Gluten-Free Guidebook

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?