New Joint BSPGHAN / Coeliac UK Guidelines for Coeliac Diagnosis in Children

Described as the ‘biggest shake-up in diagnostic practice for coeliac disease in 40 years’ the new paediatric guidelines are aimed at helping diagnoses in young people and speeding up their treatment – with claims they will also have a knock-on effect of saving the NHS money. Alex Gazzola explores.

New guidelines by the British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) and Coeliac UK, the national charity for people with coeliac disease, have been published in the Archives of Disease in Childhood (and are also available in PDF from BSPGHAN here.)

The guidelines follow on from the ESPGHAN guidelines in overall diagnostic strategy, the details of which (and controversies surrounding) we reported on in 2012.

There are two diagnostic pathways, both averagely complex algorithms, taking into account both symptomatic children and asymptomatic children with associated conditions (eg family history, other autoimmune conditions, certain genetic conditions such as Turner’s and Down’s syndromes). The testing modalities include the familiar antibody testing (tTg, EMA, IgA), genetic testing (HLA DQ2/8 typing), and duodenal biopsies.

The key change concerns symptomatic children whose blood tests show a high level of IgA tissue transglutaminase antibodies (ten times the upper limit of normal for assay). The new guidelines recommend that such children do not need to undergo biopsy to secure a diagnosis. This will reduce medical expenses (a biopsy in a child requires general anaesthesia and costs £1,000) and allay the fears of many parents who do not wish their children to undergo the procedure – especially when they are perhaps unwell. A gluten-free diet can be implemented at once – or at least, after a genetic test to confirm HLA DQ2/8 typing – possibly saving delays and ongoing pain, discomfort and symptoms.

It is estimated a third of children will be diagnosed without biopsy once guidelines are established and implemented.

Some commentators – such as Dr Rodney Ford and our own regular contributor Micki Rose – believe that the guidelines do not go far enough, and could leave some children at risk of ongoing symptoms, growth problems and other health issues. They argue that raised antibodies should be enough of a marker to recommend a gluten-free diet be implemented before villous atrophy occurs or worsens.

The counter-argument is, of course, that raised antibodies may not indicate coeliac disease (potential or actual) in themselves and could be falsely positive. The long-term prognosis of children with modestly raised antibodies is not clearly understood, and coeliac disease with villous atrophy may never develop in such cases. Why impose a difficult, expensive, restrictive diet until there is certainty? 

The stated exception to this is when health is severely compromised. The authors of the guidelines state: “Children should not be started on a gluten-free diet on the basis of an antibody test alone, unless their clinical condition is so poor that treatment cannot safely be delayed.”

November 2013

Coeliac Disease: What you need to know by Alex Gazzola, is now out.


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