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Gluten-free diet and lifestyle

Getting diagnosed

Coeliac disease is a serious illness where the body’s immune system attacks its own tissues when you eat gluten. This causes damage to the lining of the gut and means the body can’t properly absorb nutrients from food. Coeliac disease is not an allergy or food intolerance

It can take some time before an accurate diagnosis is made. Some symptoms may be confused with irritable bowel syndrome (IBS) or wheat intolerance, while others may be put down to stress or getting older. There are a range of symptoms associated with coeliac disease.

To make it easier to understand if your symptoms are possibly due to coeliac disease and discuss further testing with your GP, we have developed a self assessment test to make it easier to take that first step to diagnosis. See below for guidance on the stages of diagnosis.

Stages of diagnosis

1. Understand the symptoms - Check if you have the symptoms of coeliac disease here. Do not remove gluten from your diet at this stage.

2. Check for coeliac disease - If you have some of the symptoms listed, take our online assessment which is a short questionnaire on the symptoms and other risk factors. If the test result is positive, you can print it out and take to your GP for further discussion. Take the assessment now. If you’d rather just discuss your symptoms with your GP, then make sure to book an appointment. Do not remove gluten from your diet at this stage.

3. Have a blood test - If your GP thinks you need further testing, they 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.

4. Gut biopsy - If the blood test is positive or there is clinical suspicion of coeliac disease your GP will then refer you 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 test positive for coeliac disease, we have lots of information on how to manage your condition.

Testing for coeliac disease in children

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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