problem. After a while, corn also became a problem. I’ve been paleo/primal now for about a year…I don’t eat any grains at all anymore except occasional white rice. I eat very little dairy, but it doesn’t seem to bother me when I do have it. I have also found that I can no longer tolerate apples, pears, or grapes, and chocolate just this week is possibly giving me problems. The fruit and chocolate seem to cause the same stomach pains and bloating that grains always do…but they are not grains. I’m a little confused about this, and am wondering if anyone else has had similar problems? I would like to understand why I can’t eat these foods, and if there are other similar foods I should avoid, too (so I don’t get MORE stomach aches!).
Check out info on the FODMAP diet. There are many people (myself included) who have the same issues you’ve identified and the FODMAP diet has changed my life pretty dramatically. Any time I “cheat” or go off the diet, I end up miserable, bloated and very regretful. I never realized by severe GERD was related to the FODMAP foods and I was taking omeprazole for years. My gastroenterologist is the one that told me about it and I thought she was probably crazy but lo and behold, she was right.
I agree FODMAP sounds right on. You have reactions from the foods to avoid on the list. Check it out
I just found out that that there are at least 19 foods that cross react with gluten. they call is cross reactivity. Coffee, chocolate, oats are on that list. If you google “19 foods that cross react with gluten” you will get several sites you can read up on the topic. I just went to a functional medicine doctor who is testing me thru the Cybrex lab to see if I have an issue with these foods.
meant Cyrex labs
Apples (and maybe pears and grapes) are coated with a soy wax and of course chocolate contains soy lecithin and dairy (some brands of chocolate also contain gluten). If you are sensitive to soy this might be why you can not eat these foods, try organic foods they shouldn’t have any soy wax on them. Good luck.
I am one of those tested for CD and it was negative, so I spent many more years in pain and poor digestion. Then went Primal and improved 90%. But still had issues. I recently had a comprehensive stool test that showed a high number of IgA antibodies for gluten. I would have an occasional piece of bread, but now realize I am one of those that can not afford the “cheats” if I truly want to heal.
The paleo/primal community insists that removing grains (esp. those not properly prepared) is a necessary component to a healthy lifestyle. In your estimation, is this true for *all* people (or even most)? Will those without any negative health symptoms benefit from cutting grains out of their diet?
I’m a little more relaxed about this than most. I don’t think there’s strong evidence that properly prepared grains contributes to disease in the context of an overall nutrient-dense diet. We know that relying on grains as a staple at the exclusion of more nutrient-dense foods is problematic, and we know that many people with gut issues and inflammatory conditions don’t tolerate grains well. We also know that grains have anti-nutrients like phytate that decrease mineral absorption and protein assimilation. That said, if you are fundamentally healthy, you’ve eliminated grains from your diet for a period of time, and then you add properly prepared grains back into your diet in moderation with no adverse effects, I don’t really see a problem with that. They should never be a staple and they shouldn’t displace more nutrient-dense foods. That’s my take—hope it helps.
Chris,
What if you’ve gone 30-60 days gluten free, then added it back in and felt nothing? That’s me, but I still stay almost gluten free, even though I feel no bad effects from gluten. No cramps, bloating, digestive issues, spacey feelings the next day… nothing.
There seem to be many diseases that are said to have been caused by long term gluten exposure (I assume that it was actually the long term leaky gut), and don’t want to look back one day and wish I hadn’t valued hamburger buns so much, so I skip them.
Is this an overreaction?
Thanks for the great work!
Roland
If you’ve done this and didn’t experience a reaction, you’re probably not gluten intolerant. There are three possible reactions to gluten: CD, NCGS and tolerance. Seems you’re in the tolerance category.
I do recommend avoidance of gluten even when you’re tolerant as a precaution, but in your case eating it on occasion as part of an “80/20 rule” will probably not hurt.
Would love to hear more on this from an expert. :). I too eliminated gluten (and all grains) for a long period of time. Now, if I have them in small amounts i’m ok, but if I go overboard, I start to get symptoms again. I suppose my tolerance is pretty low – but at least I don’t SEEM to have to worry about cross-contamination type sensitivity.
