Coeliac disease is an autoimmune condition, unlike an allergy or food intolerance, in which the body’s immune system reacts when gluten, a protein found in wheat, barley and rye, is eaten, causing damage to the lining of the small bowel. There is no cure or medication available: the only treatment is a strict gluten-free diet for life.

The new Quality Standard describes the importance of ensuring that patients with coeliac disease are diagnosed as it is estimated that just 20% of patients are currently diagnosed – meaning that 500,000 remain undiagnosed in the UK. Annual reviews are important especially for those in deprived areas. Importantly, it highlights that access to gluten-free food on prescription aids adherence to the gluten-free diet.

But this may be contrary to the practice of some CCGs. In recent years, a third of CCGs across England have introduced restrictions to gluten-free food on prescription in an attempt to cut costs. This has resulted in an unwarranted regional variation – in effect a postcode lottery - in the quality of care offered to coeliac patients, and has hit patients in economically deprived areas the hardest.

Declan O’ Brien, Director General of the British Specialist Nutrition Association (BSNA) said:

“It is vital that CCGs continue to make available essential gluten free foods on prescription to medically diagnosed coeliacs. The Quality Standard confirms what coeliac patients already know - that gluten-free products are more expensive than their gluten-containing counterparts, are only available in larger retailers and that access to them is more difficult for people in rural areas, on low incomes or with limited mobility. It is especially burdensome where more than one member of the family has coeliac disease”

Coeliac disease is a lifelong condition which, unless managed effectively, leaves sufferers at risk of a variety of nutritional deficiencies and associated conditions, including infertility, osteoporosis and even bowel cancer. Mr. O’ Brien continued:

“We ask those CCGs who have limited, or even stopped, prescribing to reverse these decisions immediately. The Health and Social Care Act 2012 expects CCGs to take Quality Standards into account in planning and delivering their services unless there is a compelling reason to do otherwise. The publication of the new Quality Standard on coeliac disease reiterates how important it is for patients with coeliac disease to be able to access gluten-free food on prescription.”

The NICE Quality Standards on coeliac disease is available here.

For further information, please contact Declan O’Brien at [email protected] or on 020 7420 7112

Notes to editors

• The British Specialist Nutrition Association (BSNA) is the trade association representing manufacturers of high quality foods designed to meet the needs of people with special nutritional requirements. Our members produce infant formula, follow-on formula, complementary weaning foods, gluten-free foods, medical foods and parenteral nutrition. For more information see www.bsna.co.uk
• The new Quality Standard on coeliac disease is available at https://www.nice.org.uk/guidance/QS134
• Coeliac disease is a lifelong autoimmune condition where the body’s immune system reacts to gluten found in food, making the body attack itself.
• 1 in 100 people in the UK has coeliac disease
• A wide range of case studies are available on request from Coeliac UK.
• Average time to diagnosis is 13 years.
• 1 in 4 people diagnosed with coeliac disease had previously been diagnosed with IBS.
• Gluten is a protein found in wheat (including spelt), rye and barley. Some people are also sensitive to oats. Obvious sources of gluten include breads, pastas, flours, cereals, cakes and biscuits. It is often used as an ingredient in many favourite foods such as fish fingers, sausages, gravies, sauces and soy sauce.