The emotional impact of Coeliac Disease: A personal journey for Coeliac Awareness Month

A personal post by Meg Moss, our Head of Public Affairs and Advocacy

I was diagnosed with Coeliac Disease at the tender age of three, back when eating ‘gluten-free’ was an almost-completely-unheard-of medical directive, rather than a healthy-eating lifestyle choice, which meant Mum had to bake everything from scratch and explain to bewildered (and non-compliant!) relatives why little Meg couldn't have ‘just one ginger biscuit’ without potentially ending up in hospital. We’ve come a long way since then, most of the time, but sometimes it feels like it’s not far enough and there’s still a huge lack of understanding about what gluten-free really means for some people and the significant emotional toll it can have, which is why I wanted to write this article.

For those who don’t know, Coeliac Disease isn't an allergy or an intolerance (although people may describe it as such as a helpful shorthand) - it's an autoimmune condition where ingesting gluten causes your body to effectively declare war on itself, attacking the lining of your small intestine, as well as potentially other areas of your body, such as your hair follicles, your skin, your liver, or your nervous system. It's not pretty, it's not fun, and it's certainly not something you'd choose.

What Actually Happens When I'm ‘Glutened’

When I ingest gluten - even a microscopic amount that might have touched something that touched something else that once looked at a breadcrumb from across the room - my body reacts in varying degrees depending on the amount, but the immediate effects include, but are (sadly) not limited to:

• Stomach pain that feels like someone is simultaneously punching me from the inside while also trying to tie my intestines into elaborate knots
• Body chills, that have made me feel almost hypothermic on a hot summer’s day (thanks to what I described at the time as ‘the nicest gluten free bread I’ve ever eaten!’, but was in fact just normal bread...)
• Nausea (and likely vomiting) that lasts, unrelentingly, for hours
• Exhaustion so profound I could fall asleep standing up
• Brain fog that makes me forget my own name, and occasionally how doors work (this can last, again to varying degrees, for weeks)
• Joint pain that suggests I might actually be 103 years old rather than in my thirties
• The inevitable and deeply unwelcome bathroom-related consequences that I'll spare you the details of

The long-term effects of continued gluten exposure are even more delightful, including increased risk of osteoporosis, infertility, neurological problems, other autoimmune conditions (because apparently one isn't enough), cardiovascular disease, and certain types of cancer. And let's not forget the potential for malnutrition leading to hair loss, dental problems, poor vision, and generally feeling like a walking disaster approximately 97% of the time…

These were some of my symptoms, but actually the physical and neurological symptoms of Coeliac Disease are wide-ranging and cover way more than my list, both in terms of type and severity.

Childhood & Coeliac Disease

Being a child with Coeliac Disease in the 90s was… character-building? While other kids were enjoying soft and fluffy jam sandwiches and stuffing their faces with party food (I’ve never had a party ring or an iced gem!), I was that child in the corner with my food from home, trying desperately not to draw attention to the fact that my ‘bread’ looked like it had been constructed from sawdust and disappointment, and tasted of cardboard. Missing out on birthday cake was always the saddest part for me, personally.

The thing about kids, and especially teenagers, is that they desperately want to fit in, and nothing says ‘I'm different’ quite like having to wait at the back of the line for your corned beef salad while your friends are already halfway through their turkey dinosaurs and smiley faces, eyeing up their semolina or pink sponge with custard. So what did I do? What any sensible kid would do - I occasionally threw caution to the wind, consequences be damned.

It was my way of surviving the brutal ecosystem of secondary school social hierarchies. Being ‘the weird kid with food issues’ wasn't exactly high on my list of desired identities, falling somewhere between ‘person who reminds the teacher about homework’ and ‘child who voluntarily plays the recorder during lunch break’. It was the trumpet, and I have no regrets.

Looking back now, though, I realise how dangerous this was. Cross-contamination wasn't even really part of the conversation back then. My parents and doctors focused on obvious gluten-containing foods, but the subtleties of shared toasters, double-dipping in butter, and the perils of restaurant kitchens weren't yet on our radar. I got away with it sometimes, and other times I paid dearly, suffering in silence rather than admitting I'd deliberately glutened myself just to feel normal for an afternoon. I remember sitting on the sofa with my then-boyfriend after his Dad had given me a flapjack because “oats don’t have gluten in them”*, feeling the oncoming onslaught and having to call my Mum to come and pick me up because I didn’t think I’d be able to get the train home. The same at a friend’s house, after a sleepover and sitting down for breakfast, I succumbed to the oats argument a second time (porridge, this time) and paid dearly for my mistake. Both of these times, I was in my middle teenage years, and very self-conscious about having Coeliac.

