Coeliac patients don’t get standardised care

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Adapted from BMJ 7-14 Feb 2026 Knowledge gaps in Coeliac Disease by Zachary Green research fellow and Professor Mark Beattie professor of paediatric gastroenterology Southampton Children’s Hospital UK.

Coeliac disease is a disorder of acquired loss of immune tolerance to ingested cereal proteins that affects around 1% of the global population. The clinical presentation is highly variable. There can be gut symptoms, bodily symptoms unrelated to the gut, and asymptomatic disease that can only be detected by screening. You have to do the serological tests while the person is still consuming gluten.

Untreated disease is associated with nutritional deficiency, osteoporosis, infections and sometimes malignancy. Both nationally and internationally, the screening, diagnostic and monitoring practices vary between adults and children, nationally and internationally.

We think that coordinated, prospective research is needed to address knowledge gaps such as:

the health and cost effectiveness of mass screening

the best serological and biomarkers to use in diagnosis and management

which drug treatments could be used effectively

Opinions differ on whether a gut biopsy is necessary or not to diagnose Coeliac Disease. The European Society of Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) and the American College of Gastroenterology (ACG) both think that a biopsy is not necessary if a child has markedly raised serum tissue transglutamase IgA.

ACG also say that a biopsy is not necessary if adults are symptomatic and who can’t tolerate an upper gastro-intestinal endoscopy. The European Society for the Study of Coeliac Disease (2025) say that its fine not to biopsy adults under the age of 45 who have had two separate IgAs ten or more times the upper limit of normal. This stance was endorsed by a meta-analysis of over 12 thousand patients from 15 countries where this level had a specificity of 100% and a positive predictive value of 98%.

Despite this, except for Finland, most guidelines continue to recommend histological confirmation in most adults. During the Covid epidemic, the British Society of Gastroenterology, advised stopping endoscopies. Cost and time benefits resulted. But, variability in assays and upper limits of normal are thought to be barriers to widespread adoption.

In the UK alone, there are 12 different IgA assays and the upper limit of normal varies between 3-30 IU/mL. Upper GI endoscopy has risks and has an environmental and cost burden. If screening is to be considered at all, we need to have pathways for repeat tests and biopsy thresholds.

Ongoing monitoring is also far from standardised. The correlation between symptoms, serology and mucosal recovery remains unclear. Prospective, international cohorts with long term follow up data are needed to determine serological thresholds and quantify population and individual risk. To minimise unnecessary procedures “no biopsy” pathways need engagement from clinicians and multi-disciplinary teams.

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