Reporting Accurately on Celiac Disease

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?

2 thoughts on “Reporting Accurately on Celiac Disease

  1. I agree that the headlines were scary, I’m not sure that anyone has committed accurate resources to a study that confirms your reading of the data either. As difficult as it is to cite data that clearly shows a correlation between untreated celiac disease and abnormal morbidity (illness) or mortality, what data shows a correlation between treated celiac disease and normal morbidity and mortality? When is this disease going to be taken seriously so that people get tested, doctors don’t take 8 years to diagnose, and people don’t live in what is likely to be unnecessary fear? Funding for studies is critical.
    Thank you for all you do,

  2. A agree with you Neal. I believe that undiagnosed Ceciac disease will increase your likelihood of illness and mortality. But how much is unsure.

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