*again, i’m mostly paleo but hey, i’m not perfect. 🙂
I wonder if it was/is a gluten allergy? I’ve had severe reactions to gluten for years – even a crumb would send me into a downward spiral with everything from rashes to vomit-inducing-migraines to horrible sinus infections. Doctors thought it was Celiac but all my test results came back negative. I stayed completely gluten/dairy free for two years, had some gluten (accidentally) just recently, and no reaction. None. My naturopath suggested that the restorative therapy I’ve been doing on my gut through healthy eating and supplements has healed my intolerance to gluten. Which kind of makes sense, since you can reverse many food allergies simply by avoiding them and giving your gut time to heal. I will always avoid gluten, but at least now I don’t have to stress so much over the cross-contamination 🙂
Hi Haley. Could you tell me what you eat, cos my guts are driving me up the wall. I feel I have no choice but to eat wheat and gluten foods on a daily basis cos I can’t eat much else. Fruits fail ! Dairy fail ! Spicy foods fail ! Nuts fail ! I wonder how I survive. This is crazy.
Hi Serben
I have been experimenting with my diet for a long time now. I went Gluten free in July 2013 and after 2-3 weeks I felt so great. I still feel like my best self. I gained clarity and energy and just feel overall happier. The references I used for this change are as follows:
Gut and Psychology Syndrome. Dr Natastha Campbell-Mcbride
An fantastic book and reference, I think this could be a great starting point for you.
Norishing Traditions. The book that Challenges Politically Correct Nutrition and diet Dictocrats, Sally Fallon
and http://www.mercola.com
I hope these help.
Hi Serhen,
I was like you about a month ago. Guts driving me up the wall. I have a peanut/tree nut allergy, lactose intolerance, oral allergy syndrome (fruits) and I was going crazy–seemed like I couldn’t eat anything. Going gluten free has been the best thing for me–I feel great and I’m not running to the bathroom in pain. For protein, I eat meat and take a daily supplement. It’s hard at first because a lot of things are manufactured in places with nuts and it can be disheartening. Being a broke college student, it’s hard to afford places like Whole Foods but when I “can” I try to stock up on items I can freeze and have at a later time. Hope this kind of helps
I thought like you did because I was diagnosed allergic to soy, corn, all legumes, beef, tuna, salmon, pork, lamb, turkey, cod and other whitefish, apples, bananas, pineapple, peaches, avocado, squash, cucumbers, bell peppers, chili peppers, tomatoes. melons, nuts, etc. It got so all I could eat was white rice and chicken. I was suffering from Vitamin d and B deficiencies and was really miserable in my diet.
I kept reading that Leaky gut could cause the vitamin deficiencies and in turn could be caused by Gluten, so I went gluten free. Now, 9 months later, I can eat almost all of the above except soy and cashews. I eat lentils, beef, corn, sushi, salmon, all those fruits, tomatoes, etc again.
My new gastroenterologist said that the leaky gut was letting all the undigested proteins from those various foods, which are normally too big to penetrate the intestinal wall but because of gluten damage were leaking into my blood stream and setting up the immune response. Now that my intestinal lining is healing, the proteins don’t cross the barrier and only amino acids get through as Mother Nature designed, and now the other “allergies” have all resolved themselves. And it is not as hard as it looks, because after being gluten free for a few months I accidentally ate some and had a whale of a stomach ache for two days, so now I look at cookies, cake, bread, etc, as poison and have no desire to cheat.
