Tag Archives: IBS

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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When is your health like a plugin? – On diagnosis, technical difficulties, and Band-Aids

Is there anything more annoying than technical difficulties? Technology is meant to quietly smooth the course of our daily existence; it’s a fact of life that we take for granted—even ignore entirely—until it starts to go wrong.

Well, maybe one thing: health problems. A healthy body is similar to working technology: it’s a neutral backdrop to our activities, a nonintrusive vessel for our thoughts and cares and aspirations. No one rejoices in their eyesight till they start to lose it. No one revels in their ability to sleep until insomnia strikes. No one praises their guts for breaking down food until the guts themselves break down. I certainly never realized how healthy I was until, one day, I wasn’t.

Once difficulties begin—with our technology or our health—we realize how essential its function was to our former happiness. And so begins the search for solutions. Step one? Diagnosis.

laptop keyboard and stethoscope

What seems to be the problem?
Photo © jfcherry | Flickr

The first definition of diagnosis, according to good ole Merriam & Webster, is “the art or act of identifying a disease from its signs and symptoms” (and for a good read on the “art” of diagnosis, I highly recommend Every Patient Tells a Story, by Lisa Sanders). But the third definition, “investigation or analysis of the cause or nature of a condition, situation, or problem,” is applicable to technology. That’s why you’ll hear IT people toss around the terrifying phrase “running diagnostics.”

Over the Christmas break, I moved my little baby gluten blog from WordPress.com to a self-hosted site, with some pro bono help from my computer-programming big brother. Although I like the freedom that gives me to, oh, throw affiliate links at you (not that I have, yet), there’ve been growing pains: I’ve had to diagnose and fix several technical issues since the transition.

With a self-hosted blog, you’re the one responsible when problems strike. You’re the patient and the primary care physician. Unfortunately, in my case, you’re a rather bumbling one who looks everything up on Google. The most you can hope for is to pinpoint the general source of the problem and refer yourself to the right specialists.

My latest “symptom,” as some of you are aware, arose this week. Several of my old posts—from June, September, and October 2013—were resent to my subscribers. Everyone who said anything about it was very nice—thank you!—but I felt bad about the spam.

Putting on my doctor hat (is that a thing?), I determined the problem was with Jetpack, the plugin that brought all my old subscribers to my new site without their having to resubscribe, which has been overall handy. A “Happiness Engineer” from their support team let me know they were looking into the problem. In the meantime, I could stop the emails by deactivating the plugin.

band-aid on finger, laptop trackpad

I’m also familiar with real Band-aids on my real fingers. I should not be allowed near sharp kitchen implements.
Photo © Tony Kwintera | Flickr

This type of solution—“We don’t know what’s wrong, but here’s a Band-Aid to get you by”—is depressingly familiar to me from my years with a diagnosis of IBS and, unfortunately, continues to be familiar. “Issues that haven’t gone away after nearly a year gluten-free could be connected with celiac disease; they don’t seem to be connected with anything else; and it might help if I try . . .,” etc.

I obediently applied my blog Band-Aid and emailed subscribers that the problem was fixed. Almost immediately, of course, the “deactivated” plugin emailed out yet another post (the robots really are coming for us). That’s familiar, too. Band-Aid remedies don’t work when there’s a deeper, undiagnosed problem.

Eventually, I received another email from Jetpack: “We’ve now fixed the issue. . . . Sorry again for the inconvenience.” Why it’s fixed, or what went wrong in the first place, I can’t say. My blog doctor clearly subscribes to Sigmund Freud’s belief that “The doctor should be opaque to his patients and, like a mirror, should show them nothing but what is shown to him.”

(Note: the word diagnosis derives from diagnoskein, meaning “to know thoroughly.” Generally it’s not just the doctor who gets to know. But Freud’s been wrong before.)

Lego doctor with laptop

The blog doctor will see you now (but you won’t see him).
Photo © Jay Reed | Flickr

Opacity aside, a diagnosis was apparently made, because the fix is in. Subscribers should—fingers crossed—be able to expect no more unwanted emails from my blog (which is why you should subscribe now, if you haven’t yet!).

Granted, if we sustain the health analogy, this is a bit like saying, “The doctors say I won’t keep projectile vomiting at random times without any warning, so you should be able to sit with me at lunch,” but once we’re discussing vomit I’d say it’s time to drop the metaphor, wouldn’t you?

Tell me—which do you find more frustrating: diagnosing health problems, or diagnosing technical problems? Do you find people take their good health for granted? And what’s all this about doctors being mirrors?

