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!)
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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.
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That was a very great article! and, hits very close to home. My daughter is currently a Physician’s Assistant student (and very good), and, as is always the case, doesn’t believe gluten intolerance is anything. I have been staying with her for the last 4 months, and am constantly being told that I “am cutting so many important nutrients out of my diet”. I am a holistic nutritionist, (and know exactly what I’m cutting out) and have been gluten free for a long time; now, I’ve just gone cold turkey and become “primal”. Feel wonderful. In general, I’ve found that the medical field and mainstream nutritional sector are anti-gluten-free anything. A lot of money would be lost if people would go gluten-free and not have to be treated or counseled for the disorders the have.
i found this article very interesting. After suffering for over two years from various symptoms my doctors could not figure out and continually losing weight. A rheumatologist diagnosed me with fibromyagia (the illness my family finds to be imaginary) with that I discovered my celiac. By removing wheat and gluten from my diet to try and relieve the fibro symptoms I began to feel better. That’s when my gastrointestinal doctor did an endoscopy to diagnose celiac. Ten years later I feel better and relieved that the medical field has come a long way to bring this illness to the public. It explains many of the symptoms I have that are just odd. Gives me piece of mind. Thank you for the great article.
There are some people out there with open minds but there are far more with closed minds. I learned several years ago that suggesting things to people can be very difficult. I try but if I feel that wall go up, I shut up and just feel sorry for them.
Chris, how can Fasano or others see when the gut is going to close or otherwise? How can we say how many minutes it takes to close the gut after a big mac? It sounds to me ridiculous, and this for me enlights how the effect of grains on our health have been overlooked for 10 thousands years…of course if yoy eat grains once the issue is likely to be fixed straight away, but if you eat a croissant for breakfast, have pasta for lunch, some biscuits in the afternoon and a big mac for dinner, you’re likely to have your leaky gut for a long. And here our genes come out, someone is going to develop some issue right away, for someone else it takes much more, but day by day you’re gonna dig into your capability to deal with something stranger to our dna. Why should we close the shed when the sheep already ran away? Grains are not the species specific food for sapiens nor for any other mammal, furthermore we don’t eat wheat as we pick it up from the soil like a hen, because we don’t have neither the goither, the gizzard, nor the enzymatic wealth of the birds. We need technology to make them ready to be eaten, but in this way we make something stranger to our body how it works, as you point out any time we are meant to eat real food, food that we ideally eat as we pick it up, without any technologic process, we cook meat but we could ideally eat it row, as many vegetables as well. This is the species-specific food for we animals sapiens. Why should we go on with defending the non specific food, when it takes far less to dismiss any other thing? It just takes a myth to make us get rid of fatty foods, and in front of such amount of evidence we are not able to think. This is the main question for me that we should wonder. Of course the issue is about challenging the system where we have been living for thousands years, we are challenging our comfort, we are challenging the business, this is gonna challenge the conventional medicine perspective as well, it means challenging the owners of the world, food industry, big pharma, energy… this is the actual issue. We need real food for what we are meant to. The man made food is going to disrupt our gut whether it’s gonna be about zonuline or microbiote, if you destroy your microbiote you have leaky gut. Why should we go on to eat a non specific food just because are not going to die right away like if we ate a poisonous mushroom. If it was like that we would recognize immediately the harm, but the disguised harm of grains has been overlooked for so long because it takes much more to develop disease, but it doesn’t mean that we shouldn’t avoid them if we still haven’t had any problem, are you waiting for a disease to act?
It’s not surprising that there are idiots who feel compelled to “prove” that gluten sensitivity is not real. You can find any number of self-styled “experts” who claim autism isn’t real, ADD isn’t real, and (my favorite of recent vintage) a member of Congress who told a constituent that bipolar disorder (recognized by the conventional medical community for at least 70 years) isn’t real, either. The extent of a person’s science credentials is inversely proportional to his tendency to mouth off about areas where he has no knowledge.
Does it matter what ‘science’ tells us? I am now eating grain free and feel better than I have for some time. I used to have unpredictable mood swings, but now I only have those if I inadvertently eat some wrong foods.