Great story! I would have put you on bone broth (made with no vegetables, just bones, water, salt and wine or cider vinegar and boiled for hours) and only when all symptoms had gone I would have added in one veg, or one meat or one fish at a time watching for reactions. It works too, but does take some time. I have solved Crohn’s, ulcerative coitis, and various other things in this way. No one should ever eat any grains, by the way. They are alien to this species (homo sapiens) so no wonder we all get sick on them. Even back at the dawn of agriculture the sickness, malformations and species deterioration were clearly happening. Why did we stick with these dratted ‘foods’? We got hooked to the gluteo-morphines. We have been addicts ever since, and fallen prey to a host of infectious and parasitic diseases due to our stupid persistence in eating the wrong food. Would you feed meat to a koala bear? No, it would get ill. Or put a cheetah on a vegan diet? No, it would fall sick and die. Each species has an evolutionarily diet, and ours is meat, fish, above ground veg, eggs, and fruits. What’s not to like?!
I actually did do the bone broth thing and also did a lot of supplements for gut healing (my doctor is an integrative medicine specialist.) And I did add the foods slowly and in very small quantities to test for reaction before increasing. Also did a few months of green, mostly spinach, yogurt, and berry smoothies with a probiotic. Now I try to eat mostly organic, farmers market veggies and grass fed meats and free range eggs (and I do mean cage free free range.) So happy to feel better!
I know this is super late, but maybe you need to take an extra supplement to aid in your digestion for example a combination of digestive enzymes and hydrochloric acid. It’s said to work well if that’s your problem. Good luck!
Eat vegetables.
Yes, of course I do. Those were always in the mix though could not handle legumes or any nightshades. Now most are back in the diet too.
Hi Haley!
I experience similar problems. No medical aid save for Dr Google who lives on the internet! 😉 ..My symptoms with sugar, wheat, beans barley & oats which I too believe are gluten contaminated and in all likely hood seem to be processed together with all the above on the same factory plants. I am in South Africa.
My symptoms are sinus driven vomit migraines just like yours, which can last up to 3 days. Every time I pig out on anything gluten contaminated esp when I bake with sugar and flour, same terrible problem occurs all over again, & I so love my baking!
Due to the above, I have been on grandpa headache powders ever since childhood, not knowing what was behind my problem.. and think in part it has damaged my stomach lining whereby any gluten contaminated food I eat causes a flare up of stomach ulcer/s. For that I juice aloe into a green smoothie and fill my stomach up before going to bed. I know it has healed when I run lemon juice past it. I can feel it. Aloe also seems to help with my sinus problem. I find a good remedy is a little apple cider vinegar or fresh lemon juice with a bit of salt and bicarbonate of soda added. With an ear bud swirl all around deep in nose, throw head back and sniff it in. I then get rid of all that gunk by blowing my nose seems to clear my sinus which the my trigger for my vomit migraines.. Repeated a few times daily together with drinking lots of water, seems to help flush it out. I also drink hot lemon water with bicarb added 1st thing on awakening on empty stomach. With the recurring ulcers if I pig out or go on a gluten binge they return. I once vomited blood. But since I know know what the problem is, I am a lot more careful now, and do not allow it to get that far any longer. I have it more under control now & I am perfectly fine as long as I avoid it.
A friend of mine who is ann allergist and immunologist on the Harvard medical faculty has a theory that those who display gluten intolerance may be able to remove it from their diet for a time and then re-integrate. The theory is that like some other food intolerances, you can suffer from being exposed to a certain thing too much, but after a time away from it, eat it in moderation.
Your immunologist friend has not grasped that the reason we humans react to cereal grains is that our defence systems rightly try to get rid of them from our bodies. No one should eat grains, they have always done us harm. Have you read Loren Cordain’s work, or Jared Diamond’s. Since all grains offer very poor nutrient provision, and nothing that we cannot get in better form in proper non-grain foods, why on earth would anyone sully themselves by eating such things? Look at beta-carotene: from any veg source it has to be converted through multi-stage system to become the real deal, vitamin A. No baby can make the conversion, few women can, and most of the elderly cannot. Even those who can cannot unless sufficient fat is there, so all those vegetarians and vegans are getting Vit A deficiency, and if they are pregnant, God help their children, as they won’t have enough to go round. Vit A is now known to be essential for the outer body (not the organs) to be symmetrical, so anyone with one foot bigger than the other, or a wonky smile, or one breast bigger than the other can be pretty sure their mum did not eat enough animal form of Vit A (i.e. liver) when she was pregnant, or before she was pregnant. And yet my government (UK) and probably its the same in the US specifically advises pregnant women to avoid eating liver. How ridiculous is that?!
