Many GPs are failing to spot and diagnose patients with coeliac disease, according to a watchdog has warned.
The National Institute for Health and Care Excellence (NICE) said that coeliac disease, an autoimmune disease caused by a reaction to gluten, is ‘underdiagnosed’ - particularly in primary care settings.
It warned that patients who go undiagnosed can suffer from long-term complications including cancer and osteoporosis as well as suffering painful symptoms such as abdominal bloating and painful cramps.
Coeliac disease is an autoimmune condition associated with chronic inflammation of the small intestine which is caused by a reaction to gluten.
According to the charity Coeliac UK, one in 100 people in the UK has coeliac disease, with the prevalence rising to one in ten for close family members.
However, figures show only 24 per cent of those with the condition are diagnosed, leaving an estimated half a million people in the UK living with the condition without knowing about it.
It also takes, on average, a person with the disease 13 years to be diagnosed.
The health body has set out a new quality standard to encourage better care for the 530,000 people in England who have, or suspected to have, the condition.
Those who are suspected to have the condition, or at increased risk of having it, should be offered a specific blood test for coeliac disease, Nice said.
According to the watchdog, once the problem is diagnosed, patients should be given advice on how to follow a gluten free diet with a healthcare professional with specialist knowledge of coeliac disease and they should be offered an annual review.
"Coeliac disease is underdiagnosed, particularly when people present in primary care and other non-specialist settings," the quality standard states.
"Delayed diagnosis is a concern because of the possible long-term complications of undiagnosed coeliac disease."
Professor Gillian Leng, deputy chief executive and director of health and social care at Nice, said: "If coeliac disease goes undiagnosed, people not only have a poor quality of life they may go on to suffer other serious complications such as osteoporosis or cancer.
"Our quality standard calls for wider use of blood tests for anyone who shows symptoms or those that are at increased risk as soon as possible to rule out the condition.
"The quality standard also sets out priorities for people once they have received a confirmed diagnosis. This includes making sure they speak with a dietitian or specialist in coeliac disease about how to manage their diet and also offering them an annual review.
"These statements will help drive up standards up care so that the thousands of people living with coeliac disease in this country will have a better quality of life."
Sarah Sleet, chief executive of the charity Coeliac UK, said: "Thousands of people with coeliac disease are missing out on the standard of care recommended by Nice as the ongoing support offered by the NHS varies from one clinical commissioning group (CCG) to another.
"As NICE quality standards are developed in line with clinical evidence and expert consensus, it is clear that the decision by some CCGs to remove vital front-line services is being based on budget rather than patient need or clinical evidence."
"We will be writing to all CCGs in England highlighting the new quality standard on coeliac disease and hope that they will be taking all the suggested prioritised statements on board when caring for those with coeliac disease."
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