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Delay in coeliac disease diagnosis risks neurological damage

Coeliac UK, the largest independent charity for people who need to live gluten-free, says that delayed diagnosis of coeliac disease is creating a growing health problem across the UK with undiagnosed patients at risk of suffering with complications of the disease including irreversible neurological damage.

In its 50th anniversary year, the charity is urging health professionals and the general public to take coeliac disease seriously. During its Awareness Week activities (14 - 20 May 2018) Coeliac UK was highlighting the symptoms and emerging evidence relating to previously unknown complications of the autoimmune disease.

Chief executive Sarah Sleet says that even though awareness of coeliac disease has grown, there still exists a perception that the disease is not that serious because it requires a gluten-free diet as its medical treatment.

“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,” she says. “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.”

In a study of patients with newly diagnosed coeliac disease, who had been referred to a gastroenterology clinic, around three out of five had established neurological symptoms including severe headache (45%), balance problems (26%) and sensory symptoms (14%).

“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,” Sleet adds.

One in a hundred people in the UK has coeliac disease but around half a million people in the UK are currently undiagnosed. It still takes an astonishing 13 years on average for a person to be diagnosed. Although many people present with a range of symptoms including those that are gut related, other symptoms include mouth ulcers, anaemia, repeated miscarriages and neurological problems.

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