Earlier this year, the UK National Screening Committee (UK NSC) asked for feedback on evidence relating to screening adults for coeliac disease.
Coeliac disease is one of the conditions the committee reviews regularly to assess evidence that could support a national screening programme. Screening is not currently recommended.
We asked stakeholders to share their views on an evidence map commissioned by the committee (evidence maps are typically the first step in the UK NSC’s evidence review process).
The evidence map explored 4 important questions:
How common is coeliac disease in known high-risk groups? How accurate are the available screening tests? Do people identified through screening have better health outcomes than those diagnosed through symptoms, known risk groups, or opportunistic testing? Is targeted screening more effective than universal screening for coeliac disease in adults without symptoms?The evidence map concluded that more analysis is needed of the published research on adult coeliac disease screening.
The UK NSC will now use the feedback received from stakeholders to help shape more in-depth work on this topic.
About coeliac diseaseCoeliac disease is a common bowel condition. It happens when the immune system is too sensitive to gluten, a protein found in some foods.
It damages the small intestine and can cause symptoms like diarrhoea, stomach pain and bloating. The primary test for coeliac disease is serological testing. This is a blood test that looks for substances called antibodies, which the body produces when it reacts badly to gluten. People with coeliac disease often have higher levels of these antibodies in their blood.
What stakeholders told usStakeholders broadly supported the evidence map’s findings. They emphasised the scale of underdiagnosis in the UK, noting that only around a third of people with coeliac disease are currently identified.
Stakeholders highlighted that varied and often non‑specific symptoms make diagnosis difficult. They agreed that targeted approaches for high-risk groups should be explored further.
They also raised significant concerns about the accuracy and consistency of serological testing across UK laboratories. They argued that standardised tests and stronger evidence on how well tests perform in screening contexts are essential.
Stakeholders identified areas where evidence is lacking, including:
long‑term outcomes cost‑effectiveness adherence to a gluten‑free diet among asymptomatic individuals the acceptability and feasibility of screening in the UKThey also questioned why the evidence map focused solely on adults given that international studies show high rates of undiagnosed disease in children.
Overall, stakeholders endorsed the evidence map’s conclusion and encouraged the UK NSC to commission more work.
Our responseThank you to everyone who took the time to share their feedback. We will use those suggestions to help shape more in-depth work that we plan to commission this summer.
The evidence map focused on screening for adults, as this is the group covered by the UK NSC’s existing recommendation. If you would like us to consider screening in other groups, you can suggest this by submitting a proposal via the UK NSC call for topics.
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seen at 11:34, 10 March in UK National Screening Committee.