If your health is less than perfect try cutting out gluten, wheat and then all grains. It is not east to do. And eating at a restaurant is impossible. To buy a meal out is fruit and water or you just have to take your own food.
I hope that these comments will help someone who is faced with opposition to try.
Great timing. My doc suggested gluten intolerance for all that ails me. But I’m a skeptic and initially doubted this was my problem. Yet I feel so much better GF, so now I am certain NCGS exists. (I did an elimination diet and have been GF for several months.) Once in a while I have some gluten in a meal (usually eating out or at a birthday celebration). These days it’s not my stomach that bothers me with a gluten bomb. It’s the peripheral neuropathy and searing pain that flows through my body after having gluten. That kind of pain makes the decision to be GF pretty easy.
Thank you for this timely article! One son and i have NCGS, the other son and husband do not, and think we are crazy. So I forwarded the article for a quick intro to the FACTS. Thank you for referencing real scientific research articles. Very helpful!
Being gluten-free for years did nothing to improve health issues overall, but these days indulging in a piece of naan or a few bites of bagel on occasion results in a few weeks of “anal leakage” among other lovely effects. So it is avoided. Could care less about “science”, which will always be measuring a moving target, just like feeling better than awful, rather than the usual painfully awful.
Those in so-called denial just haven’t had the experience, yet. Ignorance is bliss.
The timing of this article is perfect… my college aged son in taking a Nutrition Course for his Community Health Science Degree. He says his teacher tells the class that the Gluten Free Diet is a fad. My son knows that is not true since he has NCGS himself and knows the benefits of the diet. Information like you produced in this article is priceless. Hopefully he will forward to his teacher. Thank you
All i know is this. For YEARS i struggled with epigastric pain, bloating, gas, had to plan outings around the availability of restrooms.
One blessed evening i bought a pack of cookies and ate too many on the drive home. Couldn’t find the bathroom fast enough, gut pain- just horrible. That evening, finally got to put 2and 2 together. Found Kresser’s website, cut out gluten. Did some more research, came across FODMAP. It’s like a new lease on life. And the best part? If I’m gluten free for several months, i can still have a slice of bread or a beer and feel ok, long as i go back to FODMAP the next day.
You are always informative and I thank you for always keeping us updated.
I found a “gluten intolerance denier” published in the journal of a well-known traditional foods organization named after a famous dentist. I was so frustrated by it I wrote a rebuttal article here: http://gnowfglins.com/2014/09/22/going-gluten-free-fad-or-necessity/
Chris,
Wonderful article. I very much enjoy your approach. I feel it takes a careful look at the research available and presents information in a way that does not succumb to dogma.
Of potential interest (and without much data to support this view), I suspect humans have been consuming gluten for longer than 11,000 years. Triticum monococcum (einkorn wheat) and Triticum dicoccum (emmer wheat) are some of the earliest cultivated grasses from the “Fertile Crescent”. And while these plants were domesticated approximately 10,500 years ago (or so, for einkorn), that is not the date when they entered our diet (at least not likely the date). The cultivation of grains would have likely required a long time of exposure to this food in the diet to generate familiarity with these species and identify non-shattering forms, but also to figure out how to cultivate them on a larger scale. The date you present is certainly when it entered cultivation, but I would suspect the actual date of first consumption to go back much further (though certainly at a smaller proportion of the diet). I don’t feel it is realistic to consider that humans walked up to this plant (figuratively speaking), realized in a relatively short time it could be cultivated, and drastically switched food procurement patterns without a long history of interaction with einkorn wheat. Cleary, this isn’t a stance that I can provide a lot of supporting evidence (at the moment), but I think there is some logic to it. How far back gluten consumption goes, I’m not sure, but I believe it goes back longer than we realize.
Again, thank you for the work you do. Ktankeyasin (take care of yourself).
Thank you, Arthur, for pointing out the illogical nature of the assumption that humans suddenly began cultivating grains 10,000 years ago without having consumed the wild product for many years. That approach would have been a foolish survival strategy. There is evidence that humans consumed wild grains as long as 20,000 years ago. Scientific American (12/17/2009) claims there is evidence that grain consumption extends back 100,000 years. However, with all the variety in the diets of Paleo-era humans, it’s likely that grains made up a very small part of the diet, and were certainly not the major component they are in today’s diets. They just weren’t sufficiently nutrient-dense to justify the effort needed to prepare them. And most wild triticum-family plants don’t have the gluten content of modern wheat, which was selectively bred for higher gluten content.
Re: There is evidence that humans consumed wild grains as long as 20,000 years ago.
That wouldn’t be surprising, but I doubt there was much strategy to it. Humans likely ate anything that seemed to have short-term nutritional value, and long-term side effects might have gone uncorrelated.
Grains made it possible for us to be having this debate. Only non-migratory (e.g. agricultural) cultures have the context in which to create technologies that aren’t trivially portable. It can also be argued that we are mostly descended from the survivors of population “bottleneck” events, which favored specific metabolic quirks (e.g. grain tolerance, fructose fat storage, ketotic fall-back). Life expectancy was lower then, as well, so long-term dietary concerns we now have generally didn’t arise.
The fact that ancients ate ancient grains does not elevate grains to RDA status. Ötzi the Iceman (einkorn eater) tells us: eat authentic neolithic grains – get authentic neolithic ailments. His tally so far includes bad teeth and a full expressed genetic tendency to heart disease.
Re: … it’s likely that grains made up a very small part of the diet, and were certainly not the major component they are in today’s diets.
No debate there, and the same is true for added sugars. For most people, reverting to an ancestral diet for their genotype would do wonders. Now where did I put that 7133 BCE cookbook …
re: And most wild triticum-family plants don’t have the gluten content of modern wheat, …
My understanding is that emmer actually has more gluten than the modern weed.
Yes that is probably the case, BUT today’s grains have been hybridised and don’t resemble the ancient grains.
Chris asks if there are “gluten intolerance deniers” in our life and how we respond to them. Yes, there certainly are. Even among supposedly smart, skeptical people who supposedly respect me and my intelligence. It never ceases to baffle me how we can show up at a gathering and have people marvel at how great we look — because we do; we look and feel better (living Primally) than we have in decades — and proceed nevertheless to tell me that there’s no basis for what we’re doing. Huh? I can even talk about my life-altering gut problems that are now gone, my joint pain and skin rashes and headaches every morning of my life and head full of mucous and constant throat clearing and split fingernails, and more, all of which are completely gone, and still have people willing to argue. So very weird. So how to deal with it? I’ve evolved. Two years ago I tried so hard. I referred people to Web sites and books and studies. It made me stressed and sad for them when I “failed.” So unfortunately, I’ve given up a bit. I won’t waste my time in conversations with people who are not curious or open-minded enough to explore the possibility of being incorrect. I think the intransigence and emotional charge comes from addiction. It’s very powerful, and the threat of giving up ones bread, or beer, causes a fear response that clouds rationality. That’s why they get so gleeful when they think they find support for the status quo. It’s quite sad, actually. But remember what happened when the few people who left Plato’s cave tried to go back and let others know about what was outside, and what they really were doing? It often doesn’t work out so well. So stay healthy, try to help those you care about, and accept that you can’t help everyone. And be grateful for the Chris Kressers (and Alessio Fasanos) who continue to advance and convey the science.
Naomi,
Your comment is going up on my bulletin board. And I might make a few extra copies for my purse to hand out as needed. Very well said – thanks!
Naomi–You hit the nail right on the head!! I cannot walk-and know that if I could get ridof gluten 100%-I would be able to improve joint and walking performance–but let’s face it–I AM TOO CHICKEN to give up my favorite food-TOAST-I plan to give it another go in April. My withdrawal symptoms(severe headaches for one) are so severe-I am forced to return to-OH NO!!!!!!!!!!!!!-BREAD.!!!!!!!!!!!!!!-Best Wishes-JM.
