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Gluten-free diet and lifestyle

Getting diagnosed

Coeliac disease affects all ethnic groups and is common in Europe and North America, as well as in southern Asia, the Middle East, North Africa and South America.

Stages of diagnosis

1. If you have symptoms of coeliac disease, you should first discuss your concerns with your GP. Do not remove gluten from your diet at this stage.

2. Your GP will take a simple blood test to check for antibodies. These can indicate coeliac disease. However, it’s possible to have a negative test and yet still have coeliac disease. Do not remove gluten from your diet at this stage.

3. Your GP will then refer you, if the blood test is positive or there is clinical suspicion of coeliac disease, to a gut specialist – a gastroenterologist – for a gut biopsy. Do not remove gluten from your diet until the biopsy has been done.

If you’re unsure about whether you should be tested for coeliac disease, you might find it useful to take the Coeliac UK online assessment for coeliac disease. This short questionnaire will take you through the symptoms of coeliac disease and other risk factors. To take the online assessment, visit: www.isitcoeliacdisease.org.uk.

For children, a biopsy may not be necessary in every case. New guidelines have been published by Coeliac UK and the British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) recommending that children with symptoms of coeliac disease whose blood tests show a high level of antibodies and have the genes for coeliac disease, may not need to have a biopsy to confirm the diagnosis. Your child’s GP can refer them to a paediatric gastroenterologist to make sure the correct tests are carried out.

See our coeliac disease in children page for more information on diagnosing coeliac disease.

There are home testing kits for coeliac disease available over the counter or online. However, it is important to get medically diagnosed with coeliac disease.

Coeliac UK's Chief Executive Sarah Sleet gives advice for people who think they may have coeliac disease:

Keep eating gluten throughout the diagnosis process

If you think you may have coeliac disease, it’s essential to continue eating gluten until your doctor makes a diagnosis.

The diagnostic tests for coeliac disease look at how the body responds to gluten. Some people may start to reduce or eliminate gluten from their diet because they feel ill. Unfortunately this is very likely to cause an inaccurate result for both the blood test and the gut biopsy. Therefore, it’s very important to keep eating gluten throughout the diagnosis process.

If you've already reduced or eliminated gluten from your diet, you will need to reintroduce it to make sure you get the most accurate test results. While it may be difficult and uncomfortable, it’s essential for your long term health.

As a general guideline, the recommendation is to eat some gluten in more than one meal every day for at least six weeks before testing.

For children, you can mix wheat flour into foods such as yoghurt or baked beans to add more gluten into their diet.

If you are reintroducing gluten into your diet, you should discuss how best to manage your symptoms with your GP. Your GP will be able to arrange for you to be tested for coeliac disease as soon as it is appropriate.

We understand how hard it is to get diagnosed if you have started a gluten-free diet. Getting a medical diagnosis, however, is important to ensure you get the medical follow up and support that is recommended for people with coeliac disease. Unfortunately, there are no other tests that can diagnose coeliac disease other than the antibody blood test and the gut biopsy. These tests depend on people eating gluten.

See our coeliac disease in children page for more information on diagnosing coeliac disease and follow up care in children.

Norma McGough, Coeliac UK's Director of Policy, Research and Campaigns, discusses why gluten must be in the diet throughout the diagnosis process for coeliac disease:

 

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