Over the last year or so, we’ve seen a glut of stories in the popular media suggesting that non-celiac gluten sensitivity (i.e. people that react to gluten but do not have celiac disease) is a myth:
- Science Proves Gluten Sensitivity Isn’t Real, People Are Just Whiners
- The Science Is In — Why Gluten Sensitivity Is Probably Fake
- Gluten Intolerance May Be Completely Fake: Study
- Non-Celiac Gluten Sensitivity May Not Exist
- Gluten Intolerance May Not Exist
Even late-night TV host Jimmy Kimmel weighed in with a segment that got a lot of attention in both popular and social media.
Just after these stories were published, I wrote an article (“Is Gluten Sensitivity Real?”) showing how the authors grossly misinterpreted and misrepresented the research they claimed to be reviewing.
You can read my article to get the details, but here’s the takeaway: the study those stories were based on in no way disproved the existence of non-celiac gluten sensitivity (NCGS), nor did it overturn the large body of evidence that links NCGS to a variety of health problems ranging from type 1 diabetes, to allergies, to schizophrenia, to autism spectrum disorders. (1, 2, 3, 4)
Research shows gluten intolerance is real—and “science journalists” are clueless.
What struck me about those stories—aside from how embarrassing they are as examples of so-called “science journalism”—is how eager the general public seems to be to prove that gluten intolerance is an imaginary or fake condition. I’m not exactly sure why this is. Maybe it’s because gluten-containing foods and beverages like bread and beer have played such a central role in our culture for thousands of years. Or perhaps people simply distrust anything they perceive to be inauthentic or “faddish”.
What the Science Really Says about Gluten Intolerance
While I can relate to an aversion to fads (don’t get me started on Hipsters), and the gluten-free diet could in some ways be described as a fad, the consensus in the scientific literature is that non-celiac gluten sensitivity is a bona-fide condition with numerous—and potentially serious—manifestations. According to a recent review paper called “Non-Celiac Gluten Sensitivity: The New Frontier of Gluten Related Disorders”:
…a rapidly increasing number of papers have been published by many independent groups, confirming that GS [non-celiac gluten sensitivity] should be included in the spectrum of gluten-related disorders. (5)
Observational studies have linked gluten intolerance with a shockingly diverse range of symptoms and conditions, including:
- Irritable bowel syndrome (6)
- Fibromyalgia (7)
- Dermatitis and other skin conditions (8)
- Multiple sclerosis (9)
- Peripheral neuropathy, myopathy, and other neurological disorders (10)
- Schizophrenia (11)
- Depression (12)
- Attention deficit hyperactivity disorder (13)
- Ataxia (14)
- Type 1 diabetes (15)
- Autism spectrum disorders (16)
- Ménière disease (17)
- Endometriosis (18)
- Insulin resistance and inflammation (19)
I could go on, but I think you get the point. If the authors of the “gluten intolerance is fake” articles had spent even five minutes examining the research, they would have seen numerous papers supporting the existence of non-celiac gluten sensitivity.
And they aren’t just observational studies; some of them are randomized clinical trials (RCTs), which are considered to be the gold standard of medical evidence. In fact, just last month, a new RCT was published that validated NCGS as a legitimate condition. (20) This was a double-blind, placebo-controlled trial, and it had the additional benefit of a crossover design (which I’ll describe below).
The researchers enrolled 61 participants without celiac disease or wheat allergy, but with self-identified gluten intolerance. Subjects were then randomly assigned to two groups; one was given a capsule with 4.4 grams per day of gluten (roughly the amount in two slices of white bread), and the other was given a placebo capsule containing only rice starch. After one week of a gluten-free diet, participants then “crossed over” into the other group (those that received the gluten capsules during the first round got rice starch, and vice versa). Crossover studies are advantageous because each crossover participant serves as his or her own control, which reduces the likelihood of confounding variables influencing the results.
As you can see, despite the rash and uninformed claims you may have seen in the popular media, gluten intolerance is indeed a real condition and not just a figment of the imagination. (Of course, if you happen to be one of the people that suffers from gluten intolerance, you didn’t need me—or any study—to tell you that!)
Like what you’re reading? Get my free newsletter, recipes, eBooks, product recommendations, and more!
