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When you should be tested for coeliac disease

When you should be tested for coeliac disease

Your doctor should discuss with you having a blood test for coeliac disease if you have any of the following:

  • problems related to your stomach or intestines (such as diarrhoea, abdominal pain, vomiting or nausea) that are long‑lasting and can't be explained by anything else

  • ongoing tiredness

  • unexpected weight loss (for example, you are losing weight but you are not on a diet)

  • mouth ulcers that are severe or long‑lasting

  • anaemia, or a deficiency in vitamin B12 or folate (also known as vitamin B9 or folic acid) that can't be explained by anything else

  • irritable bowel syndrome (if you are an adult)

  • type 1 diabetes

  • autoimmune thyroid disease (when a person's immune system attacks and damages their thyroid gland; the gland in the neck that produces hormones controlling metabolism, growth and development).

You should also be offered a blood test for coeliac disease if one of your close relatives (such as your parent, child, brother or sister) has coeliac disease. Children who are not growing as fast as expected should also be offered a test. But babies shouldn't be tested before they have started eating foods containing gluten.

You might also be offered a blood test if you have any of the following:

  • reduced bone density or soft bones

  • abnormal liver test results

  • unexplained problems with your nervous system (for example, problems with your balance or coordination, or numbness or tingling in your hands or feet)

  • problems getting pregnant, or recurrent miscarriage (3 or more miscarriages in a row)

  • damage to the enamel on your teeth (the hard outer layer of the tooth) – for example, grooves in your teeth

  • Down's syndrome or Turner syndrome.

If you are thought to be at risk of coeliac disease your doctor should explain to you that there are risks to your long‑term health if you have coeliac disease and it's not diagnosed or there is a delay in getting the diagnosis.

What to eat while waiting to have a blood test

If you are having blood tests for coeliac disease, you will need to eat some gluten so that the tests can pick up the antibodies. If you take the tests without eating gluten, the results may not be accurate. You should eat some gluten in more than one meal every day for 6 weeks before you have the blood tests. You should carry on eating foods containing gluten until you have had coeliac disease confirmed by a specialist.

If you have already stopped eating gluten or have cut down, and you don't want to eat it again or you can't, the blood tests won't be appropriate for you. You should be referred to see a doctor who specialises in treating people with stomach and intestine problems (called a gastrointestinal specialist). They may want to perform a biopsy to find out more information. During a biopsy, your specialist will look inside your intestine for any inflammation or damage by passing a long thin tube with a camera attached down your throat and into your intestine. They will also take some tissue samples for testing. But your doctor should explain to you that it may not be possible to confirm a diagnosis of coeliac disease by having a biopsy.

Questions about finding out what is wrong (diagnosis)

  • Please give me more details about the tests I should have.

  • What do these tests involve?

  • Why might a biopsy not be able to confirm the diagnosis?

  • How long will it take to get the results?

  • Can you give me any help or information about what I should and should not eat?

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