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High risk groups for coeliac disease

High risk groups for coeliac disease

Key learning points:

•   Coeliac disease is an autoimmune condition that is triggered by gluten and causes inflammation in the gut. It can damage the body if left undiagnosed

•   It is thought to affect about 1% of people in the UK, but is under-diagnosed. It’s more common among certain groups of people, who should be tested for the disease

•   People with other autoimmune diseases and those with close relatives who have coeliac disease are at higher risk of developing it themselves

About 1% of people in the UK have coeliac disease.1 Coeliac disease can make it hard to absorb nutrients and can damage the body. The only treatment is to follow a strict gluten-free diet.

Some people have a higher than average risk of coeliac disease. It’s important that these people are tested, because early diagnosis means they can start on a gluten-free diet. This may prevent them from getting long-term complications.

About coeliac disease

Coeliac disease is a disease of the immune system, and is thought to be largely caused by genetic susceptibility. The immune system of people with coeliac disease reacts to gluten, a protein found in grains including wheat, barley and rye. This causes inflammation, primarily in the small intestine, although other parts of the body are also affected.1

Symptoms include indigestion, stomach pain or discomfort, bloating, diarrhoea and constipation.1 Coeliac disease can also cause non-gastrointestinal symptoms including tiredness, reproductive problems and a skin condition called dermatitis herpetiformis.2 Difficulty in absorbing nutrients, because of inflammation, can cause anaemia and osteoporosis. If coeliac disease is undiagnosed, damage to the intestine can eventually lead to bowel cancer.2

Many people living with coeliac disease have not been diagnosed and are unaware that they have the condition. Studies suggest that, for every patient identified as having coeliac disease, seven to eight remain undiagnosed.1

High-risk groups

People at increased risk of coeliac disease include those with another auto-immune disease, and people with a close relative with coeliac disease. The National Institute for Health and Care Excellence (NICE) guidelines say these people (as well as people with symptoms of coeliac disease) should be tested. However, gastroenterologists say that this testing does not happen routinely.2 Primary care nurses therefore have a role to play in checking whether people with these conditions have been tested.

According to NICE, people should be tested for coeliac disease if they have:3

•   Type 1 diabetes.

•   Autoimmune thyroid disease.

•   Irritable bowel syndrome(IBS).

•   Close relatives with coeliac disease.

Type 1 diabetes

Type 1 diabetes is usually diagnosed in childhood or early adulthood. It happens when the immune system destroys cells in the pancreas, preventing them from producing insulin. About 3% to 6% of people with type 1 diabetes also have coeliac disease.4

NICE says that when people are diagnosed with type 1 diabetes they should also be tested for coeliac disease,3 even if they have no clear symptoms of coeliac disease, or their symptoms might be down to their diabetes. Undiagnosed coeliac disease in childhood can cause problems with growth and development.

Auto-immune thyroid disease

Autoimmune thyroid disease, also known as Graves’ disease, is most common among women aged 20 to 40. The immune system attacks the thyroid gland, which reacts by over-producing thyroid hormones. Symptoms of Graves’ disease include hyperactivity, difficulty sleeping, intolerance of heat, weight loss, mood swings and needing to go to the toilet more often.5

NICE says people with autoimmune thyroid disease should also be tested for coeliac disease when they are first diagnosed.3 Some people with Graves’ disease also have type 1 diabetes.

Irritable bowel syndrome (IBS)

Symptoms of IBS overlap with symptoms of coeliac disease, which is why NICE says adults diagnosed with IBS should also be tested for coeliac disease. Having IBS doesn’t indicate a raised risk of coeliac disease, but coeliac disease should be ruled out before people are diagnosed with IBS.3

IBS symptoms include abdominal pain or discomfort, bloating, and altered bowel habit (which might be constipation or diarrhoea, or both at different times).6

Relatives of people with coeliac disease

People with a first-degree relative (parent or sibling) with coeliac disease have a 5% to 11% chance of also having it. People with a less close relative (grandparent, aunt or uncle, cousin) also seem to have an increased risk, but this is less certain.1 Coeliac disease seems to have a strong genetic component, with 90% of people carrying a gene variant that makes them vulnerable to the disease.1

NICE says that only first-degree relatives of people with coeliac disease should be tested.3

What next?

People in high-risk groups for coeliac disease should be offered blood tests to check for antigens to gluten. They should be advised that the tests work only if they continue eating gluten until they’ve had the test.3

After testing, people with positive tests should have the diagnosis confirmed by a specialist. This might include having a biopsy (a small sample of tissue) although that is not always necessary for children.3

Once a patient has been diagnosed with coeliac disease, they will need to switch to a strict gluten-free diet. They should see a specialist to help them eat a healthy, balanced diet that does not contain gluten. They may also be able to get some gluten-free food on prescription.

The charity Coeliac UK has lots of information about living with a gluten-free diet.


Coeliac disease is a more common condition than many people realise. Early diagnosis is important to prevent damage to the body. Nurses in primary care should be aware of high-risk groups, so they can check whether these people have been tested for coeliac disease.


Coeliac UK

NHS Choices


1: Peter D Mooney, Marios Hadjivassiliou, David S Sanders. Clinical review: coeliac disease. BMJ 2014;348:g1561

2: British Society for Gastroenterology. Chronic management: Coeliac disease.

3: National Institute for Health and Care Excellence. Coeliac disease: recognition, assessment and management [NG20] Published date: September 2015

4: Roger Jones. Coeliac disease. BMJ 2009;338:a3058

5: Bijay Vaidya, Simon H S Pearce. Diagnosis and management of thyrotoxicosis. BMJ 2014;349:g5128

6: National Institute for Health and Care Excellence. Irritable bowel syndrome in adults: diagnosis and management Clinical Guideline 61. Published date: February 2008 Last updated: February 2015

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About 1% of people in the UK have coeliac disease.1 Coeliac disease can make it hard to ab-sorb nutrients and can damage the body