Tag Archives: FODMAPs

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?

Advertisements
Tagged , , , , , , , , , , ,

More on drugs: Big questions and non-answers about celiac disease medication development

My first post about Columbia’s celiac disease symposium was heavy on snacks, light on facts. That’s partly because, as I mentioned, many facts are undiscovered. But also, under the residual influence of my sugar high, I got a bit carried away and didn’t make space for what I did learn.

The comments on that post made it clear I’m not the only one interested in medicating my symptoms into oblivion, and just as clear that many have serious reservations about the idea. So, I thought I’d circle back to a few more questions about the celiac disease medication options being developed:

What non-drug options exist?

Many of us have ongoing symptoms. But that doesn’t mean we all have non-responsive celiac disease or the dreaded refractory CD, and it doesn’t mean we all need medication.

In some cases, symptoms are not due to celiac disease, but to coexisting autoimmune diseases or other conditions (e.g., small intestinal bacterial overgrowth or “leaky gut”). These conditions may have been triggered by your celiac disease, the trigger for your celiac disease, or just coincidence: a sign of your good luck. In any case, if you have another issue, you have to treat it; various options exist.

In other cases, modifying your diet even more can help. You may be inadvertently consuming gluten. You may have other sensitivities—most commonly lactose intolerance—or allergies. You may need to go low-FODMAP (more on that to come). And you need only glance at the “new and popular” gluten-free cookbooks on Amazon to see how many GF people are deciding to go paleo.

Interestingly, several bigwig doctors at the conference claimed to have no idea what paleo is. A fellow attendee asked about it, and they shrugged the whole thing off as a passing fad beneath their attention.

Banksy caveman with burger and soda

Banksy doesn’t know what paleo means, either. But he’s not my doctor.
Photo © Lord Jim | Flickr

As a vegetarian, I’m far from espousing the paleo diet, but I find the doctors’ cavalier attitude absurd, considering how many of their own patients must be going paleo, and the diet’s striking similarity to the “gluten contamination elimination diet” that has demonstrated success in one small study, in which over 80% of patients with ongoing symptoms became symptom-free.

Both diets require cutting out grains, legumes, and processed foods. What sets them apart is philosophy: paleo is about changing your diet for life, with the idea of eating the way we evolved to eat; the GCED is about restricting your diet for a limited time to target a specific issue. (In the study, many participants returned to a “standard” gluten-free diet after six months, without new symptoms.)

In my opinion, both diets, as well as their offshoots (e.g., The Wahls Protocolshould be of interest to doctors engaged in treating patients with non-responsive celiac disease. But at the conference, inexplicably, no one addressed them. So if you were wondering what we know about going grain-free, the answer may as well be nothing. 

Anyway. Back to drugs. Who needs them? 

Well, we can say who doesn’t: anyone without lingering symptoms, anyone with symptoms who has already found a solution, and anyone who feels the symptoms they have aren’t worth the trouble of taking a pill.

Even when drugs are available, it’ll be your right to be suspicious of them, and certainly your right not to take them. But consider this: the main arguments against taking medication are:

  • expense—but the gluten-free diet is expensive, too
  • hassle—but the gluten-free diet is a hassle, too
  • dependence—but we’re all dependent on the gluten-free diet already
  • side effects—but the diet has those, too:

As for medication side effects—who knows? But the drugs currently being developed are meant to target gluten, not the body, so their side effects may in fact be less severe than those of the diet. Not many things affect us on more sides than diet does.

For those of us who want them . . . when can we get them?

The panel of reps from Glutenase, Larazotide, and Immusan-T, gave some very slippery answers to this question: “no way to know”; “too many variables”; “developing a drug is a marathon”; and so on.

The moderator, much to his credit, insisted on pinning them down: “Assuming things go reasonably—not miraculously—according to plan, when can we expect these drugs to hit the market?”

One drug representative gave a very flip answer to this question (perhaps indicating a lack of confidence in his ability to answer it). Another seized this opportunity to lean forward and intone, directly into the mic, “Three years.” That set the bar: the other two grudgingly agreed that three to five years should do it.

That’s not so far off (!), but we do have some time to decide whether we want to take medication in addition to our diet.

