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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Several years ago, I connnected symptoms that I had been dealing with four years prior to this discovery with a gluten sensitivity. Therefore, I cut out wheat and gluten. Within a year, milk products had a similar effect on me. Then legumes, quinoa, rice, and most recently, nightshades followed suit. Seems like the only starches I can tolerate come from fruits and sweet potatoes.
I suppose there are people out there who think I’m on some fad diet. I lost about 40 pounds. A friend suggested that I might have anorexia! If she only knew how much I eat when I know it’s ‘safe.’ Unfortunately, ‘safe’ happens less and less often. There are no functional medicine practitioners here … My doctor said, “This just happens as you get older.” Huh? So within a couple of years, when I’m unable to tolerate anything and I’ve still got a six-year-old to take care of, am I still dreaming that I’ve got gut issues?
You bring up a great point about the concept — and harm caused by — “science journalists.” These are people with little to no scientific background, in the same way that most pharmaceutical reps have absolutely no medical training and are usually hired because they look good, and yet their published words carry major weight in the world of pop culture “journalism.” We see this now across the spectrum of living and healing naturally, through foods and alternative/functional medicine. It behooves neither the food nor the pharmaceutical industries for people to get healthy, and they will do whatever they have to in order to push their agenda. Thank you for pushing back!
Let’s put it this way: my health is much better without wheat. It just is. Chris, what about the idea that eating foods with highly treated wheat and processed flour can be damaging, apart from their gluten content?
Everyone should avoid foods with Gluten. If any want to know everything ask Dr. Glidden/Wallach. I have no medical conditions listened to them and feel excellent.
Excellent article Chris! Of course, as most of the people reading this, there are some gluten-free haters in my life. I understand though… We’re human and humans get addicted and comfortable. Most don’t like change. It’s unfortunate that most don’t make the health improving and health sustaining changes needed on a daily basis. They break once, twice, or however many times, however often. Even when one’s health reaches that point of the doctor delivering news that no one wants to hear… They still resist change! I’m glad you mentioned so many of the neurological problems induced by gluten because that’s what I often tell people when I’m asked why do I go gluten-free. When I calmly respond with because I care about my brain health, they’re attention gets a little sharper on what I’m saying… And doing.
In Gratitude
I’m stealing that: “Because I care about my brain health.”
Chris – my son was recently diagnosed with ADD. He is also having a terrible time with his gut. He is only 8 years old, and we are very leery of medicating him without exhausting other avenues. Although my husband and I are willing to pay out of pocket for the test, there is apparently only one lab in the country that tests for sensitivity (is this right?). Can you explain more, or refer me to the right source about how the elimination/provocation challenge works? Is it simply reintroducing gluten after a period of time without to see if problems arise and if so what types of problems would I be looking for?
Hi Sarah,
Many labs test for gluten intolerance, but there’s only one commercial lab test that I know of that tests for intolerance to all of the different fractions of the wheat protein, including glutenin, wheat germ agglutinin, deamidated gliadin, and gluteomorphin as well as the three different types of tissue transglutaminase (2, 3 & 6). This is Cyrex Labs Array #3: http://www.joincyrex.com/page/2193/Array-3-WheatGluten-Proteome-Reactivity-and-Autoimmunity-Screen. Note that I have no affiliation with Cyrex and do not benefit from recommending them.
Note that it’s possible to get a false negative on that test if you’re not eating gluten. The recommendation is to eat some wheat products for a couple of weeks, then wait about 21 days before taking the test.
For the elimination/provocation protocol, you would remove all wheat and gluten products strictly for 60 days, and then reintroduce. If intolerance is present, it is usually very obvious. Hope this helps.
Before I went Paleo I was getting headaches everyday and thought that it was my hormones because that’s what the doctors told me. Within 2 days of giving up grains(and that is the only change I made at first) I no longer had headaches. That is what I tell people about when I try to get them to go Paleo. I don’t mention Gluten or anything – just my experience with it because I don’t want to scare people off. A lot of people think that because bread has such a big presence in the bible that it must be Ok to eat, they don’t realize that they were sprouting their grains and that the grain was vastly different than what is being grown today.
