Jewish charity warns of coeliac ‘stigma’ as half-a-million said undiagnosed

A Jewish charity says there is a “stigma” surrounding coeliac disease in the Jewish community, after a national charity warned that there were still half a million people in the UK who are undiagnosed.

The serious auto-immune disease is caused by a reaction to gluten, a protein found in wheat, barley and rye. It affects roughly one in 100 people, sometimes manifesting in the skin as dermatitis herpetiformis, and is common among Jews with Ashkenazi heritage, together with other gastrointestinal conditions.

Crohn’s Colitis Relief (CCR), based in Stamford Hill, welcomed new figures released last week by Coeliac UK, which showed that there had been a 30 percent increase in clinical diagnosis, but recognised that many Jews still hadn’t come forward.

“More can be done, especially among the more Orthodox communities, because the issue of stigma plays a big role when parents or patients determine whether to be open about the disease,” said Levi Schapiro of CCR.

“However we welcome the new figures as a great step forward. We have had many patients referred to us with coeliac conditions who we then refer to the appropriate health-care centres.”

Schapiro said CCR “find that medical professionals sometimes misdiagnose patients by diagnosing Irritable Bowel Syndrome (IBS),” adding: “It is critically important that doctors identify the disease and the patient gets early intervention.”

Coeliac UK said that although diagnosis had risen by a quarter from 2011 to 2015 “there are still half a million people in the UK undiagnosed and the percentage of those initially misdiagnosed with IBS remains the same”.

Sarah Sleet, chief executive of Coeliac UK, said: “It’s fantastic that the research shows that around 45,000 people were diagnosed between 2011 and 2015. But with half a million people in the UK still without a diagnosis we’ve got a long way to go.”

It still takes 13 years on average for a person with coeliac disease to be diagnosed, but guidelines from the National Institute of Clinical Excellence (NICE) say those presenting with IBS symptoms should first be screened for coeliac disease.