For counsellors & psychotherapists working with children and young people who have Coeliac Disease, this element cannot be overstated: the emotional weight of being different during developmental stages can lead to risky behaviour that has genuine health consequences. The desire to fit in can literally override your instinct for self-preservation. Throw in some teenage rebellion, and you've got a recipe for medical non-compliance that comes with serious long-term health implications, which I have learned the hard way.

*Oats don’t naturally have gluten in them, but they’re generally milled and processed alongside gluten-containing grains like wheat and rye, which certainly do, and so you’re never actually getting just oats. You can now buy ‘gluten free oats’, which are milled and processed separately, and are fine for me to eat. It’s also important to note that oats do have a similar protein called avenin, which some Coeliacs can’t eat. In other countries, such as Australia, oats aren’t considered safe for Coeliacs as determined by their food safety standards, but they are in the UK.

The Restaurant Inquisition

Fast forward to adulthood, where I now have the vocabulary and self-advocacy skills to manage my Coeliac, yet I do still find myself getting flushed, and my heart pounding, every time I need to eat away from home. It hasn’t been helped by some painful interactions over the years – many of them go something like this: I'm standing at the counter of a café that proudly advertises ‘gluten-free options’ (hmmm), summoning the courage to begin what I like to call ‘The Restaurant Inquisition’. Nobody expects this.

‘Do you have gluten-free options?’ I ask, knowing full well this is just the appetiser to a multi-course meal of increasingly specific questions.

‘We do…’ they reply, sometimes with enthusiasm or sometimes begrudgingly.

‘Great,’ I continue, taking a deep breath. ‘But I have Coeliac Disease, so I need to ask about your cross-contamination procedures. Do you use separate utensils? Is there a separate preparation area? Do you change gloves? Is there a separate toaster? Do you use the same fryer for battered items and chips?’

And this is where one of two things happens:

1. Their eyes glaze over, they call for the manager, and a hushed conversation ensues, followed by either, ‘no, we can’t accommodate you, it’s a small kitchen’, or – miraculously, sometimes – ‘yes no problem, we can do X and X to make sure it’s all safe’.
2. They confidently assure me ‘Oh yes, it's all totally safe!’ with the kind of certainty that suggests they have absolutely no idea what cross-contamination even means.

There was one particularly memorable occasion when I asked these questions one lunchtime; I’d just been to the library with the kids, and they were hangry so I thought I’d go to the café over the road. The café owner - who had, I should point out, advertised gluten-free options - proceeded to very nearly shout at me that I should have booked in advance if I expected them to clean down their kitchen for me. My face burned with the heat of a thousand embarrassed suns, and I genuinely cried (my resilience well was all dried up after a morning of negotiating buses and "no, you can’t check out that manga horror book, you’re three, it’s for grown ups"). I mumbled an apology, and just ordered something for the kids and not myself, wishing I’d thought of something smart to say or had the wherewithal to stand up for myself a bit more.

That experience absolutely left a mark, on top of all the other times that had happened to lesser degrees. It reinforced the narrative that my medical needs were an inconvenience, that I was a burden, that my desire to eat without becoming ill was somehow unreasonable. It's been years, and I still feel a knot of anxiety every time I need to ask those questions.

More Than Just Missing Out on Cake

For counsellors & psychotherapists reading this, the psychological impact of Coeliac Disease shouldn’t be underestimated. It infiltrates nearly every social situation, creates complex emotional responses, and can fundamentally alter how a person views themselves in relation to others.

The guilt is perhaps the most pervasive emotion. Guilt for ‘inconveniencing’ others: for requiring special accommodations; for making restaurant outings complicated; for turning down homemade food lovingly prepared by friends who forgot about the whole gluten thing, or where they’ve used the serving spoon in the cous cous and then put it back in the sauce. I've apologised more times for my autoimmune disease than I have for actual mistakes I've made, which says something rather unfortunate about how I've internalised society's messaging around dietary requirements.

Then there's the constant low-level anxiety that accompanies eating anything I haven't prepared myself. Even in establishments that take all the right precautions (shout out to Coeliac UK Accredited venues!), I find myself hyperaware of every twinge in my stomach for days afterward (unless it’s a dedicated gluten-free café, which is a next-level dining experience for me), wondering if that slight discomfort is the beginning of a glutening or just normal human digestion. It happens with pre-packaged food, as well: I had a whole night of worry over Tesco’s own-brand Frazzles, which were totally fine – just a bit of indigestion – but had me panicking until I was sure I was safe. It's exhausting to be so vigilant, to never fully relax around food in a world where breaking bread together is one of our most fundamental social rituals.