I’d like to point out that the sprouting process does change things a bit along soaking of legumes although it’s best to do a thorough, detailed client comprehensive analysis/assessment to discover what potential dietary roadblocks are present before giving blanket recommendations for anyone. Assessing, testing, and not guessing is what differentiates leading experts(dr/CCN/FDN/Nutrition Coaches) above the rest of the pack! Also, I seem to do well and still lean as always 3-4 hours post meal when I have 2 slices of my Squirrely sprouted grain toast(sunflower/sesame seeds/only grain is sprouted non-gmo whole wheat. I’d like to ask your thoughts on Kamut or Khorasan Wheat commonly produced properly back in the Egyptian days? Thanks. Love your work.
From about the age of 16 (I’m now 60), I suffered with brutal heartburn/reflux daily. As I aged, I periodically had medical investigations that led nowhere. One doctor actually got angry with me when she wanted to prescribe Tagamet (this before the current OTC versions were available) and I refused, as I was hoping to find the cause. Maalox was cheap and a constant companion, I would not leave the house without some and it was a permanent fixture on my bedside table. Over 12 years ago, well before the ‘fad’ really hit, a naturopath, testing for another problem entirely, told me that his testing seemed to reveal gluten intolerance, though he found nothing related to the problem that had brought me to his office. I had not heard of such a thing, but immediate removal of gluten from my diet resulted in immediate cessation of heartburn/reflux without there being any further changes to diet or the amounts of food I ate. I, of course, LOVE gluten and would occasionally eat some. Small, occasional ingestion of gluten would not set off a reaction, but if I got cocky/careless and ate too much or too frequently, guess what? Clearly my gut can digest some gluten, but very poorly indeed, and I don’t need any scientific research to prove it. As to other personal conditions that may have been linked to the gluten intolerance, I can only conjecture. I am now muddling along in paleo world, trying to find the foods and ways of eating that suit my tastes, schedule and habits. And there is no Maalox in my house.
Unfortunately, Maalox may have been compounding your problem. When you take Maalox (or Tums or Rolaids) it decreases the amount of acid in your stomach. The receptors on the mucus lining of your stomach then recognize that the stomach has less acid than it is supposed to and steps up production of acid. Then you’re needing more Maalox. With Maalox as your “constant companion” I suspect that may have been the case. You may have unknowingly been making your condition more miserable. I’m glad you found the source however. Congratulations!
Ironically, immediately prior to reading the above article, I read another one by Brian St. Pierre from Precision Nutrition entitled: “Settling the Great Grain Debate: Can Wheat & Other Grains Fit Into a Healthy – and Sane – Diet?” Here is the link:
http://www.precisionnutrition.com/grain-wheat-debate?utm_source=GrainDebate&utm_medium=Email&utm_campaign=GrainDebateEmail
Rather than explain all of the apparent contradictions, I would recommend simply reading that article. Two reputable sources with two different takes on the gluten debate. No wonder people are confused!
First, I’ve never claimed that all people should avoid all grains all of the time, nor have I claimed (as others have) that everyone is gluten intolerant. So I do not disagree with that part of the article you linked to. However, there are some gross inaccuracies, which I have addressed in my article. This one stands out:
That is not at all what Gibson’s study showed, nor did Gibson ever claim that NCGS doesn’t exist. As I said in the comments below, people in Gibson’s study that were on a gluten-free diet experienced resolution of symptoms even while eating other foods high in FODMAPs (like legumes, which are much higher in FODMAPs than wheat), which conflicts with the idea that the patients in the study were only sensitive to FODMAPs, and not gluten. Also, even if the patients in that particular study turned out not to be gluten intolerant, interpreting that finding to mean that NCGS doesn’t exist in anyone is simply absurd, and ignores the hundreds of papers linking gluten intolerance to a myriad of conditions.
You’re misinterpreting the results I think.
No group had “high” FODMAP intake. In fact, FODMAP intake was low in the diets in the study.. that was the point of the study. Gluten specific effects were only noted in 8% of participants, and during the cross over no effects were observed.
Can you provide more context as to where you’re reading something different?
Chris, thank you for all your work on the important topic of gut / gluten intolerance, etc. After I found you, I spent the better part of a week reading EVERYTHING you’ve written. After 5 years of struggling with feeling absolutely terrible, insomnia, weight gain, “hangry”, pre-diabetic, missing 1/3 eyebrows. I have found relief! I have only been off gluten for a few weeks and the change is nothing short of a miracle. My family does support me, but I do think they think I’ve lost it. Making bone broth, FODMAP, celtic sea salt in my water etc. After passing through menopause and feeling like I wasn’t going to live past my 50’s. Your research has put me back on the bath to healing. So grateful for all you do here. Thank you!!
