'I had got used to the pain of coeliac disease'

A woman whose coeliac disease was "dismissed" for years as a symptom of a difficult Caesarean section is seeking to raise awareness, saying she had "totally got used to the pain".

Sophie Fisher, 43, from York, was told by doctors the severe pain she experienced was down to scar tissue she had sustained after her twin sons were born in 2016.

It was five years later, in 2021, that she was diagnosed with coeliac disease, which causes the body's immune system to mistakenly attack the lining of the small intestine when gluten, found in grains such as wheat, barley and rye, is eaten.

Fisher said: "I do wish I would have been diagnosed a lot earlier, it would have made life a lot more simple."

Twelve weeks after her sons were born, Fisher became ill and later discovered her appendix had burst and perforated her bowel which required emergency surgery.

"It got worse and worse and I decided to go to the doctor's and they rang me an ambulance straightaway because they didn't know what was wrong," she said.

"I don't know how long it had been happening for but it was a real mess, I was very poorly at the point."

After a number of trips to hospital and several operations including having her gallbladder removed, Fisher was feeling no better and this was attributed to scar tissue from surgery.

"Because of these operations, when I went back with the issues with my pain, they'd say it was lesions," she said.

Fisher returned to her GP following worsening symptoms and was eventually advised by a locum doctor to take a blood test for coeliac disease which came back positive.

A subsequent endoscopy then confirmed the diagnosis.

"Around 2021 I finally found out I had coeliac disease rather than it being pain from the operations," she said.

"It was a relief to finally know I wasn't imagining it. For years, being dismissed had made me feel like I was going mad."

Fisher switched to a gluten-free diet and her symptoms, which included severe abdominal pain, bloating and exhaustion, improved.

Charity Guts UK, which supports people affected by digestive conditions and symptoms, estimates about one in 100 people in the UK have coeliac disease but about 70% of people with the disease remain undiagnosed.

Information manager Julie Thompson said: "Sophie's experience highlights how complex digestive health can be.

"She experienced a number of serious health conditions over several years, which unfortunately masked the symptoms of coeliac disease and led to them being attributed to other causes."

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