Can celiac disease lead to death?

In this article, we discuss celiac disease, how serious it is, and whether celiac disease can affect life expectancy.

What is celiac disease?

Celiac disease is an autoimmune disease that affects around 1 in 133 Americans (about 1% of the population).

The condition develops over time because of a sensitivity to gluten, a protein found in certain cereal grains including wheat, rye, and barley, and commonly used in food products including bread, cereal, and pasta.

When a person with celiac disease eats gluten, this causes the body’s immune system to attack its own tissue, damaging the gut lining and preventing the body from adequately absorbing nutrients from food.

Symptoms of celiac disease can range from mild to severe depending on the person, and can include flatulence and bloating, constipation or hard stools, diarrhea or loose stools, indigestion, nausea and stomach cramps.

How serious is celiac disease?

Whether or not celiac disease is serious depends on the person. Some people can experience very mild symptoms, while others may have more severe symptoms and can be very unwell.

People who have celiac disease have an autoimmune response to gluten. This means that when they eat gluten, an immune response is triggered in the body.

This immune response causes damage to the intestinal wall, which makes it harder for the body to absorb important nutrients.

It can also cause some of the unpleasant symptoms that someone with celiac disease may experience (e.g. bloating and flatulence, stomach aches, diarrhea etc.).

If you are experiencing symptoms that could indicate celiac disease, it is important to speak to your physician as soon as possible, for guidance on next steps.

Can celiac disease lead to death? Can celiac disease kill you?

Simply having celiac disease will not kill you.

However, people with celiac disease who are not able to effectively manage the condition by excluding gluten from their diet may experience further complications that can impact life expectancy.

People who have undiagnosed celiac disease, or who have been misdiagnosed as having a different condition, or who have very few symptoms, may also be at risk of developing problems associated with celiac disease if they unwittingly continue to consume gluten.

One example of a complication arising from improperly managed or unmanaged celiac disease is a slightly increased risk of cancer.

However, in a person with celiac disease who has been following a gluten-free diet for 3-5 years, this risk is reduced to the same average level as the rest of the population.

Does having celiac disease affect life expectancy?

Most people with celiac disease will have a normal life-expectancy, providing they are able to manage the condition by adhering to a lifelong gluten-free diet.

Gluten is not an essential part of your diet, so can be safely removed from your diet and replaced with ‘safe’ foods, or gluten-free alternatives.

Continuing to consume gluten when you have celiac disease can lead to complications which, if severe enough, have the potential to lower life expectancy. Complications include:

• Anemia
• Osteoporosis
• Lactose intolerance
• Some types of cancer

If you have symptoms that could indicate celiac disease, speak to your physician as soon as possible, as they will be able to advise on next steps for testing and diagnosis.

Is celiac disease life-threatening?

Celiac disease is not considered to be a life-threatening condition, providing it is properly managed by removing gluten from the diet.

Although the symptoms of celiac disease can range from mild to severe depending on the person, the risk of developing potentially life-threatening complications can be reduced by removing gluten from the diet entirely.

Complications in people with poorly managed celiac disease (which have the potential to lower life expectancy) can include certain types of cancer, anemia, and osteoporosis.

What is the mortality rate of people with celiac disease?

Although a person with celiac disease may develop further complications, this usually only happens if they continue to consume gluten, instead of adhering to a strict, gluten-free diet.

There is conflicting evidence that people with celiac disease display higher mortality rates, compared to the general population.

Some studies have shown that there is no difference in mortality rates between people with celiac disease and control groups (individuals with no celiac disease). However, other studies claim that there is a slightly higher mortality rate in people with celiac disease compared with control groups.

Furthermore, there are many other environmental and genetic factors that contribute to mortality, which also need to be considered.

In general, people with celiac disease who manage the condition properly (by eliminating gluten from their diet) are likely to have the same life expectancy as those who do not have celiac disease.

How is celiac disease treated?

There is no cure for celiac disease, but it can be managed by adhering to a strict, gluten-free diet.

A person with celiac disease must eliminate gluten from their diet for life. This is because eating gluten can cause symptoms to come back, which may lead to long-term damage and other complications.

If you have been diagnosed as having celiac disease, your physician will be able to offer further advice and guidance on managing the symptoms.

How can I reduce the risk of complications and premature death from celiac disease?

If you have celiac disease, it is recommended that you adhere to a gluten-free diet for the rest of your life.

This can help reduce the risk of developing more severe complications that are sometimes associated with unmanaged celiac disease (e.g. anemia, osteoporosis).

It is also especially important to check the labels on any food you buy, as many foods (particularly processed foods) include additives and flavorings that contain gluten. Gluten can also be found in some non-food products including cosmetics and certain medications, so it is important to check those labels too.

While most individuals with celiac disease can tolerate trace amounts of gluten, some cannot, and therefore need to stick to a diet that is completely free of barley, wheat, and rye.

Some examples of safe (gluten-free) foods include:

• Fruits and vegetables
• Meat and fish (not breaded)
• Rice or rice noodles
• Potatoes
• Gluten-free flours (e.g. rice, corn, potato etc.)

Additionally, people with celiac disease can be affected by oats. While oats do not contain gluten, they can sometimes be contaminated by gluten-containing cereals. Oats also contain a protein called avenin which, although safe to consume for most people, can trigger symptoms in others.

Websites like Celiac Disease Foundation have lots of great resources for gluten-free meal ideas and dining out, as well as more information on celiac disease and how to live with celiac disease.

Speak to your physician for further advice and guidance on how to reduce the risk of complications from celiac disease.  

How can I get tested for celiac disease?

If you are experiencing symptoms that could indicate celiac disease (e.g. bloating, flatulence, stomach pains etc.) you should speak to your physician who will be able to provide guidance on next steps for testing and diagnosis.

Diagnostic testing for celiac disease usually includes blood testing for antibodies and, depending on the results of the blood test, a gut biopsy to assess any damage to the gut lining.

However, before undergoing more invasive testing, an at-home genetic test for celiac disease can also be a helpful option for determining whether you are at risk of having or developing celiac disease in the future.

The results of this test can also be shared with medical professionals, which can be useful when trying to secure a diagnosis more quickly.

For $129, an AlphaBiolabs Genetic Celiac Disease Test uses Human Leukocyte Antigen (HLA) typing to confirm or rule out the potential of developing celiac disease by analysing six DNA markers for the HLA-DQ2 and HLA-DQ8 genes.

If the test results show that an individual has one or both genes< (HLA-DQ2 and/or HLA-DQ8), this indicates that they could be at risk of developing celiac disease in the future.

The test results will show either a negative result or that the person is at very low, low, moderate, or high risk of developing celiac disease, depending on which genes they have.

However, it is important to remember that having these genes does not guarantee that a person will develop celiac disease or indicate that they are currently suffering from it.

If the test results show that neither of these genes are present, this means that the individual is unlikely to develop celiac disease in the future.

Last reviewed: 05/09/2023