GP and patient
Coeliac UK has cautiously welcomed NICE’s new quality standard for the diagnosis and treatment of coeliac disease, saying it hopes it drives up standards, but they remain concerned that many Clinical Commissioning Groups (CCGs) in England will not reverse blanket bans on gluten-free prescribing, leaving some vulnerable people at risk.

The new quality standard includes 5 statements:

  • People at increased risk or with symptoms of coeliac disease are offered a serological test for coeliac disease
  • People with a positive serological test for coeliac disease are referred to a specialist and advised to continue with a gluten‑containing diet until diagnosis is confirmed
  • People referred to a specialist who need an endoscopic intestinal biopsy to diagnose coeliac disease have it within 6 weeks of referral
  • People newly diagnosed with coeliac disease discuss how to follow a gluten‑free diet with a healthcare professional with specialist knowledge of coeliac disease
  • People with coeliac disease are offered an annual review.

Additionally, NICE has identified areas where health inequality needs to be addressed by healthcare professionals involved in the management of patients with coeliac disease. 

The quality standard highlights that attendance of coeliac disease annual reviews for patients in socioeconomically deprived areas needs to be improved and that enabling access to gluten-free food on prescription aids adherence to the gluten-free diet.

Yet access to gluten-free food has been stopped in 10% of CCGs and a third have introduced restrictions to it on prescription for patients with coeliac disease in England, Coeliac UK has said. These commissioning decisions have introduced unwarranted variation in the care and support offered by NHS England to patients with coeliac disease and contradicts commitments to reduce health inequalities across the UK. 

Sarah Sleet, chief executive of 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 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 frontline services, is being based on budget rather than patient need or clinical evidence.” 

One in 100 people in the UK has coeliac disease, with the prevalence rising to 1 in 10 for close family members. However, currently only 24% of those with the condition are diagnosed, leaving an estimated 500,000 people in the UK undiagnosed. 

Coeliac disease is not an allergy or an intolerance but an autoimmune disease where 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 and no medication; the only treatment is a strict gluten-free diet for life. 

The potential serious long-term health complications of not maintaining a gluten-free diet include osteoporosis, infertility and, in some rare cases, small bowel cancer, conditions that cause considerable suffering and could cost the NHS a lot more in the long run.

“We will shortly 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,” continued Ms Sleet.