Recently, if everyone you know is anything like everyone I know, they’ve been sending you articles with headlines like:
- Your Gluten Sensitivity May Be In Your Head
- Gluten Intolerance May Be Completely Fake: Study
- Your non-celiac gluten “sensitivity” is probably not a real thing
- Is Gluten Sensitivity Fake? Maybe, We’ll Wait While You Eat A Bagel
- Report: You’re Not Sensitive to Gluten, Dummy
- Self-Diagnosed Gluten Intolerance FAKE?
- Gluten Sensitivity is Apparently Bulls**t
And, if you’re anything like me, you’re pretty annoyed about it.
The study itself focuses on non-celiac gluten sensitivity (NCGS). Peter Gibson and the other authors of a milestone 2011 study providing evidence for NCGS decided to check their results. They’d found no reason why gluten would cause digestive symptoms for non-celiac people, so they wondered if something went wrong in their first study—if there were confounding variables.
In their new study, they strove to control for those variables and wound up finding “no evidence of specific or dose-dependent effects of gluten in patients with NCGS placed diets low in FODMAPs.”
Unfortunately, no one is actually reading the study.
Most of the above “articles” don’t link directly to the study (which can be found here and, by the way, came out many months ago). Instead, they link to a write-up at Real Clear Science, suggesting that’s all they read. Real, clear, and scientific though that write-up may be, it is not enough to get the whole picture, especially if one reads it selectively.
Had writers taken time to learn something before jumping on the trending topic, the headlines may have been different. Or maybe not. After all, we clicked on them, didn’t we, and isn’t that the point?
The articles feature scant information, laughable errors, and a hearty, triumphant whiff of “I TOLD you nothing was wrong with you”—missing what the researchers take as a given: something is wrong. It just might not be gluten.
Now, one study does not overturn all the other research that’s been done on NCGS. Rather, it introduces doubt—and an opportunity to provide people with better treatments for the pain and discomfort they do indeed experience.
Since no one is bothering to read the study, here are some key points:
The 37 participants:
- did not have celiac disease or other gastrointestinal diseases
- did have symptoms of IBS fulfilling Rome III criteria
- felt their symptoms improved with a gluten-free diet (though for some, the diet hadn’t helped 100%)
- were not asked about extra-intestinal symptoms (other than fatigue and sleep)
Like Jenny Craig, the researchers provided three meals a day, which were:
- low-FODMAP (that’s an acronym for fermentable oligosaccharides, disaccharides, monosaccharides, and polyols—carbs that can cause digestive distress, and are found in wheat/rye/barley, among other foods)
- dairy-free (you got this one)
- low in “food chemicals”
- keyed to caloric needs but otherwise identical
- probably not that tasty
After establishing a baseline, the researchers mixed a little gluten, a lot of gluten, or a placebo into the meals. The trial was double-blind (so no one, including the researchers, knew who was getting what when) and cross-over (so participants spent some time eating each of the three kinds of meal).
The placebo was:
- lactose-free whey protein
- indistinguishable from the gluten in taste and texture
The results:
- Participants all felt better on the baseline low-FODMAP diet (compared to their previous GF diet).
- Some participants felt worse on the gluten-containing diets . . .
- But a similar number also felt worse, to a similar degree, on the placebo-containing diet, pointing to a “nocebo” (negative placebo) effect.
The researchers’ conclusions:
- “NCGS, as currently defined, might not be a discrete entity.”
- FODMAPs may be the primary issue, or gluten might cause symptoms only in the presence of moderate FODMAPs.
- The gluten in this study might have been different from the gluten in the first study and thus had different effects.
- NCGS may cause mostly neurological, mood-related, and other non-digestive symptoms.
- More research is needed!
Of course, the click-me-click-me articles don’t get far beyond bullet point #1. As such, they aren’t worth getting worked up over, though that hasn’t stopped me from practically combusting every time a friend broaches the topic. People are finally paying attention, and in all the wrong ways. It drives me bonkers.
The comments are, if possible, worse.
