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By Van Waffle


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People with celiac disease have a small but significantly increased mortality rate. The finding comes from the largest study of its kind, which used long-term health records of celiac patients in Sweden between 1969 and 2017.

“Another way of thinking about that is, if you take a hundred people without celiac disease and follow them for 10 years, 91.4 of them will still be alive, as opposed to a hundred people with celiac disease over 10 years, 90.3 of them will still be alive,” says lead researcher Benjamin Lebwohl, MD, Director of Clinical Research at the Celiac Disease Center at Columbia University, New York. Lebwohl’s work on the new study was funded in part by a Young Investigator Award from the Celiac Disease Foundation.


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The study included 49,829 celiac patients of whom 6,596 died during a median follow-up of 12.5 years. They were compared with nearly 250,000 people from the general population. A higher risk was seen in all causes of death combined. With causes separated, celiac patients also showed a slightly but significantly higher risk of dying from cardiovascular disease, cancer or respiratory diseases such as flu and pneumonia.


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"The great majority of people with celiac disease live long, healthy lives. And yet, the fact that we're still seeing the signal, even in the most modern era, says that despite the improvement of awareness, increased diagnosis rates and easier access to gluten-free options, there is still a measurable impact on the ultimate outcome, which is mortality in people with celiac disease."

“What that tells me is that celiac disease is a multi-system condition, and it can impact health in many different ways. There was no one predominant way in which celiac disease caused people to have any shortened lifespan,” says Lebwohl.

To follow up this research, he adds, “We would like to investigate the specific conditions that may contribute to mortality risk. That will involve studying individual cancer types, for example.”

Mortality risk affected all age groups but was most elevated among adults between 18 and 39 years of age. It was highest during the first year after diagnosis yet remained significant even after 10 years of following a gluten-free diet.

A study of this kind could not occur in the United States, which does not have a centralized health system like Sweden, says Lebwohl. While caution is needed in applying data to different populations, lessons from this study about celiac disease management can be adapted to American patients.

“For example, we know from this study and other studies that a substantial minority of people with celiac disease do not have intestinal healing and that’s also the case in the United States. That is likely a consequence of accidental gluten exposure,” Lebwohl says.

Previous smaller studies found no effect on mortality, while a study of 30,000 patients found slightly higher mortality. However, this latest research used data from the largest number of deaths and allowed comparison of patients over decades of gluten-free diet management. It added weight to the finding of a UK study of 1,000 patients showing that mortality risk had not decreased over time. In the Swedish data, increased mortality rate was still seen among those who entered treatment from 2010 to 2017.


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“The great majority of people with celiac disease live long, healthy lives. And yet, the fact that we’re still seeing the signal, even in the most modern era, says that despite the improvement of awareness, increased diagnosis rates and easier access to gluten-free options, there is still a measurable impact on the ultimate outcome, which is mortality in people with celiac disease.”

The study was published in JAMA: The Journal of the American Medical Association. More details can be found here.


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