It’s Celiac Week and that’s the financial burden of following a gluten-free diet to stay healthy

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BBC presenter Ellie Colton, 23, was relieved when, after several misdiagnoses, doctors finally found the answer to her worrying symptom: celiac disease, a condition in which a person’s immune system attacks your own tissues when you eat gluten.

Not only was she warned that the damage to her gut was “really bad,” but she also had to face the financial burden of a strict gluten-free diet.

Colton, originally from Sheffield, rents a property in Manchester for £1,200 a month and looks after her pug Luna. She says gluten-free food is “simply unaffordable” and that living alone is a concern because “it costs much more than the average person to support themselves.” A 2018 British study showed that gluten-free foods cost, on average, 159% more than their conventional counterparts.

Ellie Colton says she’s worried about the financial cost of caring for her pug Luna

“I don’t want to pay £80 more a month just to eat well,” he says. I, “I don’t buy cakes, chips, cookies or candy like I used to because it’s too expensive. It’s embarrassing when friends come to visit and you can’t put on a quilt like before.”

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

When Colton began showing symptoms of behavioral problems, nausea, joint pain and swelling at age 12, doctors diagnosed him with Osgood-Schlatter disease, a condition that causes inflammation below the knee joint.

What followed was a misdiagnosis of Baker’s cyst, which develops when fluid fills a padded pocket at the back of the knee, and juvenile idiopathic arthritis, a form of arthritis in children. It was only when the doctors took her illness into account that she sent her for tests, which later confirmed that she had celiac disease.

Colton presents for BBC Sheffield and BBC Manchester

Gastroenterologist dietician Cristian Costas, who has set up a national award-winning dietary service in the UK, says the gluten-free diet can be a constant burden for sufferers and Norwegian research shows it is up to 433% more expensive.

And proud pricing isn’t the only challenge. Colton remembers choosing a gluten-free chicken and mayonnaise sandwich at Hathersage when he was 18, and the waiter asked if it was okay for the mayonnaise to have a little gluten. While he knew the sauce was naturally gluten-free, he noted that “the kitchen and staff had no idea how serious celiac disease was.”

And apparently the Hathersage waiter isn’t alone. Questions like “a crumb never hurts, right?” and assumptions like “if it’s on time it won’t affect you” have sparked food anxiety in the 23-year-old, who is forced to have serious conversations with every waiter in a restaurant before she can order food when she’s out with friends.

Lack of knowledge about celiac disease has made Ellie Colton afraid to eat

“Gluten-free was mislabeled as a dietary trend thanks to the Kardashians. It makes me and everyone else with celiac skin crawl. It’s anything but a fad. It can be really isolating when the people around you They don’t understand you.”

“When I started eating gluten-free, there wasn’t even a day off,” says Sarah Howells, 32, who has had celiac disease for 20 years. Since she was diagnosed when she was a teenager in 2002, she found that the cost of her diet was increasing more and more.

The reason for the extra cost is that gluten-free foods undergo additional safety and quality checks, require different ingredients and equipment to ensure that celiacs are not harmed. As little as 20 mg or a crumb can attack the small intestine, says Costas. This, coupled with the additional costs of separate utensils and toaster bags to prevent cross-contamination, forces those who have no other choice to constantly pay more.

“It worries me to see people struggling to meet basic necessities like bread due to rising bills,” says Howells. I. Sky-high prices for things like gas have left many in England struggling to find basic necessities, choosing between getting warm and eating. For people with celiac disease, the extra cost to your grocer is a liability: a free loaf of bread can cost up to £3.50 compared to a traditional loaf, which can cost as little as 36p.

Sarah Howells is 20 years gluten-free this year (Photo: Twisty Focus)

Howells, who is a full-time gluten-free food blogger, advocates buying in bulk whenever possible from online vendors and freezing homemade foods to save money. “Shopping at different places really helps,” says Costas, who suggests that a naturally gluten-free diet with items like rice, vegetables, fruit and eggs is cheaper and more nutritious.

Apps like Gluten Free Food Checker allow people to scan barcodes and find out which foods are intrinsically safe on the shelves. Costas says the £1.25 monthly fee for the app can save people with celiac disease money in the long run by allowing them to buy conventional but safe food.

Celiac Disease Week takes place May 9-15

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