“Over half a million people in the UK have undiagnosed coeliac disease,” says Norma McGough, Director of Policy, Research and Campaigns at Coeliac UK.

“Diagnosis takes – on average – 13 years, and it's common for people to go undiagnosed until they are middle aged or older, despite many GP visits. That is why we want to increase awareness of coeliac disease among primary care professionals as well as the public.”

One of the problems is that the symptoms are common to many digestive problems.  Symptoms of coeliac – an auto-immune disease caused by a reaction to the gluten in wheat, rye and barley – include mouth ulcers, fatigue, stomach pain, diarrhoea, anaemia and weight loss.

Misdiagnosis is common. “A quarter of people with coeliac disease have been treated for irritable bowel syndrome (IBS),” says McGough.

 

The importance of early diagnosis

 

In coeliac, inflammation of the gut lining leads to nutrient malabsorption. Over time this can lead to iron deficiency anaemia, vitamin B12 deficiency and calcium malabsorption, increasing the risk of osteoporosis. Early diagnosis and treatment with a gluten-free diet can reverse loss of bone mass within a year, but if diagnosis is delayed until after 30 or after the menopause, the chances are much lower.”

 

Ask for a blood test

 

A simple blood test can show the levels the antibodies produced in response to gluten, and indicate the likelihood of coeliac disease. This is not a definite diagnosis, but can be a fast way of almost definitely ruling it out. Those preparing for the test should remain on a gluten-containing diet for a period before the test, or it could deliver a false negative” says McGough.

 

Is coeliac different from intolerance?

 

“Coeliac is an auto-immune disease that is genetically linked, but food intolerance does not affect the immune system,” says McGough. “Children, in whom food intolerance is more common, often grow out of it, but you do not grow out of coeliac disease.”

Research is underway into the use of enzymes to treat coeliac disease, but only as an adjunct to the main treatment – a gluten-free diet.

Patients can be prescribed gluten-free foods on the NHS, but this is not available everywhere. “It is postcode lottery,” says McGough. “The extra cost of buying gluten-free food is estimated at £10 a week. That is a low-cost treatment for the NHS, but for people on low incomes, that adds around 25 per cent to their typical food bills.”  The policy has recently been recently researched and results are expected soon.

Meanwhile, Coeliac UK is examining data obtained from on-street blood tests offered as part of its awareness campaigns in 2015 and 2016, and working to increase awareness of the high levels of undiagnosed coeliac disease.

McGough says: “If you have symptoms that might indicate coeliac disease, and they are recurrent,  ask your GP for a test.”