Why Gluten Intolerance Is Likely More Common Than Currently Estimated
Estimates for the prevalence of NCGS vary widely, ranging from 0.5% on the low end to 13% or higher on the high end. (21) However, there are three reasons why I believe NCGS is much more common than currently estimated:
- Current commercially-available tests (with one or two notable exceptions) are extremely limited and miss many people with gluten intolerance. Most conventional tests for gluten intolerance only screen for antibodies to a specific fraction of the gluten protein, alpha-gliadin. 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. I reviewed this subject in more detail in my previous article, 50 Shades of Gluten Intolerance.
- Even the best serological (blood) testing is not 100 percent accurate. An elimination/provocation challenge, where gluten is removed from the diet for 60–90 days, and then reintroduced, is still the gold standard for diagnosing gluten intolerance. However, many physicians are unaware of this and thus do not suggest it to their patients.
- Many physicians and patients only suspect—and therefore test for—gluten intolerance when digestive symptoms are present. However, both gluten intolerance and celiac disease can present without any gut symptoms, and only extra-intestinal symptoms like ataxia, schizophrenia, dermatitis, or neuropathy. In fact, the majority of patients with neurological manifestations of gluten sensitivity have no gastrointestinal symptoms! (22) In the case of celiac disease, which has been better studied than NCGS so far, about 30 percent of newly diagnosed patients do not have gut symptoms, and for every new case that is diagnosed, there are 6.4 cases that are undiagnosed—the majority of which are atypical or “silent” forms without gut symptoms. (23, 24)
When you put all of this together, it is almost certain that NCGS is far more prevalent than the current estimates suggest it is.
Is Removing Gluten from Your Diet Dangerous?
The most glaring problem with this argument is the simple fact that humans have only been consuming gluten for the past 11,000 years or so, which represents a tiny fraction of our evolutionary history. That’s about 367 generations, compared to the 66,000 generations we evolved in an environment without gluten or cereal grains.
The second problem with this argument is that even whole grains are not very nutrient dense. In fact, when compared with other foods like organ meats, fish, meats, vegetables, and fruits, whole grains are at the bottom of the list. (25) As you’d suspect, refined grains (like flour) are even lower. This is significant because 85 percent of the grain consumed in the US is in the highly refined form, and refined flour accounts for approximately 20 percent of calories consumed by the average American. (26)
Finally, studies that have assessed the nutritional quality of gluten-free diets have, not surprisingly, found that they are not lacking in any necessary nutrient. (27) If anything, people on a gluten-free diet are more likely to increase their intake of essential nutrients, especially if they replace breads and other flour products with whole foods (rather than with gluten-free flour alternatives).
Final Thoughts
In my book, The Paleo Cure (previously published as Your Personal Paleo Code), I argued that there are three categories of response to gluten:
- Tolerance
- Non-celiac gluten sensitivity, aka “gluten intolerance”
- Celiac disease
I don’t believe that gluten is responsible for all chronic illness in all people, as some have seemed to suggest. But I think the research clearly supports the existence non-celiac gluten sensitivity, and if anything, it is significantly under-diagnosed.
One of my favorite alternate titles I considered for this article was “Gluten Intolerance Is Not Fake, But Science Journalists Are”. It was disheartening to see so many sensational and poorly researched news stories making the claim that gluten intolerance is not a legitimate condition. Not only were those authors wrong, they were irresponsible and failed to do even the most basic background research about the subject they were writing about. This should be yet another reminder to take what you read in the popular health media with a large grain of salt.
Better supplementation. Fewer supplements.
Close the nutrient gap to feel and perform your best.
A daily stack of supplements designed to meet your most critical needs.
I haven’t read this article yet but it is so frustrating when people say to me that having to eat gluten free is a fad that I am following. Ten years ago I was so sick I had to leave my job because I couldn’t explain to my bosses why I was in the bathroom so much and so long. I had to figure out the problem on my own – my gastroenterologist just gave me some useless pills and thankfully I avoided a colonoscopy. It wasn’t until I tried a macrobiotic diet that I discovered that when I did not eat gluten, I was okay, and when I did, I got very sick. I realized it wasn’t the macrobiotic diet, it was not eating gluten that helped. I have now lived ten years mostly free of severe IBS symptoms as long as I don’t eat gluten unknowingly, which has happened several times thanks to unaware servers and friends.
