Members of North Devon’s Coeliac UK group have been meeting this week to mark Coeliac Awareness Week, and the charity’s 50th birthday.
It is thought one in 100 people have coeliac disease, a serious autoimmune condition which is caused by a reaction to gluten.
This week, Coeliac UK is encouraging people to raise awareness of the symptoms, which range from gut issues, weight loss and anaemia to neurological symptoms like headaches and balance problems.
Janet Ellis is secretary of the North Devon Coeliac UK group, which has been running for 25 years, and was diagnosed with coeliac disease in 1992.
The only treatment is a strict gluten free diet – something Janet said has come easier over the last two decades.
“There is a lot more choice of gluten free food nowadays, which makes it easier,” said Janet, who lives in Landkey.
“People have heard of coeliac disease more-and-more now, whereas I used to get questions like ‘oh, does that mean you can’t have milk?’”
Gluten is a protein found in wheat, barley and rye, and those with coeliac disease must maintain a strict gluten free diet to avoid serious health complications.
“At the moment a lot of people are just cutting out gluten because it’s a bit of a health fad,” added Janet.
“But it’s very important if you think you might have coeliac disease that you go to your GP and ask to get tested.”
This is a message Coeliac UK is echoing as part of awareness week, as it is estimated some half a million people are still undiagnosed in the UK.
Sarah Sleet, chief executive of Coeliac UK, said: “The fact that it still takes 13 years on average for a person to be diagnosed is unacceptable and is creating severe long term health problems for many people.
“We still have half a million people living undiagnosed with coeliac disease and we need to move faster to get them diagnosed to prevent these long term complications occurring.
“For example some patients have lived with the condition for so long, that by the time their neurological condition is identified as being caused by coeliac disease, the damage is irreversible and they face a lifetime of debilitating symptoms.”
The North Devon Coeliac UK group has around 500 members and is holding meetings this week at Barnstaple, Torrington and Bude to raise awareness.
For more information on coeliac disease and joining the contacting the local support group, visit the Coeliac UK website.