“Unacceptable” people living with coeliac disease in Wales aren’t getting a diagnosis

It is “unacceptable” that so many people living with coeliac disease aren’t receiving a diagnosis, a North Wales MS has said.

Llŷr Gruffydd, who represents the region in the Senedd, recently met with representatives of Coeliac UK at the Welsh Parliament to discuss the issue.

The Plaid Cymru politician spoke with campaigner Trudy Winsper from Llangollen, who has the condition.

According to research by Coeliac UK, a charity for people who need to live without gluten, over 20,000 people in Wales are living with coeliac disease without receiving a diagnosis.

Mr Gruffydd said the lack of an effective diagnosis pathway is negatively impacting the “quality of life” of people who have the condition, as well as putting “strain” on the Welsh NHS.

Though 1 in every 100 have Coeliac disease, figures suggest that only around 36% of them get a diagnosis. On average it takes 13 years to receive one.

Coeliac disease is a serious condition where the immune system attacks the body’s own tissues when gluten is eaten. This causes damage to the lining of the gut and means the body can’t properly absorb nutrients from food.

Because of the way that coeliac disease can affect the gut, it’s frequently misdiagnosed as irritable bowel syndrome.

The symptoms range from mild to severe, and can include bloating, diarrhoea, nausea, wind, constipation, tiredness, mouth ulcers, sudden or unexpected weight loss, and anaemia.

Coeliac UK provides its 65,000 members with trustworthy advice and support.

It also funds research into coeliac disease, and works with healthcare professionals to improve diagnosis and fights for better availability of gluten free food.

The charity’s mission is to ensure that one day, no one’s life will be limited by gluten.

“I am grateful to have had the opportunity to speak with representatives from Coeliac UK at the Senedd,” said Llŷr Gruffydd MS.

“At the event I had the opportunity to speak with clinicians and with patients and hear about the barriers that exist to getting a diagnosis.

“I am especially grateful to have had the opportunity to speak with Trudy Winsper from Llangollen and hear about her experience with the condition.

“A significant number of people have the condition, including many constituents in North Wales.

“The research from Coeliac UK which suggests that there are over 20,000 people in Wales living with coeliac disease without receiving a diagnosis is concerning.

“It is unacceptable that people who are living with coeliac disease aren’t receiving diagnosis they need.

“Not only does this negatively impact the lives of people who have the condition and cause them more suffering, it also puts more strain on our NHS when it is already under enormous pressure.

“This is because leaving coeliac disease untreated increases the risk of developing long-term health complications.

“It seems abundantly clear that there needs to be a far more effective diagnosis pathway for people who have the condition in Wales.”