Are People With Celiac Disease More Prone to Early Death?

Celiac disease is not a fatal condition. But if it's not managed, it can affect your health In ways that put you at risk of earlier death.

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

Celiac Disease and Mortality Risk

There are many health complications of untreated celiac disease that can contribute to an earlier death. Nutritional deficiency and an increased risk of lymphoma are known causes. But there may also be other reasons that haven't yet been clearly defined.

Cancer, Cardiovascular and Respiratory Disease

A large study published in 2020 also found a link between celiac disease and a modest increase in long-term mortality rates. The study followed 49,829 Swedish patients with celiac disease from 1969 to 2017.

Among other things, the researchers found that the increased mortality risk affected all age groups and was most elevated among those between 18 and 39 years old. It was also highest during the first year after diagnosis with celiac disease but remained statistically significant even after ten years.

When the causes of death were examined separately, the patients with celiac disease had a slightly higher risk of dying from cardiovascular disease, cancer, and certain respiratory diseases such as the flu or pneumonia.

The researchers emphasized that most people with celiac disease live long and healthy lives. However, these results may further underline the importance of a gluten-free diet for those diagnosed with this disease. 

Lymphoma

Celiac disease that doesn't respond to the gluten-free diet can progress to a particularly deadly type of lymphoma.

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.

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

Other Illnesses

People hospitalized with celiac disease or with celiac disease and another disease have a lower-than-average risk of recovery.

An older 2003 Swedish study published in the Archives of Internal Medicine found that, among 10,032 people hospitalized for celiac disease, there was a two-fold increased risk of early death compared to the general population. Those hospitalized for celiac alone had a 1.4-fold increased risk of early death.

The risks were highest in those hospitalized with additional 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 type of 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 considering the results of this particular study, keep in mind that the patients were not treated as effectively for celiac disease as people are now.

Benefits of a Gluten-Free Diet

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

Babies and Early Treatment

Interestingly, the Swedish 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.

Gluten-Associated Skin Rash

And one study found a lower-than-expected death rate in Finnish patients who had been diagnosed with dermatitis herpetiformis, a gluten-induced skin rash 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 with 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 45% to 90%—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 percent diet adherence rate was exceptionally high).

Dietary Adherence and Health

Another study—this one from the Mayo Clinic College of Medicine—may indirectly back up the earlier hypothesis.

The Mayo research 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 gluten cross-contamination in supposedly "gluten-free" foods—could be to blame for ongoing intestinal damage in some people.

A Word From Verywell

There's a lot more research to be done before we can have firm answers on celiac disease death risks and how to improve the odds.

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

However, a few 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 substantially lower your early death risk. Although the studies are far from definitive, this is one more good reason to faithfully follow your diet.