Recommendations for research

The Guideline Committee has made the following recommendations for research. The Committee's full set of research recommendations is detailed in the full guideline.

1 Serological testing in people who have IgA deficiency

What is the sensitivity and specificity of IgG tissue transglutaminase (tTG), IgG endomysial antibodies (EMA) and IgG deamidated gliadin peptide (DGP) tests in detecting coeliac disease in people with IgA deficiency?

Why this is important

IgA deficiency is significantly more common in people with coeliac disease than in the general population. People with IgA deficiency will have a false negative result when tested for IgA antibody, which may lead to a missed diagnosis of coeliac disease. A missed diagnosis may result in increased use of NHS resources and the person experiencing the risks associated with undiagnosed coeliac disease. IgG antibodies are recommended for use in place of IgA antibodies in people who have IgA deficiency, but there is limited evidence to demonstrate the sensitivity and specificity of tests for IgG antibodies – that is, IgG tTG, IgG EMA and IgG DGP – in people suspected of having coeliac disease with IgA deficiency.

2 Serological testing in people who test negative for anti‑transglutaminase

What is the sensitivity and specificity of IgA EMA and IgA DGP tests in detecting coeliac disease in people who test negative for IgA tTG?

Why this is important

In people with suspected coeliac disease, IgA tTG is most commonly used as the first‑choice test to detect the presence of coeliac disease antibodies but some people with coeliac disease will get a false negative result. If this happens, and if there is a strong and ongoing clinical suspicion of coeliac disease, serological testing for IgA EMA or IgA or IgG DGP antibodies should also be requested. However, there is little evidence for the sensitivity and specificity of these antibodies in people who have tested negative for IgA tTG antibodies. A clearer understanding of the sensitivity and specificity of EMA and DGP antibodies in people who have tested negative for IgA tTG will allow clinicians to better interpret test results and make a more informed diagnosis.

3 Dietary supplements

Should people with coeliac disease be offered calcium and vitamin D supplements for a specific time period soon after their initial diagnosis?

Why this is important

People with coeliac disease are at an increased risk of malabsorption of key nutrients such as calcium and vitamin D. This is because of the role gluten plays in preventing these nutrients from being properly absorbed. It is not known how long the body takes to properly absorb these vitamins and minerals once a gluten‑free diet is started. It is also not known whether the majority of people diagnosed with coeliac disease have enough calcium and vitamin D in their diet, or whether some people with coeliac disease are able to get enough of these nutrients from what they eat. Answering this research question will help healthcare professionals to understand whether calcium and vitamin D should be offered to everyone at the time of diagnosis and for how long these vitamin and mineral supplements should be taken.

4 Dietitian contribution to patient management

How can the role of the dietitian contribute most effectively within a coeliac disease team?

Why this is important

As a gluten‑free diet is the primary treatment option for people with coeliac disease, it is important that a dietitian with a specialist interest in coeliac disease should play a significant role in their care and follow‑up. Many of the common problems associated with the long‑term management of coeliac disease happen because of non‑adherence to a gluten‑free diet. It is important to explore how to maximise the effectiveness of the dietitian's role in helping people with coeliac disease to adhere to a gluten‑free diet.

5 Frequency of monitoring

What is the effectiveness of more frequent monitoring compared with monitoring at 12 months after diagnosis in people with newly diagnosed coeliac disease?

Why this is important

It is currently not known how often people with coeliac disease should have their condition monitored. No research has adequately investigated the effectiveness of different monitoring frequencies. There is variation across the UK in how often people with coeliac disease have their condition monitored. Further research within this area is important to ensure that people with coeliac disease are having their condition adequately monitored.

  • National Institute for Health and Care Excellence (NICE)