A York woman, Sophie Fisher, 43, is advocating for greater awareness of coeliac disease after her severe pain was dismissed for years as complications from a Caesarean section and subsequent operations. Fisher, who stated she had "totally got used to the pain," spent half a decade seeking answers for her debilitating symptoms before finally receiving a diagnosis.
Fisher's health struggles began in 2016 following the birth of her twin sons. Twelve weeks after their arrival, she became acutely ill, requiring emergency surgery for a burst appendix and perforated bowel. Despite numerous hospital visits and additional operations, including the removal of her gallbladder, her persistent pain and discomfort were consistently attributed to scar tissue from these procedures.
Recalling the period, Fisher expressed frustration at feeling her concerns were being dismissed. "Because of these operations, when I went back with the issues with my pain, they'd say it was lesions," she explained. This repeated explanation left her feeling unheard and as though she "was going mad" due to the ongoing, unexplained suffering.
The turning point came in 2021 when, following worsening symptoms, Fisher consulted a locum doctor who suggested a blood test for coeliac disease. The test returned positive, and a subsequent endoscopy confirmed the diagnosis. "It was a relief to finally know I wasn't imagining it," Fisher commented, highlighting the emotional toll of the prolonged misdiagnosis.
Upon switching to a gluten-free diet, Fisher experienced a dramatic improvement in her symptoms, which had included severe abdominal pain, bloating, and exhaustion. Her experience underscores the challenges in diagnosing coeliac disease, particularly when symptoms can be masked by other complex health conditions.
Guts UK, a charity dedicated to supporting individuals with digestive conditions, estimates that while approximately one in 100 people in the UK have coeliac disease, a significant proportion – around 70% – remain undiagnosed. Julie Thompson, an information manager at the charity, noted that Fisher's case "highlights how complex digestive health can be," and how existing serious health issues can unfortunately obscure coeliac disease symptoms, leading to misattribution.