Many of them seem impervious to new ideas and scientific developments. “Of course gluten sensitivity is real,” they bristle, “and I’m proof.” They reel off symptoms they once felt, spinning miraculous recovery tales. Though I’m glad they feel better, by dismissing scientific inquiry, they reinforce stereotypes of the gluten-free community as irrational and dogmatic.
It’s understandable folks feel attacked. No likes to be told they’re wrong, especially in the bald, provocative terms of these headlines. In particular, no one likes to be told our symptoms are psychosomatic. We don’t appreciate the idea that we aren’t in perfect rational control. It sounds like an implication of stupidity, attention-mongering, or craziness. I get it: I’ve been through the “you must be stressed” talk. I’ve been prescribed anxiety medication. I’ve left in a huff.
But the placebo/nocebo effect is well documented. It may make us uncomfortable, but writing it off won’t get us anywhere. Psychosomatic symptoms aren’t “all in your head”—that’s the point. They start in your head, but they affect your body, too, in very real ways. (Of course, when other illnesses are misdiagnosed as anxiety or depression and therefore mistreated, that is no good.)
Sometimes, people expect to feel glutened, and so they do feel glutened—gluten or no gluten—whether or not they have a gluten-related disorder. In this study, it happened. That’s not all there is to know about NCGS, but it demands recognition.
Just a screenful of Legos to help the placebo talk go down
Photo © Maia Weinstock | Flickr
Other commenters rail against the study’s authors’ “obvious bias” or claim it was “funded by the wheat industry,” coming off as paranoid and histrionic. Yes, the study authors are closely involved with researching the low-FODMAP diet, which introduces some bias—but it also means they’re passionate and educated about the topic and, therefore, well suited to research it.
Disclaimer time
I too have a horse in this race. I edited Sue Shepherd and Peter Gibson’s books, The Complete Low-FODMAP Diet and The Low-FODMAP Diet Cookbook (the latter of which you’ll see on shelves very soon!). So, increased attention to FODMAPs benefits me, at least indirectly.
That said, I was a believer before the books ever crossed my desk and before I worked at The Experiment. Working on the books, learning the science behind them, and reading positive reviews by those who have tried the diet have only deepened that belief. I wish that articles would focus more on promoting this revolutionary treatment (to my knowledge, the only evidence-supported diet for IBS) and less on dissing another.
The low-FODMAP diet doesn’t work for everyone (its success rate is about 75%), just as a gluten-free diet doesn’t work for everyone. It may be the GFD works for even fewer people than we previously suspected—and if that’s the case, shouldn’t those who currently consider themselves gluten sensitive want to know, so they can feel even better?
My guess? There’s room for both diets. And there’s plenty of room for more research.
What’s your take on all the hullabaloo? Have you turned up any really good reporting on these issues? Would you be interested in more posts about FODMAPs down the line?
Based on a Sprue Story 
Even if you do “have a horse in the race,” I think you did a wonderful job summing up the research AND the comments section. I don’t have NCGS, just celiac, but before I was diagnosed, they had me keep a food diary and eat what was making me feel better. Well, away went the orange juice, lemonade, salsa, etc. And, in stayed the wheat bagels. (They were my favorites). It may sound ironic, but it’s because my celiac led to acid reflux, which the wheat bagels didn’t bother. So, yes, we do know our own bodies (and you may know yours better than I know mine), but sometimes we may be misled to the real culprit. I do hope that research continues in the NCGS field, and that people are open to it. And, I most certainly wish the media would stop sensationalizing gluten, but that’s unlikely to occur. Great job again!
Thanks for your comment and sharing your story! That makes a lot of sense since celiac’s effects are long-term and inflammatory, but is definite non-intuitive. How did you wind up figuring out what the real problem was?
(By the way, I certainly don’t know MY body better; one of the first things I did when I got sick was an extremely ill-advised elimination diet very much reinforced by what I now think was probably nocebo all the way down. And today, I regularly start to get stomach aches the first moment something seems slightly suspicious when I’m dining out. Since they rarely last more than minutes or a few hours at most, I’m pretty sure it’s not really evidence of gluten contamination.)
