Coeliac disease diagnosis rises to 30% – but still missing half a million

August 29, 2018

Recent research shows diagnosis of the autoimmune disease, coeliac disease, which affects 1 in 100 people, has risen in the UK from 24% in 2011 to 30% in 2015.

Recent research shows diagnosis of coeliac disease, which affects 1 in 100 people, has risen in the UK from 24% in 2011 to 30% in 2015.

The research, commissioned by Coeliac UK, from the University of Nottingham, searched UK patient records up to and including 2015 for clinical diagnoses of coeliac disease and dermatitis herpetiformis.

The research showed that although diagnosis rose by a quarter in four years (2011-2015), alarmingly the rate of diagnosis was slowing significantly, resulting in around half a million people in the UK still living with undiagnosed coeliac disease.

It also highlighted that 1 in 4 adults over 18 years diagnosed with coeliac disease had a previously been misdiagnosed with Irritable Bowel Syndrome (IBS), the same percentage that had been reported in research from 2013.

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. The fact that testing for the condition is slowing and nothing has changed in people being diagnosed with IBS before being tested for coeliac disease, suggests the NHS is failing to address the mountain of underdiagnoses. We know this is even more urgent today as recent research is uncovering some symptoms of coeliac disease, specifically neurological ones that cannot be reversed without an early diagnosis.”

It still takes 13 years on average for a person with coeliac disease to be diagnosed.

The NICE guidelines for coeliac disease and IBS recommend that anyone presenting with IBS symptoms should be screened first for coeliac disease.

Coeliac UK’s online assessment allows people to quickly check if they should go to the GP and ask for a blood test – www.coeliac.org.uk/isitcoeliacdisease