The grief is real too - grief for spontaneity, for cuisines I’ll never be able to try, for the simplicity of just grabbing something to eat without it becoming a whole production. I'll never know what a pretzel tastes like. I'll never experience proper Japanese ramen. I'll never casually pick up a croissant from that little Parisian bakery while on holiday (in fact I’ve had so much trouble eating in France I’ve decided never to go back, which feels like a huge waste of my French A Level). These aren't life-shattering losses individually, sure, and I suppose I’m conscious that things could be much worse, but it can still feel heavy.

My Safe Haven

My home is my sanctuary - the one place in the world where I can eat without interrogating my food or worrying about cross-contamination. This is only possible because my entire household has agreed to not eating gluten in the house. Our kitchen is entirely gluten-free; you’ll find no regular bread, pasta, and flour here.

This decision wasn't made lightly, and I'm acutely aware of what I'm asking my family to sacrifice. My husband can, and would, eat a whole loaf of bread in one sitting given the chance! They can, of course, eat whatever they want outside the house, but home meals are always safe for me. The alternative would be maintaining two separate kitchens, two sets of cookware, a decontamination protocol that would make hazmat teams look casual, and still living with the constant anxiety of microscopic breadcrumbs migrating where they shouldn't.

The practical reality of a shared kitchen is that cross-contamination is virtually inevitable. A crumb in the butter, flour dust in the air that settles on surfaces, using the same colander for regular and gluten-free pasta - these seemingly minor oversights could (and have previously) made me both acutely and chronically unwell. My family understands this and has adapted with a humbling amount of grace, but I still feel the weight of it. Adorably, my daughters will always ask ‘if I have any allergies’ when I’m ordering from their café, and it feels good to be raising two kids that are conscious about food safety. Thankfully, imaginary-land is always gluten-free, so I fill my boots with doughnuts and pastries there.

When we do a ‘bring your own dish’ party with friends, there's often an awkward conversation about our gluten-free household rules (or at least the first time). When the kids want to have friends over for pizza night, we're the house that serves gluten-free pizza to everyone (I have a great recipe if anyone wants it). When family come over for a roast, everyone has gluten-free stuffing and yorkies. These are the small ripples that spread outward from my condition, touching everyone connected to me. I’m lucky to have family and friends that are so generous and gracious, but I know that not everyone has the same experience.

Online support communities are awash with people, often young people still living with their parents, who are struggling to live in a shared household where not everyone is happy to keep gluten out of the house. There are health implications, of course, but what really seems to be hardest is constantly negotiating and advocating for yourself in the one space where you should feel comfortable, safe, and relaxed. Within those relationships where you’d hope that people would have your back, and put themselves out a bit for you. I see how upsetting it is for people, and can only imagine the impact that will have on their own internal narratives throughout the course of their life.

When ‘Breaking Bread’ Isn't Just a Metaphor

Food is central to human connection in ways we rarely acknowledge until that connection is complicated. Business lunches, first dates, family celebrations, religious ceremonies, cultural traditions - food is the common denominator that brings people together, and gluten is surprisingly omnipresent in these settings.

The social impact of Coeliac Disease is perhaps most acutely felt when travelling. What should be an exciting exploration of new places becomes a logistical nightmare. I research restaurants weeks in advance, pack emergency food supplies like a doomsday prepper, and have learned to say “I have Coeliac Disease”, or “does this contain gluten?” in multiple languages with varying degrees of success. Trying to explain what gluten is in a language with which you’re unfamiliar is tricky (the awkwardness of communicating in broken Bulgarian plus also having to have the gluten conversation can be almost too much), although thank goodness for the modern internet and its translation tools.

I can think of numerous occasions when I've sat with just a drink while my family eats, having found nothing safe on the menu. I insist they enjoy their meal – “Please, don't mind me, I'll grab something from the supermarket later” - while my stomach growls audibly.

The worst part is the exclusion from the communal experience, rather than the hunger though. It's watching everyone share dishes, taste each other's food, exclaim over flavours I'll never know. It's the well-meaning but painful offers – “Just try a little bit, surely a taste won't hurt?” - that force me to choose between education mode (“Actually, even a crumb can damage my intestinal villi...”) and simply declining for the hundredth time, reinforcing my position as the outsider. Sometimes I will ask if I can smell something, which sounds weird but it does actually help.

For the Newly Diagnosed

If you're a counsellor working with someone newly diagnosed with Coeliac Disease, understand that they're likely experiencing a complex grief reaction that might seem disproportionate to outsiders. After all, ‘it's just food’, right? Except no. It's birthday celebrations and family traditions. It's convenience and spontaneity. It's cultural exploration and simple pleasures. It's the ability to eat without fear, anxiety, or exhaustive research.