Very interesting summation! I’ve been out of the loop on the whole controversy because of my wisdom teeth surgery (ain’t no deep thinking going on with those drugs in my system!), but you summed it up very well. It is definitely interesting how much the food and our own beliefs affect how we feel. Funnily enough, before I was diagnosed, I kept having my mom cook me chicken and rice because that was the only thing that helped calm my tummy!
Great article though and thanks for summarizing it for me! 🙂
Thanks, Casey! Guess following your gut was the way to go, in your case. Hope you’re feeling recovered by now and enjoying the end of your “spa week.” 🙂
Thanks for opening a discussion about this. I do wonder…the baseline diet that the subjects started on was dairy free, yet the placebo (meant to be innocuous and gluten free) was whey powder, which although it was lactose free, would have been very high in casein, which can cause a lot of problems for some people aside from/in addition to gluten. Perhaps some or all of the placebo subjects were having legitimate reactions, just not to gluten, during this study.
That’s a really good point. The researchers did actually address it:
“The results from the 7-day trial suggested that whey protein itself might have triggered symptoms in some patients. However, the effects of whey protein independent of gluten were not reproduced in the 3-day rechallenge.”
Apparently just one participant of the 37 had consistent reactions to the whey protein. That said, as most people with chronic digestive conditions will attest, gut reactions are not always consistent! So it’s possible that was more of a factor than the quote makes it sound like.
Also, side note/tangent: I want to say that it’s my firm belief that regardless of their trigger (psychological, food-related, or what-have-you), all of the reactions were “legitimate” in the sense that they demonstrated real discomfort/pain. It’s a big problem that patients think they’re being told their symptoms are illegitimate when it’s suggested psychological factors may be at work, and I’ve read that many doctors do at least subconsciously consider them less legitimate—but I don’t.
(I don’t think you were actually writing off any of the reactions as “illegitimate” in that sense—you meant legitimate in terms of giving good study data—but just want to make my position clear.)
Great job explaining the study! I did click through to read it, but didn’t make it all the way through. I also like your graphics and captions!
Thanks! I forgive you for not reading the whole study as long as you don’t intend to write a purposefully inflammatory article about it on the internet. 😉
I just bookmarked the study to read this weekend (woo! Holiday reading!). Somehow I missed a lot of the controversy, too, but I think it was just that I wasn’t online all that much this week.
I’ll be interested to see the study results, though, and I linked to it (and you) because it’s important to have sane, calm, scientific discussions, even about ourselves.
(Also, as a side note, I think so many people, but especially women, with digestive issues spent years being ignored, disregarded, or being told “it’s all in your head” that we all get a little touchy at any indication that we’re being written off or being taken less seriously. That particular psychological factor should also be considered, as well as the toll that anxiety can physically take on the digestive symptom.)
100% agree on all of this, and think you for the link! I think doctors have a lot to answer for when it comes to the psychological harm their poor “bedside manner” has caused. Of course, the healthcare and med school systems have a lot to answer for when it comes to cutting down on “soft skills” education and time given to each doctor’s appointment, so who knows where the blame can really be placed.
[…] then, my friends and family don’t spend a lot of time sending me quippy internet articles. Molly does a great round-up of the actual science behind the headlines, but also provides a link to the full study. I […]
Hi, Molly; thanks for your response. I didn’t mean to imply illegitimacy of anyone’s reactions. I myself am gluten intolerant, and have to use a lot of caution with dairy proteins. My mother is diagnosed celiac, and I had severe, persistent symptoms that lead my endocrinologist to instruct me to go off gluten without waiting the several months it would have taken to get a diagnosis through referral to a specialist. The results were conclusive that gluten was problematic. I am very glad for the continued efforts of scientists to seek answers to this issue, and am always shocked by the hostility of some who simply choose to scoff and dismiss this issue, and how it affects those involved.