Why not talk about it now? What worries you about drugs? What doesn’t? What else have you tried or are you thinking of trying? And why don’t docs care about cavemen?

Tagged , , , , , , , , , , , ,

Have yourself a non-awkward little gluten-free Thanksgiving, Hanukkah, and Christmas

Holidays are beautiful. They’re a chance for people to come together, set aside their everyday concerns, celebrate the passage of time, stuff themselves silly, and play a lot of board games (at least, that’s what I like to do at the holidays). They’re full of traditions, generosity, outpourings of love, and other great stuff.

But they can also be awkward. Even if you love and get along with the folks with whom you celebrate—as I do—there’s plenty of room for a little holiday tension. Stuff like:

  • Your date to the office party ditches you to hang out with your coworkers.
  • The dinner conversation turns to your future offspring’s religion.
  • The traditional pudding the vegetarians just ate turns out to contain suet.
  • Your entire extended family finds out you’ll be prepping for a colonoscopy the following week.

No, I’m not speaking from personal experience.

Pretty cool! Till you learn what's in it. Photo © Steve Johnson | Flickr

Pretty cool! Till you learn what’s in it.
Photo © Steve Johnson | Flickr

Food restrictions make holidays more awkward. It’s hard to confidently strike the balance between ensuring enough of your needs are met that you don’t pass out in the buffet line (and maybe even have fun), and not making those needs the focal point of everyone’s attention for the whole party. The perfect balancing point differs depending on who you are, who you’re spending your holiday with, and how you celebrate it. I can’t tell you where yours is, and, more’s the pity, you can’t tell me where mine is. We all just have to struggle our way through it, fingers crossed and awkwardness accepted.

But to tell the truth, I don’t feel too nervous about my first-ever gluten-free Thanksgiving and Christmas (and first-and-only-ever Thanksgivukkah*—GF or not, I don’t think any of us will live to see the next one).

That’s because, for one thing, it’s not my first family get-together since celiac disease (this was), or my first holiday season with “dietary issues.” For a couple, I’ve been vegetarian; for one miserable Thanksgiving, I considered myself “severely fructose intolerant” (to the point of eating almost nothing but meat, potatoes, rice, and spinach); and last December, well before my celiac tests, I found myself asking, “Can we sub in buckwheat groats for a low-FODMAP option?”

It’s also because I have an understanding family, and because I’ve started discussing the holidays with them already. Now, I know I said that I can’t show you your perfect balance point, but if I could offer you one piece of advice, it’s this: start looking for it early.

NFCA gluten-free holiday tip of the day

The NFCA is posting a daily tip, like this one from ME, throughout the holiday season. They can all be found here.
Image © National Foundation for Celiac Awareness

This is advice I need to learn to take, myself. I’m prone to putting off conversations that I anticipate will be awkward. It’s a bad habit, because inevitably, the putting-off makes the conversation more awkward when it finally happens. If you’ve ever waited until the last possible second to break up with someone, or fess up to a mistake you made, or ask for a day off, I’m sure you know what I mean.

Even if you’ve done this a million times and are totally comfortable both with your food restrictions and with the folks who will be carving your turkey, it’s still worth checking in with them now. Think about it: If you wait to discuss bringing a special dish until your host has already drawn up the oven schedule for the side dishes, they’re not going to feel very grateful. And Christmas Eve is not the time to heave a sigh and wish that someone had adapted that family sugar cookie recipe. Even if you’re not a planner, now is definitely the time.

Have the awkward conversations now, so you can enjoy yourself later. And if things still get awkward, remember that, after all, holidays aren’t really about the food. They’re about the board games.

Christmas Scrabble game

Bingo.
Photo © Mart | Flickr

Have you started preparing for the holidays? Are you hosting or guesting? And if you’ve been through this wonderful, awkward season of joy with food restrictions before, will you be doing anything differently this year?

*My family is as gentile as they come, but we’ve always celebrated Hanukkah. Why not? Mom likes lighting candles, Dad likes making latkes, and we all like playing dreidel. When it comes to holidays, I say gimel.

Tagged , , , , , , , , , , ,
Advertisements
%d bloggers like this: