Around 20,000 people have signed a petition in support of protecting gluten free prescriptions for people with coeliac disease. Part of a campaign by national charity Coeliac UK, it will be delivered to 10 Downing Street today as part of a day of action in Westminster that will bring together patient representatives, health care professionals and parliamentarians from across the political spectrum.

For those diagnosed with coeliac disease, a serious autoimmune condition affecting 1 in 100 people in the UK, a strict gluten free diet is the only treatment and a medical necessity. When people with coeliac disease eat gluten - a protein found in wheat, barley and rye - their body attacks its own tissues. If left untreated, it can cause gut damage and serious health complications.

Access to gluten free staple foods through NHS prescriptions has been a lifeline to those managing symptoms, preventing long-term health issues. However, recent policy changes in Integrated Care Boards (ICBs) across England have led to numerous regions withdrawing this critical support at a time when gluten free food is becoming unaffordable for many.

A recent Cost of Living Report from Coeliac UK highlights the financial challenges faced by those needing to follow a strict gluten free diet. On average, a loaf of gluten free bread is more than four times as expensive than its gluten containing equivalent, gram for gram. For those on a budget, the disparity is even greater, with the cheapest gluten free loaf costing over six times as much as a gluten containing loaf, gram for gram. Overall, a weekly gluten free food shop can be up to 35% more expensive than a regular shop.

The report underscores the financial strain placed on individuals with coeliac disease, particularly those from low-income households. As a result of numerous ICBs in England withdrawing prescriptions, such as Leicester, Leicestershire and Rutland, and Hampshire and Isle of Wight, many individuals with coeliac disease now face the challenging reality of being unable to afford the staple gluten free substitutes they need to stay well.

The Coeliac UK petition calls upon the UK Government to take immediate action to safeguard access to gluten free staple substitutes via NHS prescriptions by issuing updated guidance to ICBs. In addition, it asks for collaboration with Coeliac UK and healthcare professionals to establish and share best practices for protecting access to gluten free prescriptions.

Tristan Humphreys, Head of Advocacy and Public Affairs at Coeliac UK, said: “In recent years, many ICBs have withdrawn this much needed provision, often failing to take meaningful account of public consultations, drawing on flawed evidence and without due regard to impacts on health inequalities. In some cases, they have failed to engage with patients altogether. We cannot stand by while patients with coeliac disease are left without the essential support they need."

“Untreated coeliac disease can lead to debilitating symptoms and puts the individual at risk of serious health complications. This is not only devastating for those living with this serious autoimmune condition but bad news for the health service that has to pick up the tab for treating expensive associated conditions as a result."

"For people with coeliac disease, access to gluten free bread and flour on prescriptions is a lifeline not a luxury. It is critical in supporting patients to stay well and preventing the cost of ill health down the line.”

Dr Hugo Penny, Gastroenterologist at Sheffield Teaching Hospitals NHS Foundation Trust and Clinical Lecturer at the University of Sheffield said: “A strict gluten free diet is the only effective treatment for those with coeliac disease. Access to gluten free bread and flour therefore plays a crucial role in keeping my patients well. Unfortunately, I have seen patients without access to support on prescription struggling to afford the staple gluten free substitute foods they need."

“Ultimately it will be the least able to afford the additional costs of this medically prescribed diet that are hit hardest. It is for this reason that our local ICB (South Yorkshire) chose to re-instate prescriptions in Sheffield on health equality grounds. I would urge the Government to look to this example and ensure other commissioners follow suit."

Also attending the petition hand-in is Kate Powell, from Waterlooville in Hampshire. As a mother to two daughters with coeliac disease, she was directly affected when Hampshire & Isle of Wight ICB withdrew gluten free prescriptions in 2024, leading to increasing costs to maintain her two daughters’ diets. Kate said: “Prescriptions were a vital lifeline before they were removed, and we’re now spending on average an extra £10 to £15 on our weekly shop because of it. Anything in the ‘free from’ aisle is really expensive. We’ve tried to cut down on bread but it’s really hard and has a big impact on us as a family. Availability is also an issue, and we’ll typically need to visit two or three shops to get everything we need for the girls.”

First degree family relatives of someone with coeliac disease have an increased risk, 1 in 10, of having coeliac disease themselves. This means many households will have more than one family member reliant on access gluten free staple substitutes.

Coeliac UK is encouraging people to call on the UK Government to uphold its commitment to health equality and ensure that those with coeliac disease have access to the gluten free staple substitute foods they need to thrive.

Tristan added: “This petition hand in marks an important step in making a real difference to the affordability of gluten free food. The reality for too many people across the UK with coeliac disease is that the food that keeps them well is too expensive and hard to access. This is bad news for the NHS that has to treat resultant health complications and devastating for the individuals impacted."

"We hope that the UK Government will take notice of our concerns, and those of patients, healthcare professionals, and supportive MPs who recognise the essential role of gluten free staple substitute foods in managing coeliac disease. We welcome the Government's commitment to prevention of ill health and are optimistic that together we can address the postcode lottery of healthy inequity for patients with coeliac disease.”