I didn’t think you meant to. Just pontificating as usual. 🙂
I really appreciate you sharing your story and totally agree. I think that healthy people have a really hard time understanding what it’s like to be sick day in and day out, so to some extent I try to give them the benefit of the doubt when they scoff. I think there was probably a time when I was less sympathetic to chronic suffering too because I just. Didn’t. Get it. Until it happened to me, of course. That said, not having gone through something is really not a good excuse for dismissing it when other people are. Too bad people can’t just be nice.
Hi Molly,
Thank you so doing such a great job of summarizing not only the initial study, but also discussing all of the controversies.
I, for one, have been very intrigued by the power of the placebo/nocebo since reading Lissa Rankin’s Mind Over Medicine next year.
When we hopefully have an actual biomarker for NCGS (which Fasano and crew are actively working on), it will be interesting if this study can/will be replicated on a larger scale.
There has been a little research showing that wheat anti-trypsin inhibitors (ATIs), another component, may actually be the culprit in gluten sensitivity. In some of the European papers they have decided to call the diagnosis wheat sensitivity instead of NCGS.
Hope you have a great weekend!
Jess
Thanks for your comment, Jess! I haven’t read Mind Over Medicine but now it’s on my to-read list. My favorite tidbit, which you’ve probably come across too, is this study that showed people may feel better even when they KNOW they’re taking a placebo.
I’d be very curious to see the study re-tried on a larger scale and am also watching and waiting for Fasano et al’s future work. Thanks for pointing that out about ATIs/wheat sensitivity. It’s a bit funny how much effort goes into just figuring out what to call all of this stuff, but I guess it really is important!
A good post on the Gibson study and the media fail it begat. I’m still not sure though why it took the media a full year to start covering it. Usually with such impactful health news the popular press is on it within a few days at most. Also, while we harp on the media fail, we should perhaps acknowledge when they get it right.
There were tons of misleading headlines as your bullet list highlights, mostly along the lines of either “X doesn’t cause Y, so Y doesn’t exist” or less directly “X doesn’t cause Y”, which leaves the reader the impression Y doesn’t exist. The headlines should have been more to the effect of “Y exists, but not necessarily because of X”. This is a big deal to me because most people won’t even bother clicking on the headline to read the story where it *might* offer a truer picture; they only read the headline and move on.
The only example of this latter style of headline I’ve seen so far is from Gizmodo: “Your ‘Gluten Intolerance’ May Actually Be From Something Else in Wheat”.
http://gizmodo.com/your-gluten-intolerance-may-actually-be-from-somethin-1580781192
John, I too am baffled about the long delay. It seems to me that the Real Clear Science article was the first “major” popular media hit, and everyone else jumped on it after that. Because of my close involvement with the FODMAP books, I knew about the study a long time ago and had given up hope that the media would ever cover it at all. Now that they finally have, I wish they’d stop! Ha.
Your example headline is a good one. Recently I’ve started to see a little more coverage, including an NPR blog, focusing less on “gluten sensitivity is fake!!!1” and more on the positive finding that a low-FODMAP diet may help people who are gluten-free but aren’t seeing complete symptom resolution from it.
I have not been formally tested for celiac but my doctor and I agreed that something in wheat doesn’t agree with me. I tried eating tons of FODMAPs (besides gluten) after reading this study to evoke a reaction but it didn’t. Should I eat pure gluten to test? I of course would only eat a VERY small amount, is that a bad idea? Or should I gluten challenge and test? I have a family history of biopsy confirmed celiac disease. I have acid reflux, GI problems, headaches, joint pain, severe bloating (I look like I am about to give birth) when I eat wheat products. I am fairly sensitive to cross contamination. What should I do?
Hi Brittany, I’d say that’s a question for you to answer for yourself (with advice from your doctor). It’s such a personal decision. A few things that might help you in thinking about this are:
1) The study was of people on gluten-free diets who still feel some of their original symptoms. If you eat gluten-free and are feeling totally better, from where I’m standing, there’s no real reason to change anything—unless following the GF diet is significantly affecting your quality of life or something like that (understandable!).
