Did you know that undiagnosed and untreated celiac disease or gluten sensitivity increases mortality? Let’s look take a look at the research.

In a study published in the September 2009 issue of the Journal of The American Medical Association, researchers and doctors found that adults diagnosed with celiac disease have nearly three times the risk of death in the first year following diagnosis compared to the mortality rate in the general population. Over the course of this celiac disease and mortality study (July 1969 to February 2008), patients diagnosed with celiac disease had a 39% increased risk of death compared to non-celiac adults.

Point of Confusion: Mortality Rate Immediately After Celiac Diagnosis

This increased first year mortality may sound confusing. The number likely indicates that many people were diagnosed long after they actually developed celiac disease.

Think of it this way: In the control group, 1 in 1000 people without celiac disease died (from any cause) in this study. In contrast, 2.8 in 1000 people with celiac disease died (from any cause) in the year immediately following their diagnosis. That represents an actual increased mortality rate of nearly three times the general population in just the single year following diagnosis.

However, the percentage of adults with celiac disease who died compared to non-celiac adults decreased over time. The percentage decreased to 39% higher (1.39 out of 1000) than the control group when including the full length of the data collected (July 1969 to February 2008). That includes the first year, so patients who made it beyond the first year only had about a 25% increased risk.

This means that, while celiac patients still had an increased mortality rate compared to the general population, their survival rate greatly increased if they survived beyond the first year after diagnosis.

What this suggests is that many of the people diagnosed with celiac disease probably suffered from celiac disease for several years before they were finally diagnosed. This is not uncommon, as on average, it takes between 5 and 9 years for people with celiac disease to be properly diagnosed. On a personal level… I can’t tell you how much this upsets me. See this post for more on this: Celiac Disease Symptoms Too Often Go Undiagnosed

This is also why I emphasize the need to get an accurate diagnosis right away, in addition to adhering to a strict and healthy gluten-free diet after diagnosis. To help you determine your need for a diagnosis, read my lesson on the symptoms of gluten intolerance, and fill out the celiac disease checklist.

Fear Instills Gluten-Free Vigilance

I hesitate to share such morbid data, but I hope this drives home the importance of receiving an accurate diagnosis and then, if necessary, adhering to a gluten-free diet that is not only strict but vigilant.

Because the study also suggested increased mortality rates for non-celiac individuals suffering from intestinal inflammation, it is not only important you remove gluten from your diet, but that you also take proactive measures to adhere to a low inflammation diet.

Possible Increased Mortality Rate For Non-Celiac Gluten Sensitivity

I’d like to note that this study was compiled and reported before a non-celiac gluten sensitivity was officially recognized (which didn’t happen until March of 2011). So it is possible that a good percentage of the individuals testing negative for celiac disease, but who still had inflamed intestinal walls, were non-celiac gluten sensitive (NCGS), though this is entirely my conjecture.

A portion of the subjects had positive blood tests for celiac disease, but negative biopsies. They labeled those individuals with latent celiac disease, but it’s possible those patients may have had a non-celiac gluten sensitivity. Subjects labeled with latent celiac disease also had a higher mortality rate than the general population, though their risk wasn’t as increased as those diagnosed with celiac disease.

A Healthy Gluten-Free Life Heals And Offers Hope

While multiple studies indicate that mortality rates increase in people with undiagnosed or untreated celiac disease or gluten sensitivity, the good news is that people who strictly adhere to a gluten-free diet are able to return their mortality risk to close to normal. I believe with the increased understanding and improved dietary choices today compared to a decade ago, the mortality rate of diagnosed and treated celiac disease patients would be much lower now than it was over the course of this study (1969 to 2008).

Put simply, yes, gluten intolerance can have severe long-term consequences if left untreated, but for most people, going gluten-free will allow them to make a full recovery. A study conducted in 2010 by the University of Pavia’s Coeliac Centre suggested that the mortality rate of people with celiac disease or gluten sensitivity increased or decreased depending on the amount of gluten they consumed after diagnosis. Be vigilant!

To answer a question I get a lot: If you are diagnosed with celiac disease or a gluten sensitivity, don’t ever cheat and excuse the occasional gluten. If you’re newly diagnosed, I recommend adhering to the Gluten Contamination Elimination Diet for the first three months.