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Coeliacs 'waiting 11 years for diagnosis'

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Around one in every four people with an intolerance of the protein gluten will not have their condition diagnosed by their doctor for 11 years, according to research by a national charity.

A further 11% of patients will spend more than 20 years trying to get help from their doctor.

The illness, known as coeliac disease, causes abdominal pain, diarrhoea and bloating. Coeliac disease occurs when the body’s immune system treats gluten as a foreign organism.

The protein is found in wheat, barley and rye and those with the disease tend not to be able to eat breakfast cereals, most types of bread, pasta and cakes. The disease can lead to infertility, growth defects and osteoporosis if left untreated.

Around one in every 100 people have the disease in the UK, although two to three times as many women have it than men.

The survey of 1,600 people who have coeliac disease found that as many as six in 10 of them were told by their GP that they had anaemia, without even being tested. Other people said they were diagnosed with appendicitis, ulcers, ME, chronic fatigue syndrome, anxiety, depression, gastroenteritis or gallstones.

Around a third of the survey respondents said their GP’s knowledge of coeliac disease was either “poor” or “very poor”. At least half of them said they were also told they had irritable bowel syndrome.

Sarah Sleet, who runs the Coeliac UK charity which carried out the survey, said GPs’ attitudes to the disease need to change.

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Readers' comments (1)

  • This fits with my experience exactly. In the end it was a combination of self diagnosis and a sympathetic Junior Doctor which got me the help I needed. I was virtually incapcitated for a year before a medic said "perhaps you should give up wheat". Since then lack of knowlege has delayed the eventual diagnosis of coeliac disease in my very young child despite him already having acondition that put him at risk of coeliac disease along with the family history.

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