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Help me write a letter to my doctor

Last week (erm, two posts ago…gosh, I’ve been lazy) I asked why doctors can’t just talk to each other. I wondered if all my docs could have put their heads together and figured me out faster. The consensus was “maybe, maybe not.”

Photo © Ben Weston | Flickr

Even though celiac disease is associated with a huge range of symptoms affecting virtually every system and function of the body, with implications going well beyond the gastrointestinal, it’s GI doctors who are overwhelmingly responsible for diagnosing it. Other doctors are less likely to be trained in recognizing it, and apparently also less likely to care. (Back in February, Jess of The Patient Celiac posted a selection of anonymous comments on an online doctors forum that included this gem: “Ugh. Is there any disease more boring and worthy of turfing to the GI guys than Celiac Sprue?”)

So although in an ideal world, any of my doctors could have diagnosed me separately or in collaboration (or a supercomputer could have), in the real world it was pretty much down to the one who specialized in intestines to diagnose me.

But she didn’t.

I saw a gastrointestinal doctor for the first time back in December/January of 2011 after half a year of symptoms (my insurance made it hard to see a doctor earlier, since I was in college out of state). In that half a year, I’d had an emergency room visit, I’d tried a strict low-FODMAP diet with no results (besides an initial placebo high that wore off after a week), and I’d worried a LOT.

The GI doc did a colonoscopy but—inexplicably—not an endoscopy or at the very least a blood test for celiac disease. She wasn’t interested in talking about food (turfing it to the dietitian guys, I suppose, though she didn’t set me up with one), and she sent me on my way with OTC meds and all but a pat on the head.

Since I first got my positive bloodwork results, even before I had a fully confirmed diagnosis of celiac disease, I’ve been toying with the idea of calling or writing to this doctor. Now that it’s nearly May—celiac awareness month, as you may be (heh) aware—it seems like a good time to follow through.

What I want to accomplish here is:

1) Tell her my story
2) Understand why she didn’t test me for celiac disease (or, if she did without my being aware, why she never contacted me with the results)
3) Let her know, if she doesn’t, that my particular symptoms are commonly associated with celiac disease
4) Encourage her to test for celiac disease before diagnosing IBS in the future.

What I don’t want to do is:

1) Come off as whiny
2) Come off as condescending
3) Offend her sense of her own expertise
4) Be immediately dismissed
5) Threaten a lawsuit.

Unfortunately, I’m a whiny, condescending, offensive, easily dismissed person prone to making accidental threats. So I need your help!

Have you ever written this kind of letter? Whether or not you have, do you have any tips for me? Any specific things I should say or not say?

Is it better to do this in writing or over the phone (in your opinion or experience)?

Do you feel this kind of patient-to-doctor education is possible and worthwhile? What are other ways to go about it?

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Who’s your favorite children’s book character with celiac disease?

Ah, books. Magical portals all, they give us insight into unknown minds and experiences; they increase our empathy. It’s beautiful. But we also need books whose characters we can relate to and identify with. Books with characters like us.

Where does this leave kiddies (and kiddies at heart) who have celiac disease? Unfortunately, 97 percent of real people with celiac disease go undiagnosed, and the same appears to be the case for book characters—in fact, the rate of diagnosis is even lower. Although 1 in 133 of your Peter Rabbits and Alices in Wonderland may suffer from celiac disease, you’d never know it from skimming your library catalog. And Googling “celiac disease novel” only brings up “Novel perspectives in celiac disease therapy.”

Does this mean there are no celiac characters, though? No! We just need to get out our microscopes. The gluten-wracked protagonists of our dreams are there if only we look deep enough into the bowels of literature.

My favorite is Moaning Myrtle. True, JKR never said she had it, and it’s a little late for a biopsy; being a ghost, she probably hasn’t eaten gluten in years. But, really? Anyone who spends as much time crying in the bathroom as Myrtle does probably has celiac disease.

“Myrtle gave a tragic sob, rose up in the air, turned over, and dived headfirst into the toilet, splashing water all over them and vanishing from sight.”
—J.K. Rowling, Harry Potter and the Chamber of Secrets

You see? Even in death, she can’t escape the toilet.

If it’s not celiac, then it’s colitis, or IBS, or Crohn’s. Details! As they say, we must have heightened suspicion that celiac is present. So, welcome to the club, Myrtle. In truth, I wish we had a little less in common, but I’ll take what I can get.

P.S. Am I missing anyone? Are there actually book (or movie) characters with known celiac disease? I will happily apply my celiac lens to whatever I please, but I would love to know if the “real deal” already exists.

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