Marilyn Perhaps you can help my understanding of the macrobiotic diet. A friend’s mom was on it to heal her cancer but when I looked it up, it was described as 50% grains..
Can you please clear that up for me?
Thanks. Lisa
ps I too have had to go on medical leave. I feel your pain.
I believe that most people who have a reaction to grains, specifically wheat, barley and rye, possibly have a huge micro-biota imbalance.
Our ancestors were hunters and gathers and they ate off the land. Much of the food and liquid they consumed was brimming with mega doses of environmental bacteria.
Now most of those bacteria actually died as they passed through the harsh gastric system (gastric barrier), but some didn’t. These specialized strains also developed an uncanny ability to survive in the outside environment and then pass through the acidic gastric system to end up thriving in the intestines – these became nature’s true probiotics.
With thousands of years of exposure to these specialized strains of commensal organisms, humans have actually come to require the presence of these strains for proper, healthy function of many of our biological systems. In fact research has identified that they can ultimately provide the following benefits.
* Immune modulation to reduce allergies and asthma.
* Immune stimulation of peripheral T-lymphocytes and B-lymphocytes to fight colds, flus and infections.
* Decrease in frequency of urinary tract infections.
* Reduction in side effects related to antibiotic therapy.
* Effective treatment for small intestinal bacterial overgrowth (SIBO).
* Diminished duration of diarrhea, specifically in children 3 to 36 months of age
* Reduced incidence of irritable bowel syndrome diarrhea.
* Immune response to adenovirus and influenza-A in-vitro.
* Improvement in pain scale in Rheumatoid arthritis patients .
* Reduces the inflammation associated with Crohn’s disease, IBS, ulcerative colitis.
* Improved growth of the natural flora.
* Improved digestion of food and a thus improved nutrient absorption.
* Production and absorption of critical nutrients – i.e. carotenoids, quinols, vitamins and enzymes.
* Reduced risk of cardiovascular disease.
* Reduction of cholesterol.
* Detoxification of the intestinal tract.
With this ability to live and reproduce in two very different environments (outside the body and inside the body), these strains are said to have a “biphasic” lifecycle. The most well known, well studied and widely used biphasic probiotics are from the bacillus species. In particular, bacillus subtilis, bacillus clausii and bacillus coagulans. However, our modern sterilized food systems have all but eliminated these critical species from our diet.
Bacillus species are quite abundant in the environment and subsequently found as commensal, transient organisms in the gastrointestinal systems of mammals, insects, invertebrates, birds, marine life and even reptiles.
Although they have always been classified as “soil organisms,” studies from the Microbiome Project are starting to reveal that they are actually digestive tract organisms that use the soil as a vector for transfer from host to host and they have been doing this for thousands and based on some strong evidence, possibly even millions of years.
Digestive health is paramount to our overall health. An unhealthy digestive system results in an over-growth of bad bacteria and yeast. Food cannot be broken down properly, essential nutrients are not absorbed and the immune system is compromised leaving us
fatigued and rundown. Over-growth of bad bacteria leads to a higher risk of infections, allergies, and inflammation, which can lead to symptoms of constipation, diarrhea, gas, bloating, acid reflux disease, eczema and often weight gain.
So could something as simple as repopulating the GI system with these strains, via a method that can bypass the harsh environment of the gastric and bile acid system, (not mainstream probiotics) be a means to reduce the impact that gluten may have on those who experience NCGS?
Steve, I believe the way you do about the microbiome. I just received my MegaSporeBiotic and haven’t tried it yet. It has the 3 strains of Bacillus you mentioned and Bacillus Indicus HU36 and Bacillus Licheniformisand says their scientists have found a way to deliver these probiotics safely to the digestive system and past the stomach acid to where they need to go. I hope they repopulate my microbiome.
Steve, I thought you explained your point of view magnificently. And you were careful to word your final question such that you are speaking only of “reducing the impact” of NCGS. You are not denying it’s existence, but explaining that there are healthy steps to restoring more primitive ratios of gut microorganisms that may lessen the stress on bodies that suffer NCGS.
I think your theory is tenable and should be tested.
Though I am virtually off all grains now, I made the move away from wheat and other grains just as a safety measure. I’ve never noticed any reactions to grains by my body, yet I still recommend people consider ridding their diet of gluten, especially.
In my case, my lack of NCGS symptoms may be due to my microbiome. I’ve had it analyzed via the American Gut project and it certainly is not very similar to the average American gut microbiome. I have far more microbial variety than normal. My diet consists heavily of organic, above-ground veggies, with occasional portions of organic meats, cheese, eggs and bone broth and sweet potatoes. I tend to run low on protein, very low on carbs, and high on fat. This diet and the gut microbes may have been protecting me for years from gluten sensitivity. Throwing the gluten away of course will show no change. No worries. I’m content.
As to your suggestion to repopulate the gut in a positive direction, but avoiding the threat to probiotics from the gastric acids, I think it’s unnecessary to immediately think of taking more drastic measures like fecal implants. Studies show the microbiome changes, day to day, and week to week. Species will rise “out of the ashes” so to speak, and get there, and even get to prominence, if one just eats the right foods and none of the wrong foods. Eating a variety of foods, including weeds, fermented foods, and even dirty foods are good ways to increase desired populations of microbes in the gut. Taking probiotics is a crutch to use when one is in trouble. Same for implants. If you don’t eat right, the probiotics, including implants, don’t persist. Almost a waste of time. But food variety and choice is the best way to maintain a healthy gut, as I’m sure you and most others here already realize.
I have long believed that the increase in prevalence of gluten intolerance and celiac is due to changes in our microbiome, more so than changes in the way that wheat is cultivated (though that probably also plays a role).
Hi Glenn, eating a diet that is varied, and preferably seasonal, is a great way to go. However, eating a diet that is right for a person metabolically is an art. I had my diet requirements determined via Metabolic Typing a couple of years back, and then again recently – I’m a Mixed Type. And I tend to make food choices in the same manner as yourself in line with my associated food list – which is also very large and varied.
Unfortunately most people go through stages of food elimination to determine where, or even what, they may have a reaction to, when the answer, with some, is most predominantly the fact that they do not have a large enough diversity of intestinal flora to handle the day to day excesses because of poor lifestyle choices – smoking, excess alcohol, no exercise, bad sleep related habits, bad or wrong dietary choices, and other associated choices – pharmaceuticals, pain medications, PPI’s (Prilosec), chlorinated water, poor stress management, over-exposure to EMF’s, to name just a few.
If you couple the above detrimental elements with a diet that does not naturally contain Soil Based Organisms (SBO’s), or healthy bacteria, due to the purchasing of foods where use of pesticides and other means of reducing ‘harmful germs’, and double or triple washing having been used, then the outcome, depending on the person, may possibly be unfavorable.
This is where something like a real probiotic – in fact another commenter Michelle made reference to MegaSpore Biotic (check it out online) – would most probably be of benefit.
I’m not advocating popping pills per se, but believe that a seeding of a good probiotic – something like Megaspore Biotic – followed by a maintenance dose every now and then, given the positive results coming out of the Human Microbiome Project in relation to the bacteria associated with that product, might just be ‘what the doctor ordered’ for people whose diet may be lacking where it counts most resulting in GI related issues.
My son and I have been gluten-free for awhile now, and might go into the SCD diet as well, since our eczema isn’t gone yet. My husband is not on the bandwagon. He is an athlete, and he says he needs his carbs—lots of them—in order to perform with the best. I’m not sure how to combat that.
I do cheat on our gluten-free diet every once in awhile, simply because if I’m hungry and out and about, the muffins call to me. If there were more gluten-free options out there life would be easier. It’s also true that, since I don’t have a huge obvious reaction to gluten immediately, I don’t feel as much pressure to avoid it. These challenges I’ve outlined are probably common reasons for people to not always be perfectly gluten-free!
Yup, I may be in denial, but here’s my question:
I have looked at the gluten content of beers and, with the exception of wheat beers, most of them are very low in gluten. Should beer be lumped in with other gluten containing foods? Is this reasonable or justified?
What I don’t understand with this and many other issues is how come they cannot be conclusively proven by science so that there would be no need for all this frustrating debate? I have myself left out grains from my diet some 4 months ago because it just makes sense to me and it has brought some improvements to my life, but then there are all these official experts saying that it is nonsense. If there are tests that actually reveal gluten sensitivity, one would think that would be an avenue to prove the existence of gluten sensitivity. One problem, I find, is that people get so entrenched in their own views and do not work together in order to find the truth, but just want to prove the opponents wrong.
