Preston woman can't get diagnosed with coeliac disease unless she makes herself ill again by eating gluten

The 30-year-old says she cannot be certain she has coeliac disease as, to get an official diagnosis, she would have to go back to eating the foods which made her ill in the first place.

She says: “I had been suffering for 15 years before I tried cutting out gluten.

“I was diagnosed with IBS (irritable bowel syndrome) when I was 15 as I constantly had diarrhoea. My dad has Crohn’s disease, so I had tests for that, but luckily I didn’t have it. When I was in my mid to late 20s I would get sick whenever I had pasta and bread. Even if I had a tiny bit, or something that was prepared in the same area I would be ill for five days.

“The vomiting and diarrhoea would last for a few hours, but for four or five days I would feel unwell, like I had the flu. My whole body would ache with joint pain and I had no energy as I had chronic fatigue.

“I would have brain fog and poor concentration.

“Being gluten free, however, really works for me. I feel a different person and I have so much energy now.

“I am convinced I have coeliac disease, but there is still doubt. The only way to be diagnosed is to eat a lot of gluten for six weeks.

“Before I realised I had already given up pasta and bread. I’m not going back on gluten, as I would be ill. But I can’t get diagnosed unless I eat gluten again. It is a Catch-22.

“It would be useful to have an official diagnosis for my medical records.

“That’s way it is important to highlight the fact you need to go to the doctor before you give up gluten.

“People tend to figure out what makes them poorly, so they give it up before going to the doctor.”

Now Cheryl, a freelance sign language interpreter from Preston, has been gluten-free for two years, she has noticed a huge difference.

She adds: “I don’t know how I did it before. When I accidentally eat gluten, I can’t even go out.

“I end up feeling sorry for myself but I learnt to live with it. I accepted I would have a bad stomach and a limited food palate. I used to live off jacket potatoes as I knew that didn’t make me ill. Now I can eat anything, as long as it is gluten-free.

“I used to nap a lot but now I have so much more energy. I have a great doctor who has advised me on vitamins, as it can cause vitamin D and iron deficiency.”

As Coeliac Awareness Week takes place from May 13 to 19, the Preston and East Lancashire groups of national charity Coeliac UK are hosting a gluten free food fair at Preston’s College on Saturday, May 11.

Stallholders will be selling everything from gluten free pasta to pies, beer to brownies and freshly cooked fish and chips.

Samples will be on offer, giving visitors the chance to try before they buy, and they will also have the opportunity to meet the faces behind the gluten free brands.

Stephen Haworth, of the East Lancashire Coeliac UK group, says: “Coeliac UK estimate that there are nearly half a million people in the UK living with undiagnosed coeliac disease. They may be passing off their symptoms as other conditions since they can be so easily confused, even by health professionals.

“Through their Coeliac Awareness Week campaign, Coeliac UK aim to raise awareness of the symptoms that could indicate coeliac disease and encourage people to visit their GP for a coeliac disease blood test, particularly if they have been diagnosed with IBS as the symptoms are so similar.”

Alongside the food stalls, Coeliac UK staff will be on hand to offer advice on coeliac symptoms and getting tested for the auto-immune condition. The food fair runs from 10.30am to 2.30pm in the sports hall at Preston’s College, St Vincents Road. Entry is free.