Can Celiac Disease Cause 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.

The news when it comes to celiac disease and death rates is mixed: some studies, but not all, show people are at risk of dying early when they have celiac.

But 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.

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 Mortality 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 risk for 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 were at diagnosis.

Interestingly, the study also found that babies and toddlers hospitalized with celiac disease before age 2 had a reduced death risk, possibly indicating a beneficial effect of starting the gluten-free diet very early.

Strict Gluten-Free Diet = Lower Death Rate?

Not all the studies contained bad news for us. 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 biopsy-proven celiac disease, and found that poor adherence to the gluten-free diet was associated with persistent intestinal damage, while confirmed intestinal recovery was associated with a reduced death rate.

Cheating on the diet wasn't the only factor involved in persistent 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 unintentional cheating, through gluten cross-contamination in supposedly "gluten-free" foods, could be to blame for ongoing intestinal damage in some celiacs.

So What Can We Conclude From This?

Unfortunately, we can't conclude too much — 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.

Learn more:

Sources:

Hervonen K. et al. Reduced mortality in dermatitis herpetiformis: a population-based study of 476 patients. British Journal of Dermatology. 2012 Dec;167(6):1331-7. doi: 10.1111/j.1365-2133.2012.11105.x.

Lebwohl B. et al. Mucosal healing and mortality in coeliac disease. Alimentary Pharmacology & Therapeutics. 2013 Feb;37(3):332-9. doi: 10.1111/apt.12164. Epub 2012 Nov 28.

Peters U. et al. Causes of death in patients with celiac disease in a population-based Swedish cohort. Archives of Internal Medicine. 2003 Jul 14;163(13):1566-72.

Rubio-Tapia A. et al. Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet. American Journal of Gastroenterology. 2010 Jun;105(6):1412-20. doi: 10.1038/ajg.2010.10. Epub 2010 Feb 9.

Tio M. et al. Meta-analysis: coeliac disease and the risk of all-cause mortality, any malignancy and lymphoid malignancy. Alimentary Pharmacology & Therapeutics. 2012 Mar;35(5):540-51. doi: 10.1111/j.1365-2036.2011.04972.x. Epub 2012 Jan 13.

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