Can Celiac Disease Cause an Early Death?

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When you've just been told you've got celiac disease, a serious autoimmune condition, it's common (and normal!) to question the condition's potential effects on your lifespan.

In the vast majority of cases, celiac disease is not fatal in the way we normally think of fatal diseases—it won't progress and ultimately kill you.

However, the news when it comes to celiac disease and death rates is a bit mixed: some studies, but not all, show people are at risk of dying early from other causes when they have celiac.

Still, there's some good news, too: at least one study indicates that people who are more careful in following the gluten-free diet may have a lower risk for early death. That shows you there's something proactive you may be able to do to improve your health and your longevity.

Here's what we know (and what we don't know) about your risk of an early death when you have celiac disease.

Celiac Disease Does Confer Higher Death Risk in Some

A large research project that combined data from 17 different clinical studies concluded that people with celiac disease—including those diagnosed through an endoscopy and those diagnosed simply with positive celiac blood tests—were at a higher risk of early death from all causes, especially from non-Hodgkin lymphoma.

Celiac disease that doesn't respond to the gluten-free diet can progress to a particularly deadly type of lymphoma, so the finding that celiacs have a much higher-than-normal death rate from lymphoma isn't surprising.

Overall, the risk of dying from any cause was only slightly higher than normal—but it was higher.

People whose celiac was severe enough to put them in the hospital seem to fare worse, according to another study.

This study, involving 10,032 Swedish patients who had been hospitalized with celiac disease (meaning they were sicker than most people who are diagnosed with the condition), found a two-fold increase in early death in those patients.

People with celiac, but no other diagnoses at the time of hospitalization (meaning they were sicker than average but less ill than some of the other people included in this study), saw a 1.4-fold increase in the risk of early death.

Death risks were higher in this group for a wide range of diseases, including non-Hodgkin lymphoma, cancer of the small intestine, autoimmune diseases, allergic disorders such as asthma, inflammatory bowel diseases, diabetes, tuberculosis, pneumonia and nephritis (a kidney disorder).

The researchers noted that this increased death risk may be due to reduced absorption of important nutrients, such as vitamin A and vitamin E. Still, when evaluating the results of this particular study, keep in mind that these people were much sicker than most people are at the time of diagnosis.

Interestingly, the study also found that babies and toddlers hospitalized with celiac disease before age two had a reduced death risk, possibly indicating a beneficial effect of starting the gluten-free diet very early.

Does a Strict Gluten-Free Diet Mean a Lower Death Rate?

Not all the studies contained bad news. In fact, two contained hints that following a very strict gluten-free diet could significantly reduce your risk of an early death.

For example, one study found a lower-than-expected death level in Finnish patients who had been diagnosed with dermatitis herpetiformis, a gluten-induced skin rash that's closely associated with celiac disease. The number of deaths should have totaled 110 over the course of the 39-year study; instead, only 77 people died.

In the study, most of those diagnosed with dermatitis herpetiformis also had villous atrophy (which means they had celiac disease in addition to their dermatitis herpetiformis).

There was one major difference in this study population when compared to other research: some 97.7% of those included adhered strictly to the gluten-free diet, possibly because a super-strict diet is the only way to control the unbearable itching of dermatitis herpetiformis long-term.

Other studies have found far lower rates of diet adherence—ranging from 42% to 91%—in people with celiac disease (but not necessarily dermatitis herpetiformis).

The study didn't conclude that a strict gluten-free diet lowers death rates in people with celiac and dermatitis herpetiformis—it wasn't set up to answer that question. However, the authors speculated that a stricter diet may have played a role (and noted that the group's 97.7% diet adherence rate was exceptionally high).

Another study—this one from the Mayo Clinic College of Medicine in Rochester, Minn.—may indirectly back up that hypothesis. The study looked at 381 adults with the biopsy-proven celiac disease and found that those who were extremely careless or who cheated on their gluten-free diets had ongoing intestinal damage. Those whose small intestines had recovered (as confirmed by testing) had a lower death rate.

Cheating on the diet wasn't the only factor involved in ongoing damage and a higher death rate: severe diarrhea and weight loss coupled with more severe intestinal damage at the time of diagnosis also appeared to play a role. In addition, the association between confirmed intestinal recovery and a reduced rate of death was only a weak one, the study reported.

Nonetheless, the researchers noted that ingestion of trace gluten—either through intentional cheating on the diet or because of gluten cross-contamination in supposedly "gluten-free" foods—could be to blame for ongoing intestinal damage in some people.

A Word from Verywell

Unfortunately, we can't conclude too much from these studies—there's a lot more research to be done before we have firm answers on celiacs' death risks and how to improve our odds.

The studies do show a higher rate of early death among people with celiac disease, especially among celiacs who were particularly sick at diagnosis. Non-Hodgkin lymphoma, autoimmune diseases, and infections such as pneumonia accounted for many of those early deaths.

However, one or two studies hint that sticking to a super-strict gluten-free diet (strict enough to heal your intestinal villi or to abolish your dermatitis herpetiformis) may lower your early death risk substantially. Although the studies are far from definitive, this counts as one more good reason to faithfully follow your diet.

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