Gluten-Free Guidebook

One of the most popular — and controversial — columns I’ve ever written on this site was just a few weeks ago: “Would You Pop a Pill to Eat Gluten Again?” The responses from readers were passionate and divided. To get a sense of this, take a look at the comments under that post. There were also many people who wrote to me directly to share their feelings on the matter. Here’s what some of them had to say:

“Going gluten-free has opened my heart and mind to a healthier lifestyle both in food and in exercise. I would not take a pill or a vaccine just to eat gluten again. I am healthy and happy, why mess with that?!”

“I would like to have the option to take a pill OCCASIONALLY but probably not on a regular basis, as I am quite pleased with my new diet and the many gluten-free products available.”

“I would NOT go off my GF diet and use a pill. The only exception might be when traveling to locations that are not familiar with this kind of restriction. The other exception might be a wedding or special event where having a piece of cake would be part of the celebration.”

“Since we dine out almost every weekend, I order GF foods (mostly broiled) as much as possible, but I am not always 100% sure it is GF, so it would be nice to have a pill to take for just in case purposes; otherwise, eating GF during the rest of the week is something I would continue.”

There was a response on the comment thread that I found very poignant:

“I’m actually shocked that I am the only [one] that responded saying that I would definitely take a pill to enjoy a meal and not have to ask a million questions about what is in it and how it was prepared. I’m in my late 20’s and having celiac has really taken a toll on my social life. I attend meetings and events almost every night for work and am not able to eat anything. Food is the center of our social get-togethers and it really sucks to ‘be different.’ Even when I do go out to dinner, while everyone else is enjoying warm French bread, I have to sit there and watch. When I go out with family and friends we can only honour where I can eat and I hate putting that burden on everyone else. Yes the diet can be a healthier choice but I would trade in the diet for a ‘normal’ diet that can still be healthy.”

That column was prompted by a story I was interviewed for in Allergic Living. The piece “The Future of Celiac Disease: Celiac’s Next Act,” written by Lisa Fitterman, has just been published in the magazine’s Spring 2010 issue. Unfortunately the story isn’t currently available online (though it may eventually be archived on the Allergic Living website). It’s a terrific, well-researched piece, and I’d encourage you to read it. I was already familiar with the research into the celiac vaccine in Australia and the celiac pill in Baltimore, but I had no idea that researchers at Leiden University in the Netherlands were also working on a pill. It feels like it’s just a matter of time until one is on the market.

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If you’re interested in my crime fiction, I have a couple of new short stories that have just been published. “Fetish” appears in Beat to a Pulp, and can be read online for free. “The Black Widow Club” is in the newly launched Needle: A Magazine of Noir, which is in print only, but can be ordered online.

A couple of weeks ago, I was interviewed for an article in Allergic Living magazine. The story will be published in the summer — and when it’s out, I’ll let you know — but some of the questions got me thinking. The reporter was well-educated about research into celiac disease and about the work that some pharmaceutical firms are doing to develop a pill that would allow a celiac to eat gluten again.

“How do you feel about that?” she asked me. I told her the truth: I find the research intriguing, but I’m not interested in taking a pill that would let me eat gluten.

She was surprised. She rephrased the question. I asked her if she was gluten-intolerant and she said that she wasn’t. I explained that many people have said to me, in the six years since I was diagnosed with celiac disease, how terrible it must be to be on a gluten-free diet. But none of those people were actually on a gluten-free diet themselves.

I actually love the gluten-free diet. I don’t cheat on it. I don’t go to dinner with gluten-eating friends and wish that I could eat what they’re eating. And I don’t miss wheat or the other things I can’t have (seriously, has anyone in the world ever missed eating rye?). It’s true that the gluten-free diet solved many of my health problems, but it did more for me than that. It forced me to reconsider everything I’d been putting in my mouth. Before my diagnosis, I never read a food label. Suddenly I had to, and I discovered that there were a lot of things in processed foods that I didn’t want to put in my body. That’s not to say that I don’t have my indulgences. My favorite food groups are cheese, chocolate, and wine. But most of my meals are made from healthful, unprocessed ingredients.

It’s great news that pharmaceutical firms are taking notice of celiac disease, and there are some clinical trials — like the possible celiac vaccine — that I’m watching with great interest. While I’m certainly in favor of pharmaceutical firms doing research into a pill that would let celiacs eat gluten, I’m not interested in taking it myself. Part of that is simple suspicion: I like to know what the long-term effects of taking any medication are. But part is an unwillingness to go back to the days when I had medications for migraines, mouth ulcers, and other health problems. I love that the gluten-free diet cleared up these problems, and I’m not interested in relying on a prescription medication if I don’t have to.

I’m curious how other gluten-intolerant people feel about this. Are you eagerly awaiting results from the clinical trials? Or would you stick with a gluten-free diet, even if there were a prescription that would let you eat wheat?

Some frightening headlines about celiac disease have been circulating lately. My inbox has been filling up with gems like these: “Study Finds Increased Risk of Death for Patients With Celiac Disease,” “Celiac Disease Raises Mortality Rate,” and the blunt “Celiac Disease Raises Risk of Death.” These stories aren’t coming from fringe sources or anonymous blogs. According to the Los Angeles Times, “Those With Less Severe Symptoms of Celiac Disease May Be at a Higher Risk of Death.”

Talk about media hype.

These reports came out of the same study, which was published by the Journal of the American Medical Association in its September 16th issue. (Unfortunately, the study is only available online to JAMA subscribers; there is a summary from Medscape that’s available from Google’s cache). It was performed by Swedish researchers, who did a retrospective cohort study. In layman’s terms, that means they didn’t track live celiac patients. Instead, they sifted through years of medical data, from July 1969 through February 2008, about deceased persons, and correlated their data with intestinal biopsies performed on patients with celiac disease and/or intestinal inflammation.

The results showed a modest increase in the risk of mortality. Although the researchers acknowledged some limitations (for example, not all of the subjects with intestinal inflammation necessarily had celiac disease, and no adjustments were made for health issues such as smoking or obesity), its conclusions are important — but not in the way that has been widely reported.

Here’s what the headlines should have said: “Undiagnosed Celiac Disease Increases Risk of Mortality.”

What the study demonstrates is a real risk for people who have celiac disease but who have either not been diagnosed with the disorder, or who have been diagnosed but who opt not to follow a gluten-free diet. It is, if anything, an argument for encouraging people to get tested for celiac disease. But I can’t help but wonder if scary headlines will actually make people less likely to get tested. What do you think?