Sarah, I’m so glad you’ve found relief. Welcome to the community, and congratulations on following your intuition and going against the grain (pun intended!).
Hi Chris,
Thank you again for a very informative article! You didn’t mention kidney disease, but I think my kidney issues and gluten are related. In a nut shell: In 2009 I was an altruistic kidney donor. Even though I was a vegetarian for 10 years prior to that they announced me to be very healthy before they took it. Two years later, after many years of digestive issues I started a paleo diet and never felt better. I am, however, a sugar addict, so every year as I commence making holiday cookies for my entire universe, I fall back and eat paleo WITH cookies and wash it all down with beer! I usually fail to get myself undercontrol for several months. In February my doctor ordered blood tests and sent me to a Nephrologist who ordered tests again and last week informed me that I am @ stage 3 kidney disease! How did that happen so quickly??? I have a daughter-in-law who’s a PA and another one who’s a Nurse Practitioner and BOTH + my son’s are giving me all kinds of hell because I am insisting on trying to beat this by seriously cleaning up my diet before I have to go back in May to be retested. I am not diabetic and do not have high blood pressure. when I am good I eat the healthiest diet I can, including homemade: bone broth, water kefir, sauerkraut, & kombucha. I eat all organic, healthy fats, little fruit and tons of vegetables. I run, do yoga, and workout. I am 66 years old and only take meds for hypothyroidism. Do you have ANY thoughts about this? My kids are worried that I am waiting too long since this seems to have come on so suddenly, but the Nephrologist himself scheduled my appointment in May…hello! Thank you again for all you do for us!
Please keep us posted on your kidney journey. Do you have bubbles in the urine. I do and understand that it is the kidneys dumping the protein it cannot handle and 10 years down the line you may get kidney failure. What tests did they do that show you have Stage 3 Kidney disease. Nothing shows up on my blood tests. I also have blood in the urine that can’t be seen but testing can’t find out where it is coming from. I just heard somewhere of a kidney and liver problem with gluten. I think you are on the right track in trying to heal yourself. Best wishes.
My husband was told for years that he didn’t have Celiac Disease because his blood test was *always* negative. Finally, after much research, I pushed for the doctor to send him to a gastroenterologist. It took 1.5 years for my husband to get in (yay “free” Canadian healthcare), but he finally got a gastroscopy. He was already eating a gluten free diet, and of course, the biopsy came back normal. The he started eating gluten again for a few months, got a gastroscopy again (as well as a colonoscopy to rule out Chrohn’s and Colitis), and the biopsy showed Marsh I or II (villi still intact, but inflamed). Our gastroenterologist rightly interpreted that as Celiac Disease (even though it’s non-specific) because his duodenum was not inflamed while on a gluten free diet, and was inflamed while eating gluten.
With that said, we also suspected SIBO because his vomiting would not end, even on a gluten free diet, so we begged his GP for some Rifaximin, and ever since he took that, everything has been GREAT. Vomiting GONE. And that was persistent for about 3 years (at least, when we noticed that it couldn’t possibly be another stomach “bug”). Even his asthma has improved!!!
My dear wife was a denier, until she saw the positive changes.
My facial skin, problematic since adolescence, cleared up.
My mood improved. No SAD for the last two winters.
Best of all, the arthritis in my right shoulder cleared up. Not just improved… went away totally, after 15 years of increasing pain and the promise of a steroid shot if I wanted it.
For me, gluten may not be the culprit, though. Or at least the only culprit. I have since thrown out many fruits and grains, along with yeast and legumes, in order to get relief from daily bloating, gas and fatigue. My issues seem more related to FODMAPs than to a single protein.