Jessica,
Keep in mind that science is often completely unreliable due to the massive power of economic interests. Conventional doctors say that their “science based medicine” is the only sound and trustworthy source…
Really? Is that why the FDA allows the gross distortion of science when pharma companies advertise their drug’s effectiveness with RELATIVE RISK? This should be illegal. When a drug trial shows a drug to be effective in a mere 3% of study participants, and the placebo is effective in 2% of study participants, the drug is advertised as 30% effective (such as in reducing heart attacks for example with cholesterol lowering drugs).
Just look up Relative Risk online… this scam has been exposed in numerous newspaper/ newsmagazine stories as drug sales continue to climb.
SO MUCH FOR THE HIGH AND MIGHTY “SCIENCE BASED MEDICINE”.
To clarify, the “relative risk” formula is arrived at by calculating the difference in effectiveness between the drug and the placebo in clinical drug trials… to give a grossly inflated “effectiveness” in studies. (The difference between 3% and 2% is 33%.)
The FDA condones it, and doctors know they are being fed a line of BS by pharma reps. Next time a doctor tells you how effective a drug is, ask if the “science” is based on relative risk or actual risk. If they say actual risk, look it up yourself to be sure.
What does this have to do with gluten?? A lot since so many non-celiac gluten sensitive people are “managed” with ineffective, potentially dangerous drugs, and miserable for years until the lucky ones figure it out.
Jessica–I believe that Gluten sensitivity is a real problem-and the yakkers are in denial.You will notice the same “M.O.” in people supporting fundamental religious views.
Remember how many years the tobacco companies tried to defend their views regarding the carcinogenicity of their products-JM.
Yeah I agree it’s a shame, unfortunately “the science” most of society summons to solve our problems is just a story rather then some infallible truth, told and weakly fitted to factual data points. More often than not a majority of its form is shaped by the biases and preconceived notions. The only way to progress is to generate enough strong data points so that the shitty stories fit the data about as well as fitting a whale into a keyhole.
Chris,
One more thing I would add is that gluten has a similar molecular structure to our thyroid hormones.
If someone has leaky gut, gluten will be absorbed into the blood stream and like a good immune system should, the immune cells hunt it down to metabolize the gluten.
Because of its similar resemblance, our immune system sometimes mistakes our thyroid hormones for gluten and thus attacks our thyroid hormones. Now, imagine you have a leaky gut and are eating gluten all the time. This can create a chronic hypothyroid condition.
After numerous tests and an MRI scan, our doctor diagnosed my wife’s excruciating stomach and bowel movement pain as stress. It was terrible to watch her suffer as she didn’t know why food was litterly killing her, in my opinion. Her daughter suggested she go gluten free. She read the symptoms online. She immediately stopped all grains. The symptoms completely stopped. It was night and day. I joined her although I don’t seem to notice much difference when consuming a bit of bread. Although I have been Paleo and sugar free for two years now, I experienced a whole host of benefits. We avoid grains and sugar like the plague and feel much happier and healthier. Bottom line, we will all find a way to continue eating bread and flour. It’s flat out addicting. When I was on the carb rollor coaster. I had to eat like it was an emergency. I was more irritable and short sugar tempered. Most would never believe that unless they have experienced it for themselves. Organic and clean keeps me from being mean!
i love your story!
I experience bloating and discomfort when I eat bread or pastries, but have not noticed problems when I drink beer. Does anyone else experience this? I wonder if I’m not so much sensitive to gluten as to other components in wheat?
“people simply distrust anything they perceive to be inauthentic or “faddish”” is part of it.
Among the problems I see:
1) Celiacs and people intolerant to gluten who occasionally eat it anyway, sending mixed messages about the authenticity and seriousness of the issue.
My partner sees this as a restaurant owner & caterer. As most recently as 2 days ago he took time to explain his mostly gluten-free menu to a customer who said she was “acute celiac” and informed her that the fryer is exposed to gluten. Then he saw her knowingly eat something that contained gluten off a friend’s plate.
2) People who go gluten free just for the hell of it, for the trendiness (those who do “fake intolerance”) ruin it for the people who truly get sick from consuming various amounts of gluten. I hear celiac friends ranting about this. If they could eat gluten they would.
