There’s nothing like the smell of freshly baked bread taken straight from the mouth of a hot oven. Or the taste of a filthy-good, icing-covered cinnamon bun, paired with a creamy, oat milk latte. Unfortunately, these two sentences do not resonate with me. Why, you may ask? Is she insane? Truthfully, I think I’d rather be insane than live with this horrific disease. Yes, disease. A disease not only of the body, but of the mind too. You guessed it – or probably didn’