The Real Cost of Living with Coeliac Disease
For the one in a hundred individuals diagnosed with coeliac disease in the UK, alongside the estimated half a million still undiagnosed, the journey goes far beyond medical terminology and diet sheets.
In fact, it is often a daily battle involving relentless vigilance, daunting supermarket bills and the isolation of feeling ‘different’ every single mealtime.
The Burden of Diagnosis
For many Britons, the cost of coeliac disease begins long before they ever see a specialist, often with years of unexplained symptoms and mounting frustration.
Olivia Smith's, 34 and from Manchester, experience reflects a common reality. She said: “I noticed the fatigue about four years ago. I had to nap every day for two or three hours. Every cold that went around, I caught it. I was poorly all the time.”
Repeated GP visits didn’t bring clarity.
Smith said: “My blood tests kept showing vitamin deficiencies. But each time, the doctors just treated the symptoms. They’d say, ‘you’re low on B12’ or ‘you’re low on vitamin D’ and never went deeper.”
It wasn’t until multiple visits paired with her own persistence that a test for coeliac disease was finally ordered. Even then, she said her journey dragged on as she endured the process for 12 months from her first blood test to receiving her final biopsy results, all the while feeling as though no one was taking her concerns seriously.
The average adult waits 13 years from the onset of symptoms to an official diagnosis, one of the longest lags for any common disease in the NHS. As Smith said: “Even after my positive blood test, I was told I needed to keep eating gluten until my biopsy. I knew it would make me sick, but it was the only way to get answers. Those two months, I was almost housebound.”
After confirming her diagnosis, the patient received little formal support. She said: “All I ever got was a copy of the letter sent from the hospital to my GP, full of medical jargon.
“The only thing for me was a link to Coeliac UK; it was just ‘here you go,’ instead of a proper conversation about what this would mean for the rest of my life."
Delays in diagnosing coeliac disease are linked to a significant increase in long-term health risks. Prolonged untreated coeliac disease can lead to complications such as osteoporosis, infertility and bowel cancer. Meanwhile, continued exposure to gluten causes ongoing damage to the gut, meaning that each year without diagnosis may worsen a person’s overall prognosis.
Extended diagnostic timelines may also drive some patients to seek private medical appointments or testing, often at significant expense. Private blood tests for coeliac antibodies can cost up to £120, while a single specialist consultation may add another £250. A private endoscopy with biopsy, considered the gold standard for diagnosis, ranges from £1,000 to £2,000, on the other hand.
Almost half of respondents reported using online forums for advice or felt pressured to seek private consultations to receive answers faster, as highlighted by a Coeliac UK 2021 survey.
Punished at the checkout
The weekly food shop can be a source of stress for many as gluten-free basics come with price tags that far exceed their standard counterparts.
A gluten-free shop can cost up to 20% more, with this financial strain affecting 7 in 10 shoppers, and almost 27% to opt for 'may contain' products to save money. With 77% struggling to afford gluten-free items, the affordability crisis is significant.
Smith said: “A packet of pitta breads for a ‘normal’ person is a pound. Gluten-free? Nearly four. The cost is eye-watering, and the quality subpar. My GP never even told me prescriptions were possible."
NHS prescriptions for gluten-free foods have now become increasingly difficult to access in England, creating a 'postcode lottery'. In the past, those with an official diagnosis could routinely receive staples such as gluten-free bread, pasta, and flour mixes on prescription, helping to offset the high cost of these foods.
Yet, NHS England has since issued new guidelines in 2018 which has strictly limited the service. Now, more than half of people in England with coeliac disease live in areas where gluten-free food is no longer routinely available on prescription. Access depends entirely on where you live as some NHS trusts continue to allow basic prescriptions, while others have ended the service altogether.
By contrast, in Scotland, Wales and Northern Ireland, gluten-free prescriptions for coeliac patients remain widely available.
Kirsten Jackson, British Dietetic Association spokesperson, also offered insight into the NHS gluten-free prescription 'postcode lottery' policy.
“This hits lower income patients hardest, especially when they aren’t offered support from a dietitian to help find affordable, naturally gluten-free options", she said.
She explained that people may spend more than necessary on highly marketed ‘free-from’ foods because labelling laws can be confusing and adequate information is often not provided at diagnosis.
Jackson said: "Sometimes, basic foods like certain ready meals, snacks and carbohydrates such as rice or potatoes are already gluten-free and far cheaper than branded substitutes. But patients need tailored education from dietitians for this to make a difference”. With improved food labelling paired with proper dietetic support at diagnosis, she believes patients can save money and eat safely.
Still, for those struggling most, the removal of NHS prescriptions sometimes prevents people from following a strict gluten-free diet which can provoke damaging health consequences.
Jackson warned: “We’re seeing people in real financial difficulty just not following the gluten free diet. That only increases their risk of complications like anaemia or bowel cancer, which costs the healthcare system much more in the long term."
CEO of the Free From Food Awards Cressida Langlands agrees food costs remain stubbornly high but stresses part of this is due to rigorous allergen testing and certification which are essential for keeping products safe for people with coeliac disease.
“There’s a perception that companies simply use ‘gluten-free’ labels for profit, but in reality, confirming a product is genuinely safe involves expensive testing and controls” she said.
Langlands argues to address the price gap, the government should consider subsidising upfront allergen testing, especially for smaller manufacturers. She added: “Grant schemes to help cover testing costs would make it easier for companies to produce safe, affordable options and that cost saving could be passed along to the consumer."
