It's hard to imagine how anyone could unknowingly have coeliac disease, the auto-immune disease caused by a reaction to the gluten in wheat, rye and barley. Symptoms include severe mouth ulcers, crippling fatigue, stomach pain, regular bouts of diarrhoea, anaemia and weight loss. Yet the average time from symptom onset to diagnosis is 13 years.

Why? Norma McGough, director of policy, research and campaigns at the national charity Coeliac UK explains: “Sometimes the symptoms can be mild, and though it is a gut disease, they can affect other parts of the body. It is a chronic lifelong disease so some people with coeliac disease may think that the way they feel is just normal for them.”

Medical professionals also commonly misdiagnose coeliac disease.  “A quarter of people with coeliac disease have been treated for irritable bowel syndrome,” says McGough.

Late diagnosis can mean years of pain and discomfort, and is linked to nutritional deficiencies, osteoporosis, cancer of the small bowel and unexplained infertility. Unidentified coeliac disease also results in spending on unnecessary investigations by the NHS.

 

Treatment options

 

The good news is that coeliac disease once diagnosed is treated with a gluten-free diet. Diagnosis starts with a blood test to check the level of antibodies produced when people are on a normal gluten-containing diet. This can result in a false negative, however, if people with symptoms voluntarily reduce their gluten intake. Moreover, 2 per cent of people with coeliac disease, when tested, give a misleading low result due to a deficiency in the specific antibodies, more prevalent in coeliac disease.

McGough says: “NICE guidelines recommend eating a normal gluten-containing diet for six weeks before the blood test.'

If the blood test appears positive, or where the test is negative but the disease is still clinically suspected, patients are referred to a gastroenterologist for a gut biopsy.

A positive diagnosis means a strict gluten-free diet for life. Gluten-free staples such as flour and pasta are often available on prescription but in some areas of England have been withdrawn, despite costing a mere £194 a year per patient according to NICE. McGough says: “This is an area of concern as the most vulnerable groups may not be able to afford gluten-free foods. For the NHS it could be a false economy.”

It’s important to keep campaigning to increase early diagnosis by raising awareness, especially among young adults, and among healthcare professionals.

Coeliac UK runs an awareness week from 9-15 May which focuses on the question ‘Is it coeliac disease?’  encouraging people to get tested – especially those with unexplained or intermittent anaemia, which can be linked to coeliac disease.

It will also be offering tests at week-long street events in Manchester, Glasgow, Newcastle and Birmingham, backed by local radio and press campaigns.

You could also complete an online assessment to test your risk of coeliac disease at isitcoeliacdisease.org.uk, which was launched last year. McGough says: “Coeliac disease is completely treatable with a gluten-free diet which has no side-effects. Getting early diagnosis is a no brainer.”