Following a strict gluten free diet for life is the only treatment for people with coeliac disease. This means completely avoiding food containing more than 20ppm of gluten (a protein found in wheat, barley and rye), much of which is a central part of our diet in the UK. 

Failure to stick to the diet can lead not only to debilitating symptoms but in the long term to developing other serious complications such as osteoporosis, neurological dysfunction, unexplained infertility, iron deficiency and in very rare cases, small bowel cancer. For children, long term untreated coeliac disease can have additional consequences including faltering growth and delayed puberty.  
 

Gluten free staple products play a crucial role in supporting people with the condition for both practical and nutritional reasons. Contrary to the suggestion in the ICB’s consultation document, it is not as simple as switching gluten free bread for rice and potatoes. For example, replacing an average portion of gluten free bread with a portion of rice containing the same amount of calories would reduce the iron intake by 96% and the calcium content by 90%. Similarly, replacing gluten free bread with a portion of peeled, boiled potatoes containing the same amount of calories would reduce the iron content by 71% and the calcium content by 93% [1, 2].

Gluten free staple substitute products cost significantly more than gluten containing equivalents. Coeliac UK’s recent report, The Gluten Free Diet: What does it cost and why does it matter? (2024 Update) shows that a weekly gluten free food shop can be as much as 35% extra. A loaf of gluten free bread is on average more than 4 times as expensive as a gluten containing one. And this is even worse when looking at the cheapest loaf. This is on average 6 times as expensive, disproportionately hitting those least able to afford it. A recent Coeliac UK showed 8 in 10 of those with coeliac disease struggled to afford the gluten free products that keep them well. This would be concerning at the best of times, yet we are currently living through a cost of living crisis that is hitting our community particularly hard.  

Despite progress in recent decades, it remains difficult to reliably access gluten free bread and flour in the shops, particularly if you live in rural or poorer areas [3]. In our cost and availability supermarket survey, 35% of survey respondents shopped at budget supermarkets, yet they reported no availability of gluten free bread. Gluten free pasta was only available in 1 in 10 shopping trips. Gluten free flour was not available for any of the shopping trips to budget supermarkets.

When shopping online, 1 out of 3 orders for gluten free bread loaves were out of stock and 1 out of 4 orders for gluten free flour were out of stock. Where substitutes were allowed or provided, in 1 in 3 cases they were not suitable for a gluten free diet. Out of the 15 supermarkets visited, no supermarket had availability of every item included in a weekly food shop for a gluten free diet.

The result is that our most vulnerable – those on a limited income, the elderly, or those living in remote rural areas with reduced mobility – are severely disadvantaged in maintaining their gluten free diet and this potentially risks their health. 

Gluten free prescriptions represent just 0.07% [4] of total prescribing in England and the cost to the NHS of providing gluten free bread and flour mix on prescription are overshadowed in comparison to the financial impact of treating associated conditions caused by someone not being able to stick to the diet. 

We understand that there is a need to control costs within the NHS but cutting gluten free prescriptions is a false economy; small savings in prescription costs could lead to higher treatment costs associated with poor health outcomes and increased health complications.

It costs approximately £195 a year per patient to support gluten free food on prescription. The average cost to the NHS of an osteoporotic hip fracture is £27,000 [5] – the equivalent of 138 years of gluten free prescribing. This is significant given that osteopenia and osteoporosis are found in 40% of adult patients at diagnosis of coeliac disease [6].