York mum’s battle with coeliac disease turns to campaign

Sophie Fisher, 43, from York, has shared her battle after being diagnosed with coeliac disease after a series of unexplained medical issues that affected her life.

The mum of twins says that she spent years struggling with unexplained abdominal pain, exhaustion, and urgent diarrhoea – symptoms that began after the birth of her twin sons and a series of emergency surgeries.

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Her health problems included a burst appendix, which perforated her bowel and led to emergency surgery; two years later, she was hospitalised again with an infected gallbladder, which was also removed.

Despite her ongoing digestive symptoms, Sophie said the issues were repeatedly attributed to scar tissue or post-surgical changes, with symptoms making day-to-day life unpredictable.

It was only after seeing a different GP – who asked why she had never been tested for coeliac disease – that she finally received a diagnosis for the autoimmune condition, which was confirmed by a blood test and endoscopy.

Sophie said: “When I got the diagnosis, I was absolutely gutted. Nobody wants to hear that they have to change everything they eat for the rest of their life. But at the same time, it was a relief to finally know I wasn’t imagining it.”

Coeliac disease affects around one in 100 people in the UK and causes the body’s immune system to attack the small intestine when gluten is consumed, leading to malabsorption of nutrients.

Sophie at Zip World with her family (Image: Guts UK)

The only treatment is a strict, lifelong gluten-free diet, with Sophie adding that adapting to a gluten-free diet has been challenging “both physically and emotionally”.

She said: “For years, being dismissed had made me feel like I was going mad. Managing coeliac disease day-to-day is hard work because it takes a lot of planning.

“I can’t just grab food when I’m hungry like other people can. Cross-contamination is a huge issue. I recently had blood tests showing gluten even though I hadn’t knowingly eaten any.”

She added that it had a significant emotional impact on her life, saying: “Emotionally, it can feel really isolating. I feel like ‘the awkward one’ all the time, even though it’s completely outside my control.

“Even simple days out can feel quite sad sometimes. The best way I can describe it is going to the coast and everyone wanting to just grab some chips and an ice cream, and I can’t.

Sophie and her family in matching pyjamas (Image: Guts UK)

“I’ve literally had to run across restaurants halfway through meals because of symptoms.”

Ms Fisher is sharing her story as part of Guts UK’s new campaign, Let’s Talk Guts, which aims to break the stigma around digestive symptoms and encourage people to seek medical advice.

She said: “I wish people understood that coeliac disease is an autoimmune disease. It’s not me being fussy or choosing not to eat gluten.

“I hope that if somebody else is feeling the way I felt before I was diagnosed, they might read my story and recognise something in it.

“If it helps someone push for answers or feel understood, then that’s really important to me.”

Running from July 13 – 19 , Guts UK has launched a campaign encourages people to have more open conversations about digestive conditions and symptoms, recognise when symptoms may need medical attention and feel confident talking about their guts with friends, family, colleagues and healthcare professionals.