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Doctors Are Missing Coeliac Disease, Warns Senior GP, Whose Daughter Has The Condition

“As doctors, we are missing many diagnoses of ,” warns a senior GP.

Attending a parliamentary reception with policy makers to mark Coeliac Awareness Week, Dr Geraint Preest, a GP Principal in Bridgend is calling on doctors to “have a high index of suspicion when patients present with symptoms applicable to coeliac disease.”

Dr Preest, who has a young daughter with the condition, conducted a study at his practice and was surprised to find that for every five expected cases of coeliac disease, only one case had been diagnosed. Despite guidelines advising doctors to test for coeliac disease before making a diagnosis of irritable bowel syndrome (IBS), in his experience when reviewing new patients’ notes, this is often not done.

This correlates with figures from Coeliac UK suggesting that only up to 15% of people with coeliac disease are currently diagnosed – and that one in four have previously been misdiagnosed as having the disease.

This week Coeliac UK launch ‘Gut Feeling’ – a campaign to find the half a million people in the UK with undiagnosed coeliac disease.

“The problem is compounded by the fact that many patients have subtle symptoms,” adds Dr Preest. But he warns that, left undiagnosed, coeliac disease can lead to small bowel cancer, osteoporosis and is associated with infertility.

In addition, there is a considerable cost attached to missing a diagnosis, with evidence suggesting that patients make an average of 28 visits to their GP with coeliac-related symptoms prior to a diagnosis being made.

To help reduce the huge impact of delayed diagnoses, BMJ Learning and OnExamination are offering GPs free modules on testing for and diagnosing coeliac disease.

BMJ Informatica provides audit software to practices to help to identify those with coeliac disease who have not been diagnosed. It will prompt appropriate confirmatory investigations and also prompt appropriate long term monitoring and management of the condition. To coincide with Coeliac Awareness Week, it has a special offer on the coeliac disease audit.

Dr Preest believes GPs should exclude coeliac disease in all patients diagnosed with IBS and be alert to symptoms and conditions commonly associated with coeliac disease. He also points out that first degree relatives have a one in ten chance of having the condition.

He suggests that doctors often don’t consider coeliac disease when patients come to them with subtle symptoms, saying: “There’s more of it around than we appreciate and we must be suspicious and ready to test when we see patients who run a higher risk of the disease and especially before we settle on a diagnosis of IBS.”

In an accompanying article, Dr Preest’s wife, who is also a doctor, talks about their daughter’s condition and its implications for her future.

“To have the diagnosis was a relief,” she says, but “the reality of the situation soon became apparent.”  She describes buying food as “an absolute minefield for the unwary” and “prohibitively expensive” but says “we try to keep life as normal as possible and to equip our daughter with the ability to deal with her condition in the future with as minimal impact on her lifestyle and wellbeing as possible.”

“And, of course, we remain hopeful that eventually a cure for the condition will be found,” she concludes.


British Medical Journal (BMJ)