As part of its Awareness Week this month (14-20 May), the charity is urging health professionals and the general public to “take the disease seriously” claiming that “there is still a perception that it’s not that serious because it requires a gluten free diet as its medical treatment.”
With undiagnosed patients at serious risk of suffering, Coeliac UK is driving awareness of the symptoms and complications, including severe headaches, osteoporosis, infertility, balance problems, sensory symptoms and “although rare”, small bowel cancer.
Chief executive Sarah Sleet explained: “Many see coeliac disease as just a disease of the gut, when in fact it is a systemic disease that can affect other parts of the body.
“A coeliac disease diagnosis is often missed because the patient is not presenting with gut symptoms, but rather they may present with neurological symptoms and are directed to a neurologist rather than a gastroenterologist.”
“Delayed diagnosis of coeliac disease is associated with development of neurological conditions such as gluten ataxia and gluten related neuropathy, which can have lifelong debilitating impacts.”
According to the charity, it takes 13 years on average for a person to be diagnosed with coeliac disease in the UK and by then, “the damage is irreversible and they face a lifetime of debilitating symptoms.”
“The longer the symptoms go untreated, the more likely there will be no or limited improvement in the condition.”
While sufferers – an estimated 1 in 100 Brits - must maintain a strict gluten free diet for the rest of their life, Sleet added: “Coeliac disease is one of the most understood autoimmune conditions and therefore has potential for finding answers to other autoimmune diseases such as type 1 diabetes.
“This makes coeliac disease research a much more appealing proposition because it means it has the potential