In ranting mood, hope it doesn’t offend.
My name is bailey. I have always had a rash on my elbows since back in the day. I thought nothing of it. I am now fifteen and I had a terrible break out. Scabies had been running about and my family had thought I had scabies. I went to the doctors and they treated me for scabies, nothing. Treated me for an infection on the skin, it cleared up my elbows but it did not help what was on my legs. My rash has cleared up immensely in the past two weeks but I had a biopsy done. They had taken some of the rash off of my elbow. I got a call back, two weeks later. They said that I was gluten intolerant. But after I had ate gluten, I did not use the rest room. I use the the restroom normally and do not feel bloated. I thought it was a gluten intolerance but reading this, I am just thoroughly confused.
50 shades of gluten intolerance. gluten intolerance can cause the bloating, gas, stomach upset, headaches, rashes, scabies, hurting joints, brain fog….. the list is endless. Some people might only experience one symptom; some might experience several. You might think the only thing you are experiencing is the skin rash but then going gluten free several weeks later you might think to yourself “my mind is feeling clearer or I haven’t had gas that past few days”. Sometimes we are just go used to the way we feel that we don’t think about all the issues until we no longer experience them. With the scabies I would also go diary free for a period of time as many people with scabies find they do better with no dairy and so many people find that if they are gluten intolerant they are also intolerant to dairy.
I also forgot to mention. Celiac is the one that will send you running to the rest room after eating gluten. If your just sensitive you might be regular or you might experience some loose stools or you could also be constipated.
My daughter had the same elbow rash when she was young. Bumpy, sometimes raw from scratching but often whiteish raised bumps. She used a steroid cream which would clear it for a while. Its Dermatitis Herpetiformis, and can be cleared with a gluten free diet. Now her brother (19) is getting the same thing. He eats a lot of gluten. I get eczema from gluten and my husband has another skin condition which are open sores on his shins. We’ve found a gluten connection with our skin issues and I’m suspecting our kids have just inherited our intolerance. Regardless of the actual diagnosis, I encourage anyone I meet with skin issues to eliminate gluten.
If you had a biopsy of itchy skin and they told you it was due to gluten, you don’t just have a “gluten intolerance” you have dermatitis herpetiformis, which is a type of celiac disease presentation. Despite the fact that you don’t seem to have gastrointestinal symptoms, you WILL be harming your body by eating gluten. If you have celiac and continue to eat gluten, you are setting yourself up for various gastrointestinal cancers, etc. You need to stay strictly gluten free the rest of your life, unfortunately. However, it is a lot easier these days! You can get lots of help here though.
Hi
I have been suffering from chronic heartburn and acid reflux for 6 months. My blood test for coeliac was negative and gall bladder is fine. I went gluten free 2 weeks ago and saw a 50% improvement in my symptoms almost straight away. I have now started with all day reflux again. Do you have any suggestions what to do next? Could it be lactose too. Thanks.x
Hi Chris.I live in the UK,where doctors are very presumptuous n dismissive,so I normally research a lot myself(being a pharmacy dispenser helps)and visit my doctors in Greece.I have been recently diagnosed as gluten intolerant(functional bowel disorder was the term also used) after 1 1/2 yr of excruciatingly painful stomach issues,extreme n sudden fatigue&lowered blood pressure_which my GP still refuses to believe are connected.
I have also been a Hashimoto’s patient since 2004 with almost constant hair loss(quite bad when I stress)that has subsided with Minoxidil&silica formulas.
However,I have noticed my hair became a lot stronger&my scalp stopped itching n hurting when I went completely gluten-free.