I think the issue with Gluten non Celiac is the additives people eat with these products for instance tomato sauce etc numerous people now have not a clue they are fructose or even sugar intolerance…There is absolutely nothing good about sugar it is 100% a toxin so is synthetic fructose it is killing people dead I was told decades ago by a Gastroenterologist who said I was sensitive to gluten but my tests came back for Celiac negative so I went on gluten free now I stopped eating any grains breads pastas oatmeal etc they now are on my never eat again list I am going Ketogenic without these products…I am going back to eat the way life is suppose to be if it has a box I refuse to buy it at all…
Thank you for your informative article. I have NCGS yet find it very hard to make close family members see the real problem. It is obvious I cannot eat wheat, particularly, as I have a severe reaction and get an obvious rash on my chest. However, because the doctors tests have said that I am fine, people don’t believe me. Close family friends still think I should just ‘try’ gluten again or think it is something completely different that the doctors haven’t found yet. I know what it is, I know how I feel and I will never eat Wheat again. I just wish doctors would realise it as it took me 7 attempts at the doctors before I gave up with them!
Hi Chris,
You wrote this: “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.”
I just had a discussion about gluten intolerance with a ‘non-believer’ this morning, discussions like this remind me of an idea by Schopenhauer: All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident.
I guess gluten intolerance is somewhere in those first two stages…
These articles attacking the science on gluten are personally offensive to me. They have the stench of a powerful agenda along the same lines as the climate change deniers.
Chris, I looked for my symptom (asthma) on your list and it wasn’t there, so I’m betting your list of gluten or wheat induced ailments is still not complete.
Do you know how badly I would like to relive the first 45 years of my life without asthma? Sadly it isn’t possible to turn the clock back. I had gotten used to it but I never realized how bad it was until it was gone. There is no telling what my athletic potential could have been–I could never work out near my potential because I would reach a point I could no longer get enough air in my lungs. Now I am 47 and still amazed I can easily run a mile without gasping for air.
Breathing treatments and inhalers didn’t fix anything for me, the best they could do is relieve symptoms. I eventually stopped using them.
And in my case you can’t blame dairy or other grains–I still eat dairy, oats, white rice. The biggest change in my diet these past two years is total elimination of wheat.
No doctor or medical professional has ever diagnosed me with an intolerance by the way–I had to figure this out on my own.
I was disheartened to hear some of my friends quoting these articles about gluten sensitivity being false. They were laughing about it and they had no idea that I suffer with intolerance from it. The doctor told my father, back in 1973, that he was allergic to wheat. Sadly, his philosophy way “eat it and force your body to accept it.” He developed diabetes and died from complications from it. I come from a family of 5 boys and me, the only girl. Two of my brothers and I have developed gluten allergies, all in our fifties, the same age as my father. I suffer from SIBO and was treated for that as well. I have found that wheat is not my only intolerance. All grains give me issue. I knew I was in trouble when my dietician told me I should be able to eat white rice, and when I told her I could not, she got a blank look and told me to eat it. I am not putting something in my gut that causes me issues just because I “should be able to eat it”. I think we all need to listen to our body and follow what it is telling us. If I stick to meat, fruit and vegetables (limited ones because of low fodmap) I feel better no argument about it.
Chris, I’d be interested to know your view on Dr Stephanie Seneff’s work that it may be glyphosate, rather than gluten itself, which underlies the gut and digestive problems that so many people are experiencing?
@Isabel
I too would love to hear about any studies done to further investigate Dr. Seneff’s theories about the high amounts of glyphosate being sprayed on wheat(which is not the only crop being sprayed). I don’t mean to imply that this would negate the idea that NCGS is a real condition. I personally believe it is a true condition but I wonder if a certain portion of the NCGS population may be experiencing issues with wheat and not with all other gluten-laden foods. Perhaps, residual glyphosate in certain crops can be to blame for some of the NCGS population’s intolerances.
This was a great read.
Just wanted to share – I suffered from severe insomnia and anxiety (granted, quite possibly a result of the insomnia) for 2.5 years, from the age of 23.
I saw many different doctors during this time, none of whom were particularly helpful nor particularly interested in what brought on my nightly heart palpitations/sweating/panic attacks. I suffered brain fog, was irritable and uncharacteristically anxious – the entire ordeal controlled my life – it was debilitating.
Convinced it was a psychological problem, I finally I saw one doctor, who promptly took me off gluten and within 2 days I was sleeping like a baby. That was four years ago and I still sleep like a baby (except for the 4 times I have accidentally ingested gluten).
I cannot understand people’s disdain for those claiming gluten intolerance – I know with 100% certainty that gluten ruins my life and completely changes my personality.
Moreover, I really feel for those who may not even know that this could be the cause of their troubles too.