Finding Out I’m Coeliac Means Longing For The Foods I’ve Lost

When Kirsten Roberston, 27, found out she had coeliac disease six years ago, she decided to indulge in one final gluten-loaded meal. “It was my ‘last supper’,” she says, remembering how her flatmate came back from the supermarket with a bag full of fresh tiger bread (smothered in butter), warm croissants, and chocolate chip cookies. After Robertson ate her favourite gluten-containing foods for a final time, she had an endoscopy (a test involving a tube and camera down the throat to look inside the body) the next day to confirm the diagnosis, and her diet changed forever.

She logically knew she had to stop eating the bready foods she loved best. After all, when you’re coeliac and eat gluten, the immune system attacks the body’s tissues and even accidentally ingesting it can have severe health repercussions to the small intestine, preventing it from absorbing nutrients leading to further health issues.

As of 2024, over 1.5 million women in America have coeliac disease, and in the UK it’s estimated that one in every 100 people are coeliac. For these people, enjoying a dish or snack, then realising you can no longer eat them, not only is practically challenging, but emotionally difficult too. There is a sense of loss to navigate, especially in our foodie culture where food is so deeply ingrained in our socialisation — from post-pub McDonald’s to a birthday meal at Nobu — and sense of self. Food can be a labour of love, a sign of your heritage, and a way to connect with people. 

“Before my diagnosis, I loved to have people together for food,” Robertson, who lives in St Albans, says. “Making homemade pizzas or pancakes was a weekly occurrence in my flat, and a £5 pizza from a cafe nearby had been my staple meal out during four years of university. I was never a picky eater, and I’d try anything. I did a lot of solo travel as a student and never planned where to eat, I’d pick up a baguette in France or a pastry in Germany spontaneously and think nothing of it.”

Today, she adds, “food is more of a practical affair than a spontaneous joy these days. I don’t host anymore as I wouldn’t want people to eat my gluten-free food — the bread falls apart, the pasta doesn’t taste as good, and it’s more expensive to buy in bulk. I do mourn my past love of food and realise how lucky I was to be able to eat anything.”

Caroline Plumer, psychotherapist at CPPC London, says this grief is typical when receiving a coeliac diagnosis during adulthood. “There is the loss of being able to enjoy foods that we once loved, and having to see others continue to enjoy them. There’s the issue of willpower, and feeling that things are deeply unfair. When it comes to any type of loss — even if it’s around food — grief is normal. Losing access to foods you loved, as well possibly losing the chance to share food with others in the same way you used to, will inevitably be painful and require some period of adjustment.

“We all like to be in control of our decisions. Being told we are no longer allowed to consume something strips us of some of that choice, and in the case of coeliac disease may even make us feel like our own body is at odds with us.”

For many, the above is a long journey. Upon regularly feeling nauseous after eating and later becoming anaemic, doctors ran blood tests on Robertson to determine the underlying cause. She says she was at first “naive” and didn’t realise how much food contains gluten. “I knew it was in bread and pasta, but that was it. Gluten, which is wheat, barley and rye, can crop up in all manner of places — in crisps, sauces, soups or chocolate,” she says.

The reality is, it’s affected her love of food and she’s lost the freedom that comes with being able to eat most things, in most places. It's even put her off travelling, as she worries she would struggle at meal times — being coeliac has a knock-on impact across other aspects of her life. One academic paper titled “Controlled by Food” concluded: “The lived experiences of coeliac disease were more varied and profound than expected. It is important to take psychological and social aspects into account in the treatment of patients with coeliac disease”. It’s been almost two decades since that paper came out, and the situation — going by Robertson’s experience — is largely the same.

Robertson, for example, experiences anxiety around food, and will either eat at home or bring snacks with her when friends suggest a pub outing. If there’s a mental image to conjure that sums the stress of it up, it’s this: “Even when I cook at home, I’m always rifling through the bin to triple check packaging to make sure my food is safe.” Signs someone has accidentally eaten gluten might include abdominal pain, bloating, constipation, and diarrhoea. For Robertson, it involves vomiting for more than a day.

Claire Merrifield, GP and medical director at Selph, says that when medical professionals provide support and properly explain what being coeliac means to patients, the risk of developing anxiety around food should be reduced. However, as she puts it, “the health system in the UK is under pressure at the moment, and if the time spent on explanation of this condition is reduced it may lead to feelings of anxiety around food.” Merrifield says it’s vital to ask for support from a doctor if these fears arise. Roberston alleges she didn’t get any advice from GPs on the lifestyle changes she’d need to make overnight — most of what she’s learned has come from Facebook groups. “After the endoscopy it feels like you’re let loose into an unknown world,” she says. 

Beth Tebboth, 27, who lives in Surrey, can relate to feeling lost in this new world. She was diagnosed at 23 years old and has since set up a secondary Instagram account to document some of her meals as she navigates life gluten-free. Sometimes she bakes along with The Great British Bake Off, turning the recipes gluten free. “I used to get a lot of joy from good food, mostly home cooked meals and baked treats. It was always brilliant when someone brought cake into the office. I loved spaghetti bolognese, steak and chips, anything breaded, doughnuts, biscuits and chocolate.”

While diagnosis brought on initial relief in that she finally knew what was “wrong” in her body, she remembers the night before her gastroscopy (a test using a tube and camera to check inside your throat, food pipe and stomach), she decided to eat a doughnut and chocolate for the last time. “As it sunk in, I felt like I was missing out and that made me upset and angry,” she says. “I feel like I’m a lot more aware of food now — I know far more than I’d ever want to. I can also feel ‘othered’ when I’m with friends and I can’t enjoy the same foods as them, or like I’m being awkward when I ask to be accommodated. Gluten-free alternatives are better than they were, but I do think about how much nicer certain things would taste if I could have the ‘real’ versions.”

The mixed emotions around being coeliac can hit often, especially at meal times. “I try to not let the fact that I can’t eat something get to me, but if I’m a bit emotional or having a bad day, then I can get upset and annoyed that I wasn't catered for,” Tebboth adds. “It sometimes feels like people expect me to enjoy every possible gluten-free alternative, but I’m a human with my own tastes so I can get very stressed by trying to ‘save face’ and eat something I really don’t like.”

It’s also far more costly to eat gluten free. In Scotland, Wales and Northern Ireland the NHS offers gluten-free food such as pasta, crackers and bread on prescription to help with the financial burden. In England, the services are limited and area dependent.

As if women haven’t been dealt an unfair hand with their health (and finances) from the get-go, statistics show that 60% to 70% of those with coeliac disease are women. Why? One thought is that auto-immune conditions tend to affect women more than men due to hormonal changes, but the concrete answer still isn’t known. In a report published by Italy’s Ministry of Health, “gluten inequality” was found, as 145,759 of the 206,561 people who have the diagnosis in the country — which is known for its glutenous foods — are women. In the UK, Coeliac UK estimates nearly half a million people have the disease but aren’t diagnosed. 

Recently, Tebboth forgot her bag at home before going to work — which contained her breakfast and lunch for the day. Searching for gluten-free options was difficult: All she could only find was two sandwiches in a train station supermarket. When she isn’t “in charge” of organising meals out, she feels “people don't always understand the anxiety that comes with that and the things I need to take into account before deciding if I can eat somewhere.”

“I think I will always grieve not being able to eat gluten and the freedom that comes with it,” she adds. “I have moments where I crave a KitKat or Walkers crisps and then I feel sad. It is wonderful when I meet fellow coeliacs though, because they understand.”