Are Coeliac Disease Diagnosis Rates Higher in Families?

22 January 2024

Are Coeliac Disease Diagnosis Rates Higher in Families?

The risk of being diagnosed with coeliac disease in the general population is just 1%. However, according to the NHS, if you have a first degree relative with the condition, such as a parent, sibling or child, the coeliac disease diagnosis rate increases tenfold to around 10%. This rises even further to around 75% if you have an identical twin with the condition.

But why does this happen, and what should you do if you think that you are at risk of developing coeliac disease?

The genetic basis of coeliac disease

As the NHS explains, coeliac disease is strongly associated with the presence of certain genes that control specific parts of our immune system. These gene variants are known as HLA-DQ 2 and HLA-DQ 8. The presence of these genes will make the person carrying them more susceptible to developing coeliac disease at some point in their life.

In the presence of certain environmental triggers, HLA-DQ 2 or HLA-DQ 8 genes can prompt a cascade of events that ultimately result in your immune system reacting inappropriately when you eat gluten.

Your body’s own immune system begins to attack healthy tissue within the  gut, causing inflammation and flattening of the villi (the delicate structures that line the gut).

The villi are responsible for absorbing nutrients from food. The inflammation and damage caused by coeliac disease prevents your body from absorbing many of the essential nutrients, vitamins and minerals that you need from your food. It can also disrupt the digestive processes, leading to pain, vomiting, diarrhoea and other symptoms.

The genes associated with coeliac disease may be passed down by either one, or even both, of your parents, and this increases the risk of you developing coeliac disease. However, having the genes does not mean that you will definitely develop coeliac disease.

An increased risk

Your risk of developing coeliac disease if you have a close relative with the disease increases from one in a hundred to one in ten. However, it is important to remember that this also means that nine out of ten people in this situation do not develop the disease.

In fact, even if both parents have coeliac disease, or carry the gene without developing the disease, you still may not inherit the genes from them.

There is also a strong chance that you may inherit the genes and never develop the disease. Up to 40% of the general population carry the HLA-DQ2/ HLA-DQ8 genes, however only 1% of the population have coeliac disease, demonstrating that other factors are important in the development of coeliac disease.

How do you know if you have the genes?

It is possible to find out if you carry the HLA-DQ2/ DQ8 genes via a blood test or mouth swab. However, HLA-DQ typing isn’t routinely offered in the UK and is usually only recommended by a specialist gastroenterologist or paediatrician under particular circumstances. For example it may be offered to children who have other medical conditions associated with coeliac disease.  Genetic testing for coeliac disease is not a standard part of the coeliac disease diagnosis process.

As our case study of Katie shows, you may need to get tested more than once through your lifetime, as coeliac disease can develop at any age. Katie was given a negative result in her teens, but she started to notice symptoms in her early twenties and was confirmed to have developed coeliac disease since her initial test.

Here to help

Whether you are the first in your family to be diagnosed with coeliac disease, or you have other family members who already have the condition, getting a formal coeliac disease diagnosis is vital. Not only will it help you to understand and manage your condition, but it will also qualify you for a range of gluten free products on prescription from Glutafin.

If you have a close relative with coeliac disease and are experiencing any of the symptoms associated with the condition, you should speak to your GP without delay and request a blood test for coeliac disease.

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