Naomi,
I feel your pain! It is sometimes interesting to turn and ask the person, from a place of pure curiosity, why it is important to them that the way you eat is a “fad,” and not based in science. Why is it important for them to prove you wrong? Sometimes I find their claims are based on personal insecurity and feeling threatened by something they don’t feel they can or want to do. You’re right that you can’t reach everyone, and sometimes they have to get there in their own time. I sometimes laugh imagining what it would be like to try and “coach” my 20 year old self to change the way I ate and what I believed about medicine and food.
Wheat and sugar bind to our opiate and dopamine receptors in our brains. People are addicted to them and if they have yeast overgrowth their second brain, the microbiome in the gut is sending very strong messages to their brain to consume carbs. This addiction is strong and controlling, and the withdrawal can be unpleasant. The Paleo lifestyle has improved my families health mentally and physically. If people are interested in what we do I share, and I always mention the addiction and that trying a whole food based diet for 30 days is the first step to take. However, I advise them that the first two weeks could be rough and to be prepared for that possibility. Personally, I feel our obesity epidemic is mostly the result of wheat and sugar addiction. Everyone in my family has NCGS, and going gluten free was the first step towards better health, but embracing the Paleo lifestyle and balancing our microbiome have resulted in the best overall health we have ever experienced.
I had been suffering from very painful Bursitis in both hips for 15+ years. I had several cortisone shots, reluctantly, but the pain was that bad. I also went through several rounds of physical therapy, the Bursitis always came back. Recently, my Ortho doc suggested it’s time to remove my Bursae sacs. I decided to try the natural route before resorting to a surgery that might not even work, so I went Gluten free. Within 2 weeks the pain was gone. I can’t believe what a different life I live now. You don’t realize how much pain controls your life until you don’t have it. So to the nay-sayers in my life, I don’t have time to listen to you, I’m going on a hike, or maybe a bike ride, or better yet a walk on the beach, none of which I could do without a lot of pain just 4 months ago.
Wow I had the same problem and my doctor just shrugged it off like it was no big deal, like it was normal for me at the age of 17 to have such symptoms. I have been suffering for YEARS.
I’m now 37 and no one will convince me my grain free diet is ELITIST.
Melinda,
Exactly! Well said. My experience with diet change was also life-changing (or perhaps I should say, life-giving). Your words remind me not to let the nay-saying taint my gift of improved health.
I’m old enough to remember the days when vegetarian diets were seen as the healthiest way to eat, and grains were a big part of that. I even ground whole grain berries for bread (it was tasty). The thing is, I notice that if I didn’t eat bread, it was much easier to not gain weight. I stopped eating bread a while ago. About 3 years ago, I went gluten-free though I have no overt symptoms of GS. I think people don’t want to believe that gluten can be problematic is that they can’t bear the thought of giving up bread and grains in general
I’ve read that some farmers spray wheat crops with Monsanto’s “Round Up” in order to “ripen” the wheat for quicker harvest, especially in northern regions that have a limited planting season. According to what I’ve read, it’s impossible to tell which wheat has been sprayed because it’s perfectly legal to do so. I wonder if spraying poison on our wheat could be related to some of the problems experienced by those who consume wheat. Makes common sense to me.
Nikki yes you’re right. Go to Mercola’s website for the answer to your exact question on Roundup on grains.
Nikki, conventional framers may spray many things besides wheat with RoundUp. It doesn’t make the crop ripen faster, but desiccates the foliage and non-food parts of a plant, making it easier to machine-harvest the desirable part of the plant after that has ripened.
I heard it is the ‘gliadin’ NOT the gluten… ???
Gliadin is a class of proteins present in wheat and several other cereals within the grass genus Triticum. Gliadins, which are a component of gluten, are essential for giving bread the ability to rise properly during baking.
I have a question about Glutenin. I have heard from a therapist I am working with that those with type A blood type do not have the enzyme to break down Glutenin in wheat. (am i spelling that correctly..hmm) anyway, she attended a seminary in Las Vegas on Anti Aging where she heard this taught. I have been trying to track down information regarding this claim. Do you have any information regarding this claim? According to the conference speaker, it was a fact.
Can’t resist: “seminary in Las Vegas” I know you meant seminar but I got a chuckle.