2) IF you are still having symptoms and want to find a better treatment plan, or IF you would like to get formally tested for celiac disease, my understanding is that it’s extremely rare for those with gluten-related disorders to have long-lasting/life-threatening consequences from short periods of eating gluten. From that perspective, there’s no reason not to go ahead with a gluten challenge. Of course, you might feel very bad, and you might be looking at missing school, work, or social activities, and all that should probably factor into your decision.
I know there’ve been studies about increased risk of certain cancers for non-gluten-free celiacs, but the risk is still very very low, and I think it’s tied to people who have been eating gluten for years and years, not people who do a six-week gluten challenge (though of course that hasn’t been specifically studied).
3) FODMAP is an umbrella term for several different kinds of carbs, and everyone’s body reacts to them differently. Some people are sensitive to all FODMAPs; some people are sensitive to just some of them. Fructans are the main FODMAP found in wheat/rye/barley products, as well as in onions, garlic, artichokes, and some other foods. It’s possible you’re sensitive to fructans, but not to other FODMAPs. Without knowing what you tested yourself with, it’s hard to know whether this is part of the problem.
4) It could be something else in wheat beyond either gluten or fructans that is causing you problems (see Jess’s comment above). However, if that’s the case, it’s really a question of semantics. Either way, you’d still need to avoid wheat.
I hope that’s at least a little helpful (and maybe someone else here with an experience similar to yours can give you more specific advice). Good luck!
Over the course of my freshman and sophomore years of high school (2009-2010), I developed an array of symptoms including anemia, loss of appetite, weight loss, and painful tingling sensations in my hands and feet. My doctor suspected celiac disease, but both the blood tests and endoscopy were negative, as were tests for dozens of other things. I was essentially told it was a fluke and that I no longer needed iron pills, but I became anemic again within a few months. I have pretty much been sitting on the border of normal ever since, fluctuating between being barely within normal range and slightly anemic with no rhyme or reason.
This winter, I met someone with NCGS. I had never heard of being gluten-sensitive without having celiac and was curious about it, so I naturally did some research. NCGS seemed like a reasonable answer because it explained all of my symptoms, why they appeared at approximately the same time, and why they had persisted. On top of that, my doctor had thought it was celiac, and that was before NCGS was as widely recognized as it is now. I decided that it was worth a shot, so I went gluten-free this past February.
The first month I felt better than I have felt for a long time. My appetite came back in full force, and I had GI symptoms resolve that I hadn’t really even realized I was having because they had been so normal to me. I did have an adverse reaction after unknowingly eating gluten my first time eating out. In hindsight, it also explained why my appetite had increased some upon beginning college this fall (when my eating patterns changed and I happened to significantly reduce my gluten consumption without realizing it at the time) and why it had disappeared again on Christmas break (when I resumed my cereal eating, sandwich eating, etc.) Since that had been entirely unintentional and before I even had any idea what NCGS was, I figured it couldn’t have been a placebo or nocebo. If you would have asked me that first month if I had NCGS, I would have responded strongly with a yes.
My appetite has remained and my iron levels are comfortably within normal range, but my GI symptoms have returned, slightly worse even than they were before. I’ve cut out dairy upon my doctor’s suggestion (although that was only a few days ago, so I’m not sure yet if it’ll help), I’m considering trying low-FODMAP, and I’m highly suspicious of an acne medication I started taking about the same time these symptoms came back. Now, I’m not sure if I can confidently say I have NCGS, but what I can say is this: There is something wrong with my body that is in some way related to foods that contain gluten, even if it may not be related to the gluten itself. It may be related to other foods as well, but figuring out which ones will only come after much experimentation and patience.
Well, this comment was longer than I intended 🙂
[…] An expanded version of this post originally appeared on Molly’s personal blog. […]
[…] Like another infamous study, it’s placebo controlled (and double blind), so you won’t necessarily get the drug, and either way you won’t know. You also have to show ongoing intestinal damage in the first endoscopy to be given the drug or placebo. But IF you get the drug, and IF it works, THEN your quality of life might improve. […]