Patients with food allergies and health conditions affecting the digestive system are increasingly unable to afford supermarket “free-from” products, leaving them with painful symptoms or permanent damage, experts warn.
About 2.3 million people in the UK have either a food allergy or intolerance, or coeliac disease, an autoimmune disorder that leaves people unable to eat gluten.
To stay well, many have to buy free-from food, which costs much more than other produce. A report by the Food Standards Agency in 2022 calculated that adults with a food allergy, intolerance or coeliac disease already spend up to 27% more on food than those without food hypersensitivities.
In some areas, patients can get help with medical diet costs. Coeliac patients in Wales, Scotland and Northern Ireland are less at risk of long-term health complications because they can access free gluten-free bread, pasta and flour.
But the cost of living crisis has made it much more difficult, especially for people in England, to afford free-from food. In England, of the 42 integrated care boards, about a third no longer offer any gluten-free food on prescription, after NHS England said commissioners were no longer obliged to.
The latest Coeliac UK figures show that gluten-free staples are now typically 2.5 times more expensive than non-gluten-free products. A typical loaf of gluten-free bread is 4.4 times more expensive, while the cheapest gluten-free loaves are six times as expensive as their gluten-containing equivalents.
Similarly for those with an allergy to cow’s milk, the cheapest oat milk typically costs £1.30 to £1.40 a litre, more than double the typical cost of cow’s milk.
Dr Kate Evans, a consultant gastroenterologist at Royal Berkshire NHS foundation trust, says in the last year she has seen a number of patients with coeliac disease who are not sticking to their gluten-free diet because it is too expensive.
“Patients are being referred back because of ongoing symptoms such as abdominal pain, weight loss and diarrhoea,” she said. Evans said tests were showing this was because they were not adhering to a gluten-free diet.
“That’s when it comes out that they’re eating normal bread because they can’t afford gluten free. They say they are eating gluten because there is no alternative.”
This can have serious long-term health consequences. Coeliac disease is an autoimmune condition for which the only treatment is a lifelong strict gluten-free diet. Coeliacs who eat gluten are more likely to get osteoporosis and osteopenia, which puts them at increased risk of fracture and also leads to small bowel inflammation and ulceration which can cause cancer.
Prof David Sanders, a consultant gastroenterologist at Sheffield Teaching Hospitals NHS foundation trust, says patients do not always realise the risks, especially those who do not have significant symptoms. “They’re not thinking what things will happen long term. They’re just thinking about surviving now.”
Dr Gerry Robbins, a consultant gastroenterologist at York and Scarborough Teaching Hospitals NHS foundation trust, says the impact of unaffordable gluten-free food has not yet been fully felt in the NHS. “I think there’s a bigger group of these patients coming over the horizon over the next two to five years.”
The president of the Royal College of Paediatrics and Child Health, Dr Camilla Kingdon, says that for children with coeliac disease, food intolerance or allergies, having access to the appropriate free-from foods is “crucial” for their development.
“Yet paediatricians are already seeing children and their families ration or go without the necessary free-from alternatives. Without these foods, children may have gastrointestinal problems, often become unwell and even be at greater risk of mental health problems.
“It is simply not right that children from lower-income families are placed at such a disadvantage in terms of their health and wellbeing. If we are to ever truly get a handle of child health, then we must first tackle child poverty and food insecurity.”
Amena Warner, the head of clinical services at Allergy UK, says children with cow’s milk allergy whose families cannot afford alternatives such as oat or soy products could develop other health problems.
“Because these products tend to be fortified to be at least as nutritionally compatible as the food they are replacing, eliminating these from a child’s diet can carry longer-term health implications for a child’s development, such as increased risk of eczema, vitamin and mineral deficiencies,” said Warner.
Sanders said the fact that gluten-free food was no longer available to many on prescription reflected “a degree of inertia and nihilism in the medical community”. “Glulten-free food is the only treatment for coeliac disease. If it was type 1 diabetes, another autoimmune disease, we wouldn’t be asking patients to buy their own insulin.”
Tristan Humphreys, the head of advocacy at Coeliac UK, said: “It cannot be right that for so many people with coeliac disease living in England, access to such a lifeline is denied. Not because of need or means but by accident of geography alone.”
• This article was amended on 27 December 2023 to make clear that a reference to the cost of oat milk was included in relation to people with an allergy to cow’s milk, rather than to coeliacs.
