COELIAC disease is a lifelong autoimmune disease where the body’s immune system reacts to gluten, a protein found in wheat, barley and rye.

The body’s reaction to gluten causes damage to the lining of the intestine, preventing the body from absorbing important nutrients. There is no cure and the only treatment is a strict gluten-free diet for life.

Earlier this month, Coeliac UK, the largest independent charity for people who need to live gluten free, warned that delayed diagnosis of coeliac disease is creating a growing health problem across the UK, with undiagnosed patients at risk of suffering with complications of the disease, including irreversible neurological damage.

In its 50th anniversary year, the charity is urging health professionals and the general public to take coeliac disease seriously and as part of the charity’s awareness week activities (May 14-20, 2018) is highlighting the symptoms and emerging evidence relating to previously unknown complications of the autoimmune disease.

Sarah Sleet, chief executive of Coeliac UK, said that even though awareness of coeliac disease has grown, there still exists a perception that the disease is not that serious because it requires a gluten free diet as its medical treatment.

She said: “Many see coeliac disease as just a disease of the gut, when in fact it is a systemic disease that can affect other parts of the body.

“A coeliac disease diagnosis is often missed because the patient is not presenting with gut symptoms, but rather they may present with neurological symptoms and are directed to a neurologist rather than a gastroenterologist.”

One in 100 people in the UK has coeliac disease but about half a million people in the UK are currently undiagnosed. It still takes an astonishing 13 years on average for a person to be diagnosed.

Sarah added: “Although many people present with a range of symptoms, including those that are gut related, other symptoms include mouth ulcers, anaemia, repeated miscarriages and neurological problems.

“The charity urges anyone that has ongoing symptoms to visit their GP and request a blood test for coeliac disease.

“It is essential not to remove gluten from their diet prior to testing as this could lead to a

false negative result.”

“I was diagnosed 20 years ago but previous to that they were treating me for irritable bowel syndrome (IBS) and telling me to not eat this and not eat that,” says Yvonne Smith, 82, a coeliac sufferer from Corwen in Denbighshire.

“It was a long time before they discovered it was the gluten in my system and my diagnosis only came after my husband read an article in a magazine about

a woman who had excluded gluten from her diet and was feeling a lot better.

“It was all the same symptoms I had, so I took the article to my GP and he luckily agreed to do the test.”

Gluten is a protein found in wheat, barley and rye, with obvious sources including foods that contain traditional flour like bread, pasta, cereals, cakes and biscuits. It can also be found in sausages, stock cubes, fish fingers and even in some chocolate.

“I was getting a dreadful rash like chickenpox and they just couldn’t understand what I was eating to cause it,” says Yvonne. “At the time it was very hard to remove gluten from your diet.

“We could get them on prescription but that has now been cut right back. Thankfully today’s supermarkets and restaurants are all geared up to serve gluten free food, even if

it is that much more expensive.”

If someone with coeliac disease accidentally eats gluten, they are likely to be unwell within a few hours, with symptoms including severe diarrhoea and vomiting.

“I started by buying a breadmaker and making my own bread,” says Yvonne. “One of the first things I really remember missing was sausages and I can’t have things with oats either.

“Thankfully there is now a really good variety of things available in the supermarket

but when you’re just on a pension it can become quite expensive.”

In 2015, the UK’s first online assessment for coeliac disease where people can check their symptoms was launched to help find the missing half a million people in the UK currently undiagnosed.

“People are so much more aware now and they can diagnose it quicker,” continues Yvonne. “You’d be surprised how many children have got it because of course it is hereditary.

“When we go to events and functions to do with the Society there are always a lot of children there but I’m always willing to speak about it as long as it helps people.

“I’ve become so much better over the years and if I can help people I will.”

l To find out more about the condition go to www.coeliac.org.uk/coeliacdisease