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Coeliac disease diagnosis rates rise to 30% in the UK – but still missing half a million people

Written by Samantha Lade, Donr

Published on Wednesday, 29th August 2018

Coeliac disease diagnosis rates rise to 30% in the UK – but still missing half a million

Coeliac UK has this morning announced that diagnosis of the autoimmune disease coeliac disease has risen in the UK from 24% in 2011, to 30% in 2015.

The research, commissioned by the largest independent charity for people who need to live gluten free, searched 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, alarmingly the rate of diagnosis was slowing significantly – resulting in around half a million people in the UK still living undiagnosed with coeliac.

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 reporting 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.'

On average, 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.

Alison Reid, CEO of The IBS Network, said: 'It is essential that people with chronic gut conditions – whether that's coeliac disease of 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.'

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.

Coeliac UK's online assessment allows people to quickly check if they should go to the GP and ask for a blood test.