Category Archives: Sprue News

Is gluten sensitivity fake? Maybe. I’ll wait while you read the study.

Recently, if everyone you know is anything like everyone I know, they’ve been sending you articles with headlines like:

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 glutena 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.

female scientist with two test tubes

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.

9781615191918That 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?

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Gluten-Related Disorders: Are You Aware?

Are you aware of celiac disease? Silly question, I know. But, of course, some people aren’t. Just yesterday, I “came out” as gluten-free to the high school student I’ve been tutoring since last fall, and she asked, “What’s gluten?”

High school students aren’t the only ones unaware of celiac disease—there are doctors who might have the same question, even if they’re less willing to ask it. For this reason, we have Celiac Awareness Month, beginning tomorrow.

Just to be contrary, though, I’m working on raising awareness of something else: gluten-related disorders. At Columbia’s symposium on Development of Therapies for Celiac Disease, “celiac disease” took pride of place in the conference’s name, even though many presentations focused instead on gluten sensitivity, gluten ataxia, and the possible involvement of gluten in some cases of schizophrenia, autism, and other neurological conditions. Quite a spectrum.

Why wasn’t the conference named “Development of Therapies for Gluten-Related Disorders”? There could be several reasons: 1) It was being put on by Columbia’s Celiac Disease Center, which also hasn’t made the leap to putting GRD in the title; 2) “Celiac disease” still has more cachet as a “real disease” with some doctors and researchers; and 3) The term “gluten-related disorders” is still too new for people to have heard it.

“New” is a relative term. Scientists have been recommending this umbrella term since 2012, yet many still haven’t caught on. As a gluten nerd, I receive Google Alerts on “celiac disease” and “gluten sensitivity.” Nearly every day, some newspaper, magazine, or website comes out with an article that uses outdated terms.

I’m a fan of “gluten-related disorders.” To learn why, check out my latest post on My Life with Food Allergies. 

And if you think the world needs awareness of all gluten-related disorders, please share.

 

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Let’s move! toward awareness of food, fitness, food allergies, and the gluten-free diet (plus a contest for precocious sous-chefs)

I have a big celebrity crush on Michelle Obama. It’s not just her arms (though of course that’s part of it). I also admire the work she’s done to promote childhood healthy eating and exercise habits with Let’s Move! In a (relatively) noncondescending, nonextreme way, the organization has been pushing back against childhood obesity—arguably one of the biggest health issues the United States, among other countries, faces today.

Some don’t believe politicians should get involved with food. But like it or not, by way of crop subsidies, government oversight organizations, and more, they’re involved already. Plus, say what you will about MyPlate (and, as a vegetarian with vegan leanings, I’ve said plenty about that cup of dairy), when it comes to the “food” kids are served and the health education they receive at public schools, we could use a little help.

In a conversation about the initiative, my sister commented that it was annoying how issues of “home and hearth” still seem to fall to the First Lady, in a time when such issues should be equally relevant to men and women. Maybe that’s true. But gendered undertones aside, what Let’s Move! is attempting is important. A campaign to change the food and fitness culture of an entire generation calls for a prominent champion, and Michelle is using her pull to spread awareness about the issue in a way that most people can’t.

Whether or not it’s working is hard to say. I get their newsletter, which means I’m in the bubble, but skimming the initiative’s anniversary highlights is encouraging. In part, I think, due to Obama’s work, policy changes are being made, and large audiences reached. Even the nutrition facts label might get a makeover, and according to the CDC, childhood obesity fell by 43% over the last decade—though tough to tell how much of that can be credited to Obama’s efforts, given that Let’s Move! was only founded in 2010.

Lest you scold me for babbling about my socially liberal heroine on a blog focused on gluten, not politics, I’d argue that a generation of kids learning that what they put in their mouths has a direct impact on their health can only be good for the gluten-free. Children educated about nutrition will be better prepared to care for themselves if food allergies or a gluten-related disorder come their way. Moreover, they just might grow up into a nation of adults who know how to cook, care about food, and value wellness. Again, all good things for them and us.

The reason I’m writing about this now is that (as I mentioned) I receive the Let’s Move! newsletter, and the latest issue put out a call for “all young chefs” to enter the 2014 Healthy Lunchtime Challenge.

It’s a pretty cool contest. Kids ages 8 to 12 work with their parents to create and submit a delicious, healthy, original, affordable, and meaningful recipe. A winning child/parent team from each US state will get to head to DC for lunch with the First Lady.

