Patient story: "I'm so glad I joined Coeliac UK."

Shira Groombridge had unpleasant symptoms for eight yearsbefore she was diagnosed with coeliac disease, after being suddenly taken ill and losing two stone in three weeks.

"My symptoms were severely affecting my life. I had no energy, lots of Headaches , earache and stomach ache , and I was continually bloated and constipated. My doctor thought I had irritable bowel syndrome (IBS) . Every now and then I'd have to take to bed with sickness and diarrhoea , and he would just put it down to a virus and give me antibiotics .

"I was on holiday enjoying a meal out when I was taken ill. I suddenly felt very poorly and went to bed that night shivering. The next morning I ate some dry toast obviously the worst thing to do, although I didn't know it at the time and then later collapsed in the bathroom. I came straight home and spent the next three weeks in bed. I lived off yoghurt and plain rice and lost two and a half stone.

"After that I saw another doctor, who sent me straight to a haematologist for tests. I was told it wasn't anaemia and that there was no malignancy, but the consultant wanted to test for one more thing.

"I had a blood test , and the reading was so high my haematologist told me she was almost certain I had coeliac disease. I needed a biopsy to confirm it, but it still came as an awful shock.

"While I was relieved that it wasn't cancer , the word 'disease' was frightening. It was a very emotional time.

"My consultant gave me a leaflet and set me up with a dietitian. Meanwhile, I did my own research on the internet and came across the charity Coeliac UK . I called them and they were fantastic, a real shoulder to cry on. I don't know what I would have done without their helpline in those first few weeks.

"For a couple of months, I was on antidepressants . Because my vitamin B12 status was so low, I was experiencing a lot of shaking and panic attacks , and had to have B12 injections. I was also taking calcium and iron supplements.

"I had to be wary of everything I ate, and started off eating very plain food, such as rice, meat, fish, vegetables and fruit. The first monthly supermarket shop I did, armed with my excellent book of gluten-free products from Coeliac UK, took four hours because I was carefully reading every single label.

"I've even found that some manufacturers may make a product gluten-free in one size and not gluten-free in another. Thankfully, I get pasta, bread, rolls and savoury biscuits on prescription. If it wasn't for that, I wouldn't be able to afford gluten-free foods as they can be expensive.

"Eating out is a challenge, and I hate putting friends and family out. I didn't know about the risks of cross-contamination, either, until my dietitian told me that I needed a separate toaster and butter for my partner, for example. I have to be very careful.

"My recovery has been good. In the last year, I've put all the weight I lost back on, my blood results are good and my gut has healed. The only supplement I take is calcium to safeguard against osteoporosis . I'm so glad I joined Coeliac UK and I would advise anyone who's been recently diagnosed to join."

Content supplied by the NHS Website

Medically Reviewed by a doctor on 19 Dec 2016