Many of my patients with celiac disease ask whether it is OK to “cheat” on their gluten free diet.

This study titled “Small Intestinal Histopathology and Mortality Risk in Celiac Disease” just published in the Journal of the American Medical Association shows that patients may be gambling with their lives if they do so.

The study compiled all small bowel biopsies taken in Swedish patients between July 1969 and February 2008. The researchers divided patients into several groups – those with villous atrophy, those with intestinal inflammation (which the study says is equivalent to intraepithelial lymphocytes in Sweden), and those with normal mucosa. Out of 287,586 unique patients who had biopsies, celiac disease was found in 29,148, inflammation was found in 13,446, and the mucosa was normal in 244,992. The researchers also found 3,736 patients with “latent celiac disease” – meaning that they had normal intestinal biopsies and positive celiac disease serology (blood tests).

The researchers then compared death rates between these different groups of patients with death rates from the general population.

For patients with celiac disease (atrophy on biopsy), the risk of death was 39% more than the general population. Patients with inflammatory changes on their biopsies had a 72% increased risk of death, and patients with latent celiac disease had a 35% increase in risk of death.
Patients with celiac disease had a 19% greater likelihood of dying from heart disease, 55% greater likelihood of dying from cancer, 36% greater likelihood of dying from lung problems, and 65% greater likelihood of dying from other causes.
Patients with inflammatory changes on their biopsies were 35% more likely to die from heart disease, 232% more likely to die from cancer, 46% more likely to die from lung problems, and 201% more likely to die from other causes.
There were not enough patients with latent celiac disease (normal biopsies with positive blood tests) to predict cause of death in several categories, but patients with latent disease were almost three times more likely than the general population to die from respiratory problems. Cause of death was also higher in all the other categories, but did not reach statistical significance.

One other interesting thing noted in the study is that risk of death was much higher in the first year after celiac disease was diagnosed and then tended to level off with time. In fact, those with inflammatory changes on their biopsies had a risk of death almost 5 times greater than the general population in the first year after diagnosis. Those with celiac disease had a risk of death almost 3 times greater than the general population in the first year after diagnosis. The researchers believed that this discrepancy may be because the patients were likely to be more ill and have more severe symptoms leading to the diagnosis of celiac disease. Once a gluten free diet is initiated, it can take 1-2 years for the changes to resolve.

There were several interesting things I noted about the study findings.

First, if we add up all the categories, the incidence of celiac disease for patients undergoing intestinal biopsy was 29,148 + 13,446 + 3,736 out of 287,586 total patients. That totals more than 16% of patients undergoing intestinal biopsies in Sweden who had either biopsy or serologic findings consistent with celiac disease.

Second, 1.3% of patients had normal small bowel biopsies, considered the standard for diagnosis in the US, but still had positive serologic tests for celiac disease.

Third, the study shows that celiac disease is more than just a bad reaction to food. Uncontrolled celiac disease causes changes in the body that increase the risk of death. The better that we follow a gluten free diet, the more likely we are to live long healthy lives.

Finally, celiac disease awareness is increasing! See news stories about this study in:
The Los Angeles Times
Medscape
Medpage Today

A .pdf copy of the study can be found here.

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