Half a million in the UK have undiagnosed coeliac disease

Coeliac UK, the largest independent charity for people who need to live gluten free, has announced that recent research shows diagnosis rates 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.

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

“testing for the condition is slowing and nothing has changed in people being diagnosed with IBS before being tested for coeliac disease. the NHS is failing to address the mountain of under diagnoses”

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 previously been misdiagnosed with Irritable Bowel Syndrome (IBS), the same percentage that had been reported in research from 2013.

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

Coeliac disease is a serious autoimmune condition caused by a reaction to gluten, a protein found in wheat, barley and rye. People diagnosed with coeliac disease must maintain a strict gluten free diet for the rest of their life if they are to avoid very serious complications such as osteoporosis, infertility and although rare, small bowel cancer.

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 under diagnoses. We know this is even more urgent today as recent research is uncovering some symptoms, specifically neurological ones that cannot be reversed without an early diagnosis.”

Alison Reid CEO The IBS Network said, “It is essential that people with chronic gut conditions – whether that’s coeliac disease or IBS – get an accurate diagnosis as quickly as possible. Having the right tests allows healthcare practitioners to put the right treatment in place and patients can learn how to best manage their condition.”

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