Updated April 9th, 2015
There are many people who will tell you that unless you have been diagnosed with celiac disease, you do not need to take gluten out of your diet. This is simply untrue. However, in May of 2014, the same month that honors Celiac Awareness, there was a huge media blitz slamming anyone going gluten-free who wasn’t diagnosed with celiac disease. There were tons of inflammatory headlines such as: “Surprise! Gluten Sensitivity is Likely Bullsh*t” or “Your Gluten Sensitivity May Be All in Your Head” or “It Turns Out Gluten Sensitivity Is Fake.” There were also a number of dumbed-down videos published explaining that gluten is “just” a protein and nothing to worry about for the vast majority of us that do not have celiac disease. Even celebrities like Jennifer Esposito and John Stewart jumped on board the criticizing bandwagon, while food-writer, Michael Pollan proclaimed on Huffington Post Live that “gluten sensitivity is a bit of a social contagion.”
Suddenly everyone who was eating gluten-free was under public scrutiny! I heard of baggers questioning shoppers about why they bought gluten-free bread, and waiters asking patrons if they had celiac disease, when they ordered off the gluten-free menu.
But the media didn’t get it right. The gluten-free diet is NOT a fad. People are taking gluten out of their diets, because they’ve been to doctor after doctor, and have had test after test performed, only to be told they’re just fine. And yet, they don’t feel fine. So they’re testing to see if going gluten-free makes them feel better. And if it does, then why shouldn’t they go gluten-free? Even without a definitive diagnosis of celiac disease.
There is still so much to learn about gluten sensitivity, but just because we don’t know everything about this disorder, does not mean that its ramifications aren’t important.
The “gluten-free diet is just for celiacs” media frenzy all started with a study that was published in August 2013 by Biesiekierski et al. in Gastroenterology . A small subset of the general population with Irritiable Bowel Syndrome (IBS), were put on a diet low in FODMAPs, a type of carbohydrate found in many foods, including wheat, for 7 days. They then re-introduced vital wheat gluten (isolated from the rest of the wheat), and found “no evidence of specific or dose-dependent effects of gluten in patients with NCGS [non-celiac gluten-sensitivity] placed on a diet low in FODMAPs.”
In other words, according to the FODMAPs study authors, there was no difference in symptoms between those volunteers who ate high-gluten, versus those who ate low-gluten diets.
However, there are several problems with this study.
- First off, the paper is poorly written, confusing, and full of apparent discrepancies. For instance, they challenged patients with high-gluten, which they called “carbohydrate-depleted gluten,” so that they could isolate it from the starchy part of wheat. Yet, the gluten they used still had 15.6% starch in it! Also the population of the study was a small sample size to begin with — 37 people at the start of the study and only 22 people by the end.
- The study only sampled people with IBS. They assumed that complaints of gluten sensitivity only occurred in people with IBS. Why couldn’t complaints of gluten sensitivity occur in people without IBS? In fact, a high prevalence of gluten-related disorders do occur extra-intestinally , . So if even if perhaps the digestive complaints of the IBS group are not related to gluten, that doesn’t mean gluten sensitivity doesn’t exist! Maybe IBS patients’ gastro symptoms are FODMAPs-related and not gluten-related, but that doesn’t mean non-IBS people can’t have gluten sensitivity!
- They said if NCGS people were indeed gluten sensitive, then they should have had minimal symptoms on a gluten-free diet, but since they still had symptoms, then it must have been something other than gluten causing problems. Why couldn’t the patients be gluten and FODMAP sensitive? I am! The way that I react to gluten is much different than the way that I react to fructose/fructans/FODMAPs, yet I am sensitive to both. Furthermore, as I’ve mentioned before, the conventional gluten-free diet only truly heals a small percentage of celiacs. We know that gluten is the main culprit in celiac disease, but whether celiacs are sensitive to all grains, or there is cross-contamination at play, or there’s a leaky gut that hasn’t been solved, or other issues with dysbiosis, we don’t know yet. So it’s just as conceivable that the conventional gluten-free diet only helps a small percentage of GS patients as well. The lack of improvement for GS patients on a gluten-free diet is not proof that gluten sensitivity doesn’t exist!
- They tried to prove that it wasn’t gluten they were sensitive to, but to FODMAPs. Wheat is a FODMAP. So maybe those complaining of gluten sensitivity were not sensitive to gluten (the protein) after all, but instead to the starch part of wheat. I have also pointed out that there are portions of wheat beyond gluten that are problematic. In fact, in a reply to this study, another group of researchers suggested that Non-Celiac Gluten Sensitivity might be better named Non-Celiac Wheat Sensitivity . So maybe something else in wheat is the problem, not necessarily gluten, for people who suffer from IBS. So what? For all intents and purposes, wheat, in some form or another, is causing them problems. The general population doesn’t care which part of the wheat plant. They certainly aren’t going to start going out and ordering soup with a side of gluten! I love when Mark Sisson says: “Sure, I guess some IBS patients can start doing lines of isolated gluten powder.” But most people are eating or avoiding wheat.