The Social Cost of Safe Eating
For many battling coeliac disease, eating out can feel like a minefield. A social gathering can often turn isolating, a hidden social cost which can transform the disease from a private diagnosis into a disruption of the rhythms of an ordinary social life.
23-year-old Londoner Honor Dimond, diagnosed in childhood, summarised her frustration: “I’ve always had to plan ahead; calling ahead to restaurants, bringing my own food to parties or just going without if nothing was safe.”
While options have improved during her lifetime, with a handful of chains like Nando’s and Wagamama offering reliable gluten-free dishes, spontaneous plans remain rare. She explained: “I can’t just walk into a café and expect to find something I can eat or trust that staff really understand cross-contamination”.
Her caution is echoed across the country: almost 70% of coeliac patients said they were exposed to gluten when eating out in the last month at the time the survey was conducted, with 92% of respondents worrying about being accidentally 'glutened' at each restaurant visit.
The consequences of such oversights can be devastating as shown when 80-year-old Hazel Pearson died in 2021 after being served Weetabix, despite clear warnings in her medical notes that she suffered from coeliac disease. An inquest later found neglect contributed to her death.
Wrexham Maelor Hospital, Wrexham, Wales where patient Hazel Pearson tragically died after staff overlooked her gluten-free diatery reuirements and fed her Weetabix. Image credit: Google Maps
Wrexham Maelor Hospital, Wrexham, Wales where patient Hazel Pearson tragically died after staff overlooked her gluten-free diatery reuirements and fed her Weetabix. Image credit: Google Maps
The misconception that 'a little gluten won’t hurt' persists. As Langlands from the Free From Food Awards said:“It’s not anaphylaxis, so people downplay it when in reality, ingesting gluten can lay someone out for days. A social meal should not mean risking your health but for many, it still does.”
Credit: Dunya Simoes
The upshot is Dimond and others like her often miss out on the easy camaraderie that revolves around shared meals and food-led gatherings.
As Dimond said: “I have to plan every bite. Sometimes I miss out. Food is how people bond. If you always have to be the one asking, explaining or eating differently then it feels like there’s a subtle isolation.”
She added: "Honestly, I’m tired of gluten-free brownies. It’s always brownies! I wish more places would offer just one more safe, interesting option - it would make the world feel more welcoming."
The token gluten-free brownie, as if there couldn’t possibly be more to life for coeliacs with a sweet tooth...
Fortunately, some bakers are refusing to accept this status quo.
Enter Libby’s London bakery, a triple award-winning gluten-free patisserie. In the following video, meet the founder Simon Wolanski whose creative range has led customers to say that he has changed their lives.
With branches in Notting Hill, Primrose Hill and Vauxhall, Libby's bakery is a staple within London's coeliac community. Crafted by Masterchef winner Keri Moss, their pastries have won them three golds at the Free From Food awards.
Maisie Clinton, 21, shares how turning to Instagram as @glutenfree_maisie helped her cope with the isolation of a coeliac diagnosis
Finding Community Online
The emergence of bakeries offering a full spectrum of gluten-free goods hints at what is possible when coeliacs have more visibility. But outside of dedicated shops, practical support is increasingly found online. Smith found Reddit and TikTok to be the valuable resources she wasn’t offered during her long diagnosis process, for instance.
There is certainly a growing community of coeliac content creators who use their lived experience to offer hacks, recipes, and restaurant reviews as they navigate their day-to-days. Their platforms provide connection and up-to-date information that many find lacking from traditional sources.
Maisie Clinton (@glutenfree_maisie) is one such voice. Listen to the soundbite to learn the inspiration behind her Instagram account.
Audio transcript:
Hi. My name is Maisie. I'm 21 years old, and I'm from Kent, and on Instagram I'm @glutenfree_maisie.
So, my diagnosis started with a blood test that said I was anaemic. Not long after, I had another blood test which came back positive for coeliac disease, as well as positive for other deficiencies, including vitamin D, which then led to my osteoporosis diagnosis as well.
I think what made me want to document my coeliac, gluten free journey online was sort of the fact that it's quite an isolating diagnosis. Food and eating is such a social part of life, and all of a sudden it became very difficult to do that and find places I could eat. And it was that sort of like, "Oh my god, I'm on my own."
And then, obviously, making this account, I'm very much not on my own and it is lovely. I do really hope my @glutenfree_maisie account has helped others. I do get a lot of nice messages and comments, and it just, it makes me so glad.
To be honest, I just love it, but it's also really helped me making this account. I feel a lot more confident in being coeliac.
Despite the frustrations a thread of optimism evidently runs through the coeliac community. All the interviewees highlighted while the path hasn't been easy, there have certainly been steady improvements.
Langlands sees an industry which is moving towards safer, inclusive (and hopefully more affordable) food options, with an increase in gluten-free entries at the Free From Food awards each year. Meanwhile, Smith emphasised how practical connections can help bridge the gap left by formal healthcare systems.
She said: “Without these online resources, I wouldn’t have known the small things that make a big difference. I’ve had to advocate for myself every step, but sharing information has been a lifeline.”
For Smith, Dimond and many others, it’s this sense of shared experience and mutual support that offers a way forward - proving that while the system may fall short, the coeliac community and its allies continue to promote a sense of normality.
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