MyPlateThe recipe does have to be inspired by MyPlate (but the protein and dairy can be vegetarian or vegan, if that’s your thing), but it also has to have a unique story—that’s where “meaningful” comes in. When I read that, I immediately thought, wouldn’t it be cool if one of the winning stories was about learning to cook with a gluten-related disorder or food allergies—facing these obstacles together, as a family, and coming through it stronger? 

Right now, the closest I come to parenting is cooing at babies at the farmers’ market and nagging teenagers to study SAT vocab (which, by the way, is due for a change in 2016). So I thought I’d throw out the challenge to those of you who do have a budding foodie in the family.

If you and your child want to enter, you have until April 5th, and I’ll be rooting for you all the way. A healthy diet is good for us all—and a matter of life and death for some. The food allergic and gluten-free community knows that better than anyone, and our food is darn good, too.

What do you think of the Let’s Move! campaign, MyPlate, the government’s focus on obesity, and the possibly changing nutrition facts label? Will your family be entering the contest?

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Check it twice: A list of gifts NOT to buy for the gluten-free folks you love this Christmas

It’s December! Snow is falling, friends are calling, and ’tis the season for every blogging boy and girl to post their personal Christmas wish lists, disguised as suggestions of what totally unrelated people might want to buy for some other person who happens to be extremely similar to them.

Look around, and you’ll see gift suggestions for fitness freaks (compiled by fitness freaks), tech geeks (compiled by tech geeks), book lovers (compiled by book lovers), home cooks (compiled by home cooks), and the one who has everything (compiled by people who wish they had everything).

And, of course, you’ll see them for the gluten-free, by the gluten-free. Here are just a few sites with intriguing lists of these-are-not-hints for gluten-free kids like me:

I thought about doing a wish list myself, but what good is wrapping paper if you already know what’s on the inside? I’d rather be surprised.

Still, I don’t want to leave my loved ones or yours without any guidance at all. So, to supplement all those other lists itemizing stuff I certainly wouldn’t want anyone to buy for me, I’ve made a list of what NOT to buy for that special celiac someone, at least if you mean to avoid an awkward, awkward Christmas. (Never fear; if you already bought one, there’s still time to make an exchange.)

1. Anything that contains gluten. No, not even as a joke.

angry cat in Santa hat

Santa Cat would find that very naughty.
Photo © John | Flickr

2. While you’re at it, you might want to avoid any kind of food at all. To do it right, you’d have to really get gluten-free, do your research, and commit to heart all of the quirky criteria your personal celiac no doubt has (no oats, no dairy, certified by the NFCA is good but certified by GIG is not, low-FODMAP, feeling worried about arsenic in rice, no GMOs, xanthan gum is the devil, etc., etc.). Otherwise, that gift box will probably be going to the recipient’s coworkers in 2014. And then no one will be happy.

3. Restaurant gift cards—unless you know the person has eaten there recently and felt 100 percent safe and satisfied (or that a LOT of other gluten-free people have). Since even those of us in metro areas have approximately two restaurants like that in our lives, this one’s a toughie.

The lamest possible gift...whether gluten-free or not. Photo © 401(K) 2012 | Flickr

The lamest gift of all…gluten-free or not.
Photo © 401(K) 2012 | Flickr

4. Wheat Belly, by William Davis. Yes, your GF pal has heard of it. But he/she almost certainly considers it a load of reindeer manure.

Wheat Belly cover

5. Grain Brain, by David Perlmutter. Ditto.

Grain Brain cover

6. Bread Butt, by…okay, no one has written this yet. But when they inevitably do, let Amazon keep it.

7. Sketchy supplements, like GlutenEase or Glutenzyme. Though enzymes are being developed (!) that may be able to help in cases of accidental minute exposure to gluten (similar to Lactaid), they’re not there yet, and what’s on the market now doesn’t work. If you want to stuff that stocking with a placebo, sugar pills would be cheaper—and tastier too.

placebo effect

Or, you could just suggest they think about their health some more. That’ll make for some friendly dinner conversation.
Photo © Carmen Rodriguez | Flickr

8. I know I already said “no food,” but there’s one thing I’d like to call out to you especially—and it is with great sadness that I do. Lindor truffles, as I learned recently, contain barley malt, and no Lindt chocolate is guaranteed gluten-free. If you give these, you just might get tears.

angry Santa girl with candy cane

Better watch out, if you don’t want to come face to face with this in a dark corner under the mistletoe.
Photo © Nicola Albertini | Flickr

Want to help prevent a blue, blue Christmas for celiac folks like you and me? Then share: what else would you, as a gluten-free person, not want to find under the tree? (And, if you want to make it easy, share a thing or two that would make you merry.)

Want the elves to package up more posts like this for you? Follow me via Twitter, Facebook, or email, and you can have Christmas two or three days a week, every week.

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