3) For a couple of years now “gluten free” has been used as a marketing ploy. For example, a box of tea shouldn’t need that proclamation. That riles me up.
My wife and I have a running joke about all of the products labeled “gluten-free”. I think the most ridiculous we’ve seen so far is a bunch of bananas that were labeled gluten-free.
Agreed.
I have first hand/second hand experience – my mother is gluten intolerant, sister in law has celiac.
I’ve often seen “Now Gluten Free!” on items that have never & could never contain gluten, like fresh spinach.
Ridiculous.
Alternatively, gluten could just be a trigger along with dairy and other foods for people who have “IBS”.
Chris,
Thank you for posting this article! I am a integrative/ functional minded dietitian with NCGS and recently was in a heavy debate with a “denier.” I was so surprised by how strongly this person felt – even going as far as to say that GF diets will soon fade, similarly to how eggs were once thought of as the reason for high cholesterol(now largely dis proven). This person claimed to have “read all the research on both sides of the issue” and didn’t see a scientific reason for all the fuss with gluten. At the end of the conversation I simply asked her this: If it makes other people feel better to eliminate something from their lives, why do you feel the need to challenge that? How is it effecting you? Would you ask someone in an abusive relationship why they were trying to get out of it? Maybe that is an extreme example, but people with NCGS know that it impacts your quality of life every day. Us in the industry know that it is truly the opposite of a fad and the research conducted on gluten and all of it’s components in relation to chronic conditions and long term health is just beginning…..more to come!
Anyone who has truly read the research on NCGS could not come to the conclusion that it doesn’t exist. Arguments could be made about prevalence, mechanism, immune response, conditions associated with, and even causality, but not existence.
I think the prevalence of intelerance is much higher then even u think. Thomas Obrian said 40-60% of the population. I would not be surprised if EVERONE was sensitive with wildly varing responses of intensity and resulting problem. Use the precaustionary principle look both ways when crossing the street and never eat gluten again.
Also — we should all plan on the problems with “science” journalism to get worse. The last school to offer a course specifically in science writing, Johns Hopkins, recently closed its program.
I’m not aware of any schools that offer a specialty in this type of writing anymore. I guess we just have to hope that there will be journalists who have actually taken statistics and have any kind of science background. (Holding my breath … not.)
I think the backlash began because so many self-appointed gurus went around proclaiming that gluten is poison and NO ONE should it eat, ever. People don’t like being lectured to.
For me, it’s cut and dried. When I went on an elimination diet, my perioral dermatitis (horrible rash around the nose, chin, and even up to the eyes) disappeared. When I reintroduced gluten, it came back. I tested it time and time again. One time the rash came back when I didn’t think I’d eaten anything suspect (turns out the Morningstar veggie burgers are not soy, but almost entirely “textured vegetable protein,” or gluten).
Hey Juanita!
Finally a name. I have suffered from what seems to be perioral dermatitis since I was about 17. First I gave up milk and that cleared it up. Then a few years later it came back. Went to numerous doctors and was diagnosed with impetigo, cold sores and acne. I was prescribed different treatments, some of them quite painful. When I said it was exacerbated by milk I was told that there was no connection between diet and skin problems. One doctor finally listened and gave me a topical antibiotic that took 6 weeks to work and I had to used it everyday for 5 years.
Fast forward to 2 years ago and I discovered paleo and Chris Kresser. I gave the elimination diet ago and within a few months I could stop the topical treatment for good. I went back to my doctor and told her my findings… Of course skin problems are one of the biggest symptoms with Celiac/Gluten Intolerance! (Okay she was not one of the deniers in the first place, so I give her credence for that).
Well now I have a name (beyond saying “I used to suffer from acne/dermatitis mainly around my mouth and nose but sometimes up into my eyes that used to weep/bleed and was impossible to cover with make-up”). At the beginning if I consumed gluten I would get small patches. Now I am very compliant because of the reaction I get if I consume any: Vomiting, bloody diarrhoea, swelling of the abdomen, painful joint swelling. Ha ha gluten intolerance doesn’t exist… Take a walk in my shoes…
I had bad gas all my life. My Mom as well. Once we stopped gluten we stopped being so fun and musical at parties. Now our friends no longer want to hang out. This whole gluten thing has ruined my life. I used to be a comedian with the one joke that never gets old now I’m just a normal person. U RUINED ME MR KRESSER!!!!!