How can I discover what really triggers my hair loss/itchy skin/fatigue,since doctors in this country refuse to listen n help?Thanks,Faye
Hi Roland, just wanted to say congrats to you for trying out a gluten free diet and finding out that gluten doesn’t affect you negatively. A few months ago I finally decided to give a gluten free diet a try. I basically spent 30 YEARS with a stomach ache. I was used to the constant irritation though so not having my stomach bother me at least a little bit wasnt something I had ever considered possible. I also spent my whole life believing that I was mostly intolerant to lactose . After trying a gluten free diet (though wee bits of gluten definitely still found their way into my body via cross contamination or simple mistakes on my part) I found that eating goods containing lactose no longer bother me. Without gluten purposely being a part of my diet, my energy levels went up and I have been all around a happier person… but I still had to do the real test and reintroduce gluten to my diet for at least one meal to see how it would affect me, if at all. Immediately after eating a few bites of food containing gluten, there were no changes to how I felt. However, after a bit more than an hour had passed since consuming gluten again, my stomach hurt extremely bad, diarrhea returned, I felt weighed down. I realize now, after several “tests” I have given myself to revalidate that I am, in fact, sensitive to gluten (“tests” being another way of saying that my will power was lacking on several occasions and only through the return of the awful physical effects that I experience after consuming gluten have I finally accepted that gluten can’t be a part of my diet anymore because the satisfaction i get from consuming my favorite foods that contain gluten cannot ever make the physical ailments worth dealing with. I think maintaining a gluten free diet for myself is a necessity, and my culinary laziness has actually benefited me nicely since now I eat a ton more uncooked fruits and vegetables which means my body is getting a ton more nutritional value from my food. However, based on research I have done regarding gluten free diets, if you are not sensitive or intolerant to gluten, there is no reason why should adhere to a gluten free diet as it can lead to nutritional deficiencies as well as weight gain because a lot of the foods that are available as gluten free are much more dense and way higher in calorie content. After your first gluten free challenge you would be very much aware if your digestive system couldn’t deal with it. But since you seem not to benefit from cutting gluten out of your diet, you should keep gluten inIit’s healthy forms in your diet (whole wheat, whole grains THAT DO NOT LIST ANYTHING referring to “enriched flour” in the ingredients list. I think since gluten is found on most ingredient lists and is an ingredient found in tons of products we consume daily to get our bodies’ carbohydrates needs met, what people like yourself need to do is simply to try replacing simple carbs like white spaghetti noodles made out of “enriched flour”, among other not so good for you ingredients, with complex carbs like Brown rice instead. I consider people like you that do not have negative reactions to gluten to be really lucky because you don’t end up having to boycott foods that you love just because you’re avoiding the physical aftermath that gluten causes, but the ailments caused from gluten sensitivity simply are not worth enduring for somebody such as myself. So once again, Congrats. Just be careful with your eating habits if you still choose to maintain a gluten free lifestyle since it is actually not a recommended diet choice for people that do not have gluten sensitivity or intolerance. It has become a total “fad diet” with a huge misconception that it’s healthier and can help you lose weight when in reality, a lot of people not only GAIN weight after going gluten free, but also have to take new supplements to make up for new nutritional deficiencies they end up having.
Roland, I have NO symptoms whatsoever from eating gluten… except unexplained early osteoporosis, and nutrient deficiencies even though I eat a nutrient dense diet and take quality supplements.
I have stopped gluten completely for months at a time, then eat it again and notice nothing. Over the years, three sets of tests with three different practitioners (an integrative doctor, a functional doctor and a Certified Nutritionist) have all told me to avoid gluten.
I WISH I had uncomfortable symptoms of my gluten intolerance so I would stop cheating on my GF diet! It only takes a small amount of gluten in the diet to cause long term health damage.
I was diagnosed as celiac back in 1997, although the testing methods were a bit faulty: I was suffering from weight loss, digestive distress, and a blister-like rash on my hands that my then-doctor thought was classic celiac. I immediately quit gluten and felt 90% better, then proceeded to test as negative for celiac (blood test and biopsy) – which I now know was due to the fact that I’d been GF for at least 6 weeks prior to testing! So little was known back then about gluten intolerance.
