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It’s Coeliac Awareness Week and this is the financial burden of a gluten-free diet to stay healthy

BBC presenter Ellie Colton, 23, was relieved when doctors finally found the answer to her worrying symptom after several misdiagnoses – coeliac disease, a condition where a person’s immune system attacks their own tissues when they consume gluten. 

But not only was she warned that the damage to her gut was “really bad”, she also had to take on the financial burden of a strict, gluten-free diet.

Originally from Sheffield, Colton rents a property in Manchester for £1,200 per month and cares for her pug Luna. She says gluten-free food is “simply unaffordable” and living alone is a worry as it “costs way more than the average person to feed” herself. A 2018 UK study showed that gluten-free foods on average costs 159 per cent more than their conventional counterparts.

“I don’t want to be paying an extra £80 per month just to eat properly,” she tells i, “I don’t buy cakes, crisps, biscuits or treats as I did because it’s just way too expensive. It’s embarrassing if you’ve got friends coming over and you can’t put on a spread like you used to.”

Coeliac disease affects 1 in 100 people in the UK but only 30 per cent of people are currently clinically diagnosed, according to Coeliac UK. If a strict gluten-free diet is not followed, complications such as cancer of the small bowel and unexplained infertility problems can occur.

When Colton first started showing symptoms including behavioural issues, nausea, joint pains and bloating at 12 years old, doctors diagnosed her with Osgood Schlatter disease, a condition that causes swelling below the knee joint.

What followed was a misdiagnosis of a Bakers cyst, formed when fluid fills a cushioning pouch on the back of the knee, and Juvenile Idiopathic Arthritis, a form of arthritis in children. It wasn’t until doctors considered her sickness that they sent her for tests that later confirmed she had coeliac disease.

Gastroenterology dietician Cristian Costas, who has set up a national award winning dietetic-led coeliac service in the UK, says that the gluten-free diet can be a constant burden for those suffering and Norwegian research shows it to be up to 433 per cent more expensive.

And the hefty price tag isn’t the only challenge. Colton recalls choosing a gluten free chicken and mayonnaise sandwich in Hathersage aged 18 and the waiter asking if it was okay that the mayonnaise had a little bit of gluten in it. Despite knowing that the sauce naturally doesn’t contain gluten, she realised “the kitchen nor the staff had any idea how serious coeliac is”.

And apparently, the Hathersage waiter is not alone. Questions like “one crumb won’t hurt though, will it?” and assumptions such as “if it’s just one-off then it won’t affect you” has caused food anxiety for the 23-year-old who is forced to have serious conversations with every server at a restaurant before she can order food when out with friends.

“Gluten free has been wrongly labelled as a fad diet thanks to the Kardashians. It makes mine, and every other person with Coeliac Disease’s skin crawl. It’s anything but a fad. It can be really isolating when people around you don’t understand.”

“When I started eating gluten free there wasn’t even a free from aisle,” says 32-year-old Sarah Howells, who has lived with coeliac disease for 20 years. Since being diagnosed as a young teen in 2002, she has always found the cost of her diet to be more expensive.

The reason for the additional expense is that gluten-free foods undergo additional safety and quality checks, require different ingredients and equipment to ensure those with coeliac disease will not be harmed. As little as 20mg, or one crumb, can attack the small intestine, says Costas. This, added to the extra cost of separate utensils and toaster bags to avoid cross contamination, forces those with no choice to constantly pay more.

“It upsets me to see people struggling to get hold of basic foods such as bread because of increasing bills,” Howells tells i. The rising prices of things like gas have left many in England struggling for essentials and choosing between heating and food. For struggling coeliacs, the extra cost of their food shop is a burden – a loaf of free-from bread can cost upwards of £3.50 compared to a conventional loaf that can be as little as 36 pence.

Howells, who is a full-time gluten-free food blogger, advocates buying in bulk where possible from online free-from suppliers and freezing homemade food to save money. “Shopping at different places is really helpful,” says Costas who suggests that a naturally gluten-free diet with products such as rice, vegetables, fruits and eggs is both cheaper and more nutritional.

Apps such as Gluten Free Food Checker allows people to scan barcodes and find out what foods on the shelves are naturally safe. Costas says the £1.25 monthly fee for the app can save people with coeliac disease money in the long run as they can shop for conventional, but safe, food products.

Coeliac Awareness Week runs from 9 to 15 May - Reference: Kia-elise-green