The newly diagnosed person might be simultaneously relieved to have an explanation for their symptoms and devastated by the permanence of the solution. They might swing between determined optimism (“I can totally do this!”) and overwhelming despair (“This is forever?”). They might be angry that it took years of debilitating symptoms to get a diagnosis, or that their previous attempts to raise their concerns with their GP were dismissed as anxiety or stress.

You’re reconciling with a new identity as a person with a chronic condition, renegotiating social relationships through the lens of their needs, and developing a new relationship with food that might previously have been uncomplicated or even joyful, all while trying to figure out your new diet.

What Counsellors & psychotherapists Really Need to Understand

If you're a counsellor working with someone who has Coeliac Disease, here are the things they might not tell you, but probably need you to understand:

1. The mental load is exhausting. Constantly reading labels, researching restaurants, explaining to others, advocating for yourself, and being vigilant about every morsel that passes your lips requires cognitive and emotional energy that others get to spend elsewhere.
2. The social cost is high. Saying no to spontaneous invitations, being perceived as ‘difficult’ or ‘high maintenance’, and navigating other people's reactions to your needs can lead to social withdrawal or acceptance of risks to avoid conflict.
3. The emotional labour is significant. Managing others' feelings about your condition - their guilt about eating in front of you, their anxiety about cooking for you, their frustration when plans change to accommodate you, or when you can’t find somewhere to eat so you have to either go home or keep looking when everyone is really hungry - can feel hard for a lot of people.
4. The identity shift is profound. Many people with Coeliac Disease describe a ‘before and after’ sense of self, particularly if diagnosed in adulthood. Coming to terms with new limitations and a different relationship with food is genuinely life-altering.
5. The losses are cumulative. Each individual accommodation might seem small, but they add up to a substantial impact on quality of life, spontaneity, and sense of belonging.
6. The anxiety is rational. Fear of contamination is a reasonable response to a genuine health threat. Validation of this reality is so important, as it’s something that can often be dismissed.
7. The burden of education is constant. Every new restaurant, social situation, or relationship requires explaining the condition all over again, often in the face of misconceptions or scepticism.
8. The grief doesn't follow a linear path. Even years after diagnosis, there can be unexpected moments of loss or frustration that trigger renewed grief responses. I was diagnosed when I was three, but I’m still feeling it at 37. As life changes around me, I find a new place that the disease touches, and new reasons that I might be sad about it.

For children and young people, these challenges are compounded by developmental needs for belonging, limited autonomy over food choices, and the intense social pressures of growing up. A teenager who ‘cheats’ on their gluten-free diet is making a complicated cost-benefit analysis where social acceptance may temporarily outweigh physical wellbeing.

Silver Linings

Living with Coeliac Disease isn't all doom, gloom, and wistful staring through bakery windows (though there is a fair amount of that). There are, dare I say it, some silver linings:

• I'm really conscious of other people’s dietary needs, which makes me a good friend to have if you can’t, for example, have dairy, eat peanuts, or don’t eat meat.
• I have a legitimate medical reason to decline foods. ‘Sorryyyyyy, I can't eat your mysteriously grey casserole – it’s the gluten, you know!’
• I've developed resilience, self-advocacy skills, and patience that serve me well in other areas of life.
• I've found a community of others with similar experiences who understand implicitly what I'm going through, share resources and recommendations, and validate feelings that might seem extreme to those without dietary restrictions.
• I just can’t (easily*) eat a lot of the foods that are often considered problematic in dietary terms – no doughnuts, no pastries, vanishingly few take aways, which means I tend to eat slightly more nutritious foods than I probably would otherwise

*I will say that there are some people out there making gluten free doughnuts etc, but I can’t just pick them up from the shops.

It's Not Just About the Bread

If there's one thing I hope counsellors & psychotherapists take away from this rambling exploration of life with Coeliac Disease, it's this: when someone brings their Coeliac Diagnosis, or other food-related limitations, to therapy, they’re not just talking about being sad they can’t eat that food anymore. They're talking about belonging, identity, burden, loss, anxiety, and the hundred invisible ways their condition shapes their experience of the world. About how it feels to navigate a world that wasn't designed for your needs, to constantly explain your existence, and to find joy and connection despite barriers that others don't see or understand. We eat, generally, three meals a day, which is three opportunities every day for things to jar, and emotions to surface. It can take a lot of resilience to get through that, and we’re hoping to explore that with you.

This blog post is written from personal experience for Coeliac UK's Coeliac Awareness Month. If you're experiencing symptoms or suspect you might have Coeliac Disease, please talk to your GP to arrange a proper diagnosis and advice.