Scary headline? Good. I wanted to get your attention. This is serious and celiac needs to be taken seriously It also needs to be managed. The gluten free diet needs to be maintained and managed. Follow up care with your doctor partner needs to be done to make sure everything okay. So, let’s get into the studies that are over 10 years apart with the same result.

2003

In 2003 a study was published regarding nationwide data in Swedish patients hospitalized between 1964 and 1993. Scientists looked at data from over 10,000 patients who were discharged from a Swedish hospital with a single diagnosis – celiac disease. They found an almost 1.4 higher risk of mortality from all causes. The scientists hypothesize that “The elevated mortality risk for all causes of death combined reflected, for the most part, disorders characterized by immune dysfunction.”

One bright note that should give parents some relief. Children hospitalized with celiac disease before the age of 2 had a mortality risk that was decreased by 60%.

2020

Okay, that was 17 years ago. What about today?

Unfortunately, the data hasn’t changed. Another study looking at Swedish patients diagnosed with celiac disease between 1969 and 2017. The overall mortality rate for those with celiac disease was 9.7 vs 8.6 deaths per 1000 person-years. Doesn’t seem like a big increase, right? And maybe it isn’t, unless you are that 1 person. But there is more!

Also, the greatest risk of dying is in the first year after diagnosis 15.3 vs 6.5 per 1000 person-years. The increased mortality risk persisted beyond 10 years after diagnosis 10.5 vs 10.1 per 1000 person-years. It seems while the risk goes down, there is still a higher risk of dying.

Twenty-four percent of the study group was diagnosed between 2010 and 2017. This is important because this group represents a portion of people where celiac disease is more actively diagnosed and gluten free foods are more widely available. In looking at this group specifically, the mortality risk was likewise present for patients diagnosed during the years 7.5 vs 5.5 per 1000 person-years. So, is the dependence on gluten free substitutes the cause of increased mortality in this group or is it something else?

Thoughts

Why is any of this important? If someone is continuing to have symptoms while on a strict gluten free diet, please talk to your doctor. Don’t ask on Facebook or Instagram, go to someone who knows. Take care of yourself. While the increased risk of mortality might be only slightly higher, it is still higher. We all want to live as long as humanly possible!

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