I try not to bring attention to my dietary restrictions but when it gets brought up, so many people would rather verbally challenge my diagnosis (gluten intolerant but never tested for CD) than allow me to continue not eating x, y, or z. I’m sure it has a lot to do with what we see in the media about gluten. I just don’t understand it. Its so frustrating to work this hard at getting healthy again only to have people challenge our efforts and not take us seriously. I really hope that in time there wil be more awareness and general understanding of gluten intolerance. Thanks so much for touching on this subject!!!
Where are the references that the numbers refer to?
Not exactly sure what you’re asking, but the numbers in the article are references to scientific journal articles that support the information being presented. You can click on them to see the studies.
I had to stop eating gluten 8 years ago. The prevalence of the belief that gluten-related disorders are just a fad meant that I was too embarrassed to approach my doctor about this – I was under the impression the doctor wouldn’t believe me (which happened to my mother a few years earlier). Therefore I only stopped eating gluten long after I had realised it was causing me problems, and I was never tested for coeliac disease.
I am now in a limbo where I HAVE TO avoid gluten (it makes me extremely ill – not just a bit of ‘tummy trouble’) but no-one believes it could really be a problem – I am always being ‘stealth-glutened’ when I visit my family because I am unable to convince them that my symptoms are real. This means I now rarely see my family because the symptoms can take weeks to ease off again.
This is having a huge negative impact on my quality of life. It shouldn’t be like this. The authors of these irresponsible articles denying gluten-disease have little understanding of the misery they’re creating.
Wow…they actually put gluten into or use gluten containing ingrediants into your food. On purpose.
That is tantamount to knowingly spike your punch (without your consent) or sneaking nuts into a hyper allergic person’s cookies.
I wouldn’t want to visit your family either if they seem bent on knowingly causing you distress.
Wow hilary your family sounds abusive. you have a very good reason to stay away from them. Sorry but I would cut them out of my life and find new people to call family. Your health is more important then pretending you have a white picket fence family. You’re better off.
your chris kresser family loves you!
Hey Hilary,
Just lie and tell them you had the tests done and you are celiac. If they don’t respect your dietary needs then they don’t deserve the truth.
Try a few books on family relations and assertiveness like “Co-dependant no more” or “A woman in your own right”. I’m sorry but that kind of behaviour from them is toxic and you deserve better. It might also help your overall health/stress relief to be able to detach from their behaviours and learn that you have right to express your very relevant needs.
Love to you,
Orla
Hi there,
I also agree that people who experience difficulty with wheat could be responding to the fructans rather than the gluten. I avoid wheat for both reasons, because of the fructans but also because of the evidence showing the drawbacks of wheat/gluten.
Perhaps those who tolerated other fodmaps (like legumes) but did not tolerate wheat were sensitive to certain fodmaps but not others. For example, if they could eat legumes, perhaps they could digest galactans decently well, but not the fructans in wheat. I am currently working with a highly accomplished fodmap specialist who has told me that people can tolerate some fodmap groups better than others. This could be the case for those who are not celiac, but can’t tolerate wheat, but can tolerate other fodmaps. They could simply not do well with fructans. But, yes, in the end of the day, it means removing wheat products regardless of whether it’s the gluten or the fructans they are reacting too.
Great conversations here!
Could you share the name of the FODMAP specialist? I have a friend who is in dire need of such help. Right now, she only tolerates 6 foods.
It’s ridiculous to call gluten intolerance a spurious fad. I know first-hand that it is real.
33 years ago, I discovered that I suffered from gluten intolerance, but not celiac. It was a lonely time to have a “wheat allergy.” I went from doctor to doctor and It took me a year to figure out why I had a permanent sore throat, chronic congestion and frequent migraines. A chiropractor heard my symptoms: I felt okay first thing in the morning but was sick by 11 a.m. — and deduced it might be something I was eating for breakfast. She suggested elimination diets for dairy and wheat and I found the culprit.
I test negative for celiac but my symptoms were very tenacious and predictable. I recommend Dr. David Perlmutter’s book “Grain Brain” for a good discussion of gluten intolerance and how testing for and eliminating gluten can dramatically cure a wide range of neurological conditions.