- They tested for antibodies to gliadin during the first week, but didn’t bother to do so in the 3-day re-challenge, for reasons they did not explain. They say that “only” one person responded with T-cell activity. But out of 37 people, split into 3 groups for each diet (high-gluten, low-gluten, placebo) that’s roughly 10%! About the same percentage of the general population that is thought to have gluten sensitivity! Now the number of antibodies may not be as high as those seen in celiac disease patients (as they pointed out), but we aren’t looking at celiac disease here. As I’ve discussed before, gluten sensitive patients can be found to have gluten antibodies. The study glossed over this little detail.
- They only tested for symptoms of gluten sensitivity up to 3 days after the ingestion of gluten. Then they concluded the study. Research has shown that onset of symptoms for people with gluten sensitivity can occur anywhere between hours and days of ingesting gluten . One study reports IBS patients reacting as much as 9 days after ingesting wheat , and an FDA analysis saw as much as 14 days or longer . Three days was simply not enough time, especially in such a small sample size, to see real symptoms develop. Personally, my symptoms occur about 5 days after eating wheat and remain with me for several weeks. So I would have fallen into the camp of people for whom “no evidence of specific or dose-dependent effects of gluten” were found. And yet, 2 days later, I would have been really feeling the misery. It is also known that the “time lapse between gluten ingestion and the occurrence of symptoms” in celiac disease can even take weeks or even years , so if any of these NCGS patients actually had latent celiac disease (which might fall under the umbrella of gluten sensitivity), this study would have overlooked that.
Finally, this isn’t really about the study itself, but its designers. I wonder if they didn’t let their bias affect their interpretation of their (poorly designed) research. They are the ones who developed the low-FODMAP diet, complete with cookbooks, a smartphone app, workshops for dietitians and a FODMAP-friendly food certification program. Their whole livelihood depends on the validity of the FODMAPs theory, so they have a lot to gain by bad-mouthing the gluten-free “craze.” In one video (about 55 minutes in), you can see the visceral disdain that Dr. Gibson has for gluten sensitivity. And that has unfortunately made him myopic in terms of what could actually be at play in the gut battlefield of IBS sufferers. Perhaps that’s why the study itself is so confusing. Could they be purposely using smoke and mirrors to make it difficult to dissect their work? Ok. Now the conspiracy theorist in me is coming out. But it does make you wonder.
Its too bad because I do buy into the whole FODMAPs theory, and I, of course, also know that the gluten sensitivity exists. What’s to say they can’t exist simultaneously (at least for some)?
Oh, can’t we all just get along?
As I’ve said before, I believe we may be getting far too deep into the semantics of trying to separate the gluten from the chaff, when we all would really be better off by just avoiding wheat altogether. If there is a silver lining in this study, it may be that perhaps more people will embrace a wheat-free diet and foods that are naturally wheat- and gluten-free, rather than relying on “gluten-free” processed foods, when we still don’t know how safe they are, and often what they’re even composed of. The final point is, if you feel better on a gluten-free diet, and worse when you eat gluten (aka wheat), you have your answer. It’s not all in your head. Here are the facts.
 Biesiekierski JR1, Peters SL, Newnham ED, Rosella O, Muir JG, Gibson PR. No effects of gluten in patients with self-reported non-celiac gluten sensitivity after dietary reduction of fermentable, poorly absorbed, short-chain carbohydrates. Gastroenterology. 2013 Aug;145(2):320-8.
 Hadjivassilou M., Sanders DS, Grunewals RA, Woodroofe N, Boscolo S, Aeschlimann D. Gluten Sensitivity: from gut to brain. Lancet. Neurology. 2010. 9:318-330.
 Volta U., M. T. Bardella, A. Calabrò, R. Troncone, G. R. Corazza and The Study Group for Non-Celiac Gluten Sensitivity. An Italian prospective multicenter survey on patients suspected of having non-celiac gluten sensitivity. BMC Medicine. 2014. 12:85.
 Carroccio A, Rini G, Mansueto P. Non-celiac wheat sensitivity is a more appropriate label than non-celiac gluten sensitivity. Gastroenterology. 2014 Jan;146(1):320-1.
 Vojdani A, T. O’bryan And G.H. Kellermann. The Immunology Of Immediate And Delayed Hypersensitivity Reaction To Gluten. European Journal Of Inflammation. 1721-727 (2008).
 Carroccio A1, Mansueto P, Iacono G, Soresi M, D’Alcamo A, Cavataio F, Brusca I, Florena AM, Ambrosiano G, Seidita A, Pirrone G, Rini GB. Non-celiac wheat sensitivity diagnosed by double-blind placebo-controlled challenge: exploring a new clinical entity. Am J Gastroenterol. 2012 Dec;107(12):1898-906.
 Food & Drug Administration, Office of Food Safety, Center of Food Safety and Applied Nutrition. Health Hazard Assessment for Gluten Exposure in Individuals with Celiac Disease: Determination of Tolerable Daily Intake Levels and Levels of Concern for Gluten. May 2011. p. 32.
 Volta U, et al. 2014.