Fast forward to last year, when all of a sudden my symptoms started coming back with a vengeance. I already ate very little dairy, as I had been thought to be lactose intolerant my whole life – but I cut it out completely and again, 90% better.
In addition to eliminating gluten and casein, I’ve found that I can’t tolerate corn, soy, oats, and most nuts and seeds (macadamias are an exception). Rice isn’t a problem; in fact, I feel best when I eat small amounts of it every few days.
hi Janeray – I have the same symptoms as you including gluten intolerance, but my form of the disease is called Dermatitis Herpetiformis (DH). Itchy, blistery rash caused by gluten-rich foods. What I found is that foods containing lots of iodine (kelp, sea greens, seafood) and oats cause a sever reaction in me – almost worse than the gluten reaction.
There is an established link between gluten and iodine intolerance. Hope this is helpful!
Ever since I was pregnant (over 3 years ago) I’ve had this rashive no idea if its the same as yours but drs keep telling me its in my head or its seasonal allergies. I’m in France so its hard to convey my message to them. I’ve stopped gluten and limited as much dairy. Goat seems fine. Its been several days and I have not had any new bumps or itchiness.
Good for you Jessica. I was living in France and I moved all my family to the US because of the ‘mentality’ of french doctors/specialists/dentists…. very condescending and these people have no clue about alternative medicine! no respect as well for people who think out of the box! they thought I was a lunatic when i told them I was giving raw milk to my children. good luck!
Hi Mary,
Thank you so much for your comments! I too get an itchy, blistery rash on my face from gluten rich foods, and I didn’t know why I was having a problem with my face again when I’ve been so good avoiding gluten. But I recently starting taking kelp tablets as a supplement! Thanks to you, I know it has got to be the kelp. Thank you so much.
high iodine can increase your TPO enzyme (that creates T4). and that can encourage and immune response if you have hashimotos.
I am intolerant to gluten, soy, corn, msg, and oats. Im allergic to tomatoes and dairy. Watermelon, bananas, and citrus cause migraines as well. Yea lyme disease, babesia, and lupus are the culprits for me! I know they caused gut damage and lowered immune system. im working on getting better and building my immune system.
I’m sure I’m gluten intolerant. Whenever I eat wheat, my nose closes up, I develop mucus, and my knees (I have arthritis in both) start to swell and ache. Sometimes that happens when I eat regular foods, but mostly with grains.
For years I suffered with chronic sinisitus, or so said the doctors. I had numerous alergy tests which showed nothing. I tried every sinus medicine and every nasal spray know to man. My ENT could not find anything wrong and suggested I might need surgery. I was desperate, I could not sleep, I could not breath and the acid indigestion was intolerable. My friend suggested I may be wheat intolerant and suggested trying just protein and vegetables for a while. I did so and within two weeks of eliminating anything with gluten in it, my symptoms had disappeared. It has been two months and accidentally ate something with gluten in it and sure enough withing in hours could not breath again. I would suggest try going gluten free. The problem is you have to research gluten because it is in almost everything, including chocolates and soups. Good luck.
Hi Terry, You are describing my husbands symptoms exactly! He has had chronic mucus build up in his nose since he was a kid. He has to blow his nose every 10mns or so, non stop all day. He also had chronic acidity and indigestion. Doctors said exactly the same thing, he tried every nose spray under the sun, doctors said he had overactive mucus glands and maybe an operation would solve it. Finally, I put him on an elimination diet and within a week of stopping gluten, his symptoms disappeared 100%. He had lived with this for 30+ years and no one ever thought gluten could be the problem!
I feel like I am reading about myself. Dealing with some anger about how sucky this whole thing is. Had some french fries from a fast food restaraunt and forgot about cross contamination in the fryer. Man!!!! LOL, Living and lots of learning to do. All my best everyone!
You probably have a gluten allergy. Intolerance is a digestive issue, where as allergies create swelling, rashes, etc. (ex. symptoms of a peanut or bee allergy vs. lactose intolerance)