Dear Gluten: Find Your Own Dating Website!

Stumbling across someone you know on OkCupid is so awkward. Worst of all is when it’s an ex. Your cursor hovers over the profile image until curiosity takes over and you have to click, even though you know you’ll show up in his visitors list, and therefore he’ll know you looked. (Then, you check in every hour to see if he peeked at yours, and, if not, wonder why. Did he not check in? Did he resist temptation? Does he just not care?)

Anyway. Here I am, minding my own love life, and who should I come across but our old friend gluten? Naturally, I looked—and now you can, too. (Click for the full-size version.)

OkCupid dating website profile for gluten

I don’t know what I ever saw in him. I valiantly resisted sending a message, but I did rate his profile 1 star, just to be vindictive. And no, he hasn’t viewed mine.

If you’re baffled, you might want to read my previous letters to gluten here and here. If you’ve read them and are still baffled, I can neither blame nor help you.

Savvy OkCupid users will notice I left out the section on gluten’s favorite books, movies, TV shows, music, and food. I did that on purpose so you can help fill it in! Whaddaya say? Is gluten a rhythm & blues kind of guy?

* “Bready for love” profile photo © Oyvind Solstad | Flickr

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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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If You Give a (Celiac) Mouse a Cookie . . . She’ll Ask If It’s Gluten-Free

I’m starting to get a bit loopy because I still can’t sleep, and it’s been a while since my last sprue redo. So, here’s a children’s book for our generation of rapidly proliferating food allergies and gluten-related disorders—in honor of the one month of the year when we celiac types feel just a bit more comfortable making demands (uh, requests). Enjoy!

If you give a celiac mouse a cookie, she’ll ask if it’s gluten-free.

if-you-give-a-mouse-cookieIf you give her a gluten-free cookie, she’ll gobble it down and ask for a cup of milk.

If you give her a cup of milk, she’ll ask if it’s lactose-free, because her villi are still healing so she can’t produce lactase.

If you give her a new cup of soy milk, she’ll ask if you’re SURE the cookie was gluten-free, because she’s starting to feel a bit glutened.

If you show her the package label, she’ll ask for a mirror so she can check whether her dermatitis herpetiformis is flaring.

When she remembers she never had DH in the first place, she’ll scratch herself all over and say, “But I do feel itchy. Maybe it’s the soy.”

Then she’ll ask for a place to lie down because she feels fatigued. Then pester you for a bedtime story because now that she’s in bed the insomnia’s come on. Then finally drift off and sleep for about, oh, three days.

When she wakes up, if she’s not the smartest celiac mouse, she’ll ask for another cookie.

And since you don’t particularly want any gluten-free cookies yourself, you’ll give her one.*

And here are some cute kids reading the real thing and wondering why the mouse is so demanding. Photo © Matthew Hauck | Flickr

Here are some real kids reading the real book and apparently wondering why the mouse is so darn demanding. (Photo © Matthew Hauck | Flickr)

*No offense intended to the many bakers and manufacturers of delicious gluten-free cookies. In fact, I could go for a delicious gluten-free cookie right now. Couldn’t you?

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Why do we get celiac disease?

I know why I got celiac disease. Do you?

We all have our special origin stories when it comes to why we are the way we are. Humans love to reach back through the strands of our past and attempt to reweave them retrospectively into a narrative we can understand. “X happened, and Y happened, and Z happened” isn’t an appealing way to view our life story: it’s disorganized and random. “X happened, and therefore Y happened, and it all came to a head with Z” is neater and much more satisfying.

So, I know why I have celiac—or, at least, I like to believe I do. I’ve taken all my precious, faulty memories and molded them into a story that makes sense.

My Theory

It’s simple enough: I was born with the celiac gene and lived happily in my glutenous environment, eating whatever I darn well pleased, without so much as a twinge from my cast-iron stomach. Then, I lost sixty pounds in a year, messing with my gut bacteria in ways not even scientists understand. Immediately after I stopped losing and started maintaining, I got sick. Eventually, I learned it was celiac.

To me, the timing is too coincidental to be coincidence. Thus, with no hard evidence whatsoever, I’m convinced: I wreaked havoc on my body’s bacteria, then I gave them some gluten and ruined everything—all in pursuit of thinness. (How many pounds my body has reacquired in revenge is not an important part of the story.)

“But Molly,” you may protest, “I’m a naturally svelte god/goddess who has never actively tried to lose a pound in my life, yet I too have celiac disease. How can this be?”

If that’s so, then after mumbling something less polite, I would thank you for the insightful question, because it leads nicely into the second half of my post.

The Pie Theory

One of the best parts of the recent Columbia conference was Dr. Benjamin Lebwohl’s discussion of causal pies. This is a yummier name for a fundamental principle of epidemiology known as “the sufficient-cause model.” According to it, multiple risk factors for a disease come together in one person, like pieces of a pie. Once the sufficient factors (or ingredients) are there, the person gets the disease.

However, more than one set of ingredients can be combined to make a pie (as any gluten-free baker who has ever had to choose between all-purpose blends knows all too well). Similarly, most diseases have more than one sufficient cause; there’s more than one way to develop them.

For celiac disease to develop, two pieces of the pie must be there: genes (HLA DQ2 or DQ8), and gluten. But by themselves, they’re insufficient cause; almost a third of the US population has the gene and eats gluten, but most of them don’t have celiac. (There could be other universally necessary causes, but no one’s found them yet.) The rest of the pie needs to be filled in, perhaps completely differently for you and for me, with other causes.

causal-pies The other pieces might include:

  • early OR late gluten introduction by parents (which I have complained about before)
  • spring or summer birthday (because you probably started eating gluten in the winter, when infections were going around)
  • microbiotic dysbiosis (messed-up gut bacteria)
  • antibiotic usage (possibly insofar as it contributes to the above)
  • GMOs (but I doubt it. As Dr. Alessio Fasano pointed out, “There are no GMOs in Europe, but we still have celiac disease!”)
  • leaky gut (which Dr. Fasano talks up in his new book, Gluten Freedom)
  • headache medication (possibly because it makes your gut leak; the aspirin-based ones I regularly overused in high school before discovering caffeine are not included here)
  • other autoimmune diseases (though they may in fact be consequences of the same factors as celiac—pies rather than pieces)
  • excessive hygiene (which I’ve joked about before)
  • and so on.

Why all the theories?

It’s important to determine causes of celiac disease not only because humans hunger for coherent life stories, but also because discovering causes could help us prevent, treat, or even cure future cases. This is particularly crucial because celiac disease is increasing in prevalence.

Plus, differently constructed pies may require different treatments. The baking metaphor breaks down a bit here, but we know that some people take longer to heal than others, and that some people must adopt additional measures beyond the gluten-free diet to get well, while others get cross-contaminated regularly with no consequences. Maybe that’s because their identical disease has different causes.

Why do we get celiac disease? (It's all because of pie.)

Original photo of a probably glutenous lemon pie © speedbug | Flickr

Dr. Lebwohl did not make any jokes about a) the gluten content of causal pies, or b) celiac disease being “easy as pie” to develop, so please consider those bad jokes my contribution to the scientific conversation.

Now, it’s your turn to contribute: Why do you think you got celiac disease, or another GRD? Do you have a pet theory about why they are increasing in prevalence?

This is the latest installment in my Sprue/False series of simple but difficult-to-answer questions about celiac disease. (See also Is a Gluten-Free Diet Good Enough? and More on Drugs.) By the way, although “Why do we get other gluten-related disorders?” is a great question too, I focused on celiac because, unfortunately, we’re even farther from answers when it comes to other GRDs.

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