Can coeliac disease kill you?

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

What is coeliac disease?

Coeliac disease is an autoimmune disease that affects around 1 in 100 people in the UK

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

How serious is coeliac disease?

Whether or not coeliac 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 coeliac 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 coeliac disease may experience (e.g. bloating and flatulence, stomach aches, diarrhoea etc.).

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

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

Simply having coeliac disease will not kill you.

However, people with coeliac 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 coeliac 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 coeliac disease if they unwittingly continue to consume gluten.

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

However, in a person with coeliac 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 coeliac disease affect life expectancy?

Most people with coeliac 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 coeliac disease can lead to complications which, if severe enough, have the potential to lower life expectancy. Complications include:

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

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

Is coeliac disease life-threatening?

Coeliac 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 coeliac 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 coeliac disease (which have the potential to lower life expectancy) can include certain types of cancer, anaemia, and osteoporosis.

What is the mortality rate of people with coeliac disease?

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

According to the National Institute for Care Excellence (NICE), there is conflicting evidence that people with coeliac 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 coeliac disease and control groups (individuals with no coeliac disease). However, other studies claim that there is a slightly higher mortality rate in people with coeliac 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 coeliac 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 coeliac disease.

How is coeliac disease treated?

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

A person with coeliac 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 coeliac disease, your GP 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 coeliac disease?

If you have coeliac 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 coeliac disease (e.g. anaemia, osteoporosis).

It is also especially important to check the labels on any food you buy, as many foods (particularly processed foods) include additives and flavourings 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.

It is the law in the UK that any food labelled as gluten-free must not contain any more than 20 parts per million (ppm) of gluten.

While most individuals with coeliac 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 or battered)
• Rice or rice noodles
• Potatoes
• Gluten-free flours (e.g. rice, corn, potato etc.)

Additionally, people with coeliac 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 Coeliac UK have lots of great resources for gluten-free meal ideas and where to eat out, as well as more information on coeliac disease and how to live with coeliac disease.

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

How can I get tested for coeliac disease?

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

Diagnostic testing for coeliac 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 coeliac disease can also be a helpful option for determining whether you are at risk of having or developing coeliac 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 £99, an AlphaBiolabs Genetic Coeliac Disease Test uses Human Leukocyte Antigen (HLA) typing to confirm or rule out the potential of developing coeliac 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 coeliac 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 coeliac 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 coeliac 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 coeliac disease in the future.