My child has a positive coeliac test. What does it mean and what happens next?

By Dr Rohan Malik

Paediatric gastroenterologist in Woolloongabba, Brisbane

You’ve taken your child for blood tests, and the results have come back suggesting coeliac disease.

It’s understandable to have questions. Does a positive result mean your child definitely has coeliac disease? Do you need to change their diet straight away? And what happens next?

The first thing to know is that a positive coeliac blood test is an important finding, but it isn’t always the end of the diagnostic process. Further assessment may be needed before a diagnosis is confirmed.

And importantly, don’t remove gluten from your child’s diet just yet.

What does a positive coeliac blood test mean?

Coeliac blood tests look for particular antibodies that can be elevated when the immune system is reacting to gluten.

A positive result increases the likelihood that your child has coeliac disease, but the result needs to be considered alongside other information, including which antibodies were tested, how elevated they are and your child’s overall clinical picture.

This is why a positive result will often lead to referral to a paediatric gastroenterologist.

Does a positive blood test confirm coeliac disease?

Not necessarily.

Depending on the blood test results and your child’s circumstances, further testing may be required to confirm the diagnosis.

For some children, this may involve an upper gastrointestinal endoscopy with small biopsies taken from the small intestine. These samples allow the gastroenterologist to look for the characteristic changes caused by coeliac disease.

In selected children with very high antibody levels who meet specific criteria, coeliac disease may sometimes be diagnosed without a biopsy. Your paediatric gastroenterologist can determine which diagnostic pathway is appropriate for your child.

Don’t start a gluten-free diet yet

This is one of the most important messages for families following a positive coeliac blood test.

It can be tempting to immediately remove bread, pasta and other gluten-containing foods from your child’s diet. However, your child should continue eating gluten until the diagnostic process is complete, unless their treating doctor advises otherwise.

If gluten is removed too early, the intestine can begin to heal, and antibody levels may fall. This can make subsequent testing less reliable and potentially make it harder to confirm the diagnosis.

There will be plenty of time to make dietary changes once you know exactly what you’re dealing with.

What happens at the gastroenterology appointment?

Your gastroenterologist will review your child’s test results, symptoms, growth, medical history and family history.

They will then discuss whether further investigations are needed and explain the next steps.

This is also an opportunity to ask questions. Coeliac disease is a lifelong condition, so confirming the diagnosis properly before committing a child to a lifelong gluten-free diet is important.

What happens if coeliac disease is confirmed?

Once the diagnosis is confirmed, treatment involves following a strict gluten-free diet.

For children with coeliac disease, removing gluten allows the small intestine to heal and helps the body absorb nutrients properly again. Symptoms often improve, although the time this takes will vary from child to child.Families may also receive support from a dietitian to understand which foods contain gluten, how to read food labels, avoid cross-contamination and make sure their child’s diet remains nutritionally balanced.

Ongoing follow-up may be recommended to monitor your child’s symptoms, growth, nutritional health and response to the gluten-free diet.

A positive test is the beginning, not the diagnosis

Seeing an abnormal result on your child’s blood test can be concerning, but there’s no need to overhaul their diet before you have all the information.

The next step is to confirm whether coeliac disease is actually present and, if it is, put the right management and support in place.

Until then, keep your child eating their usual gluten-containing diet and follow the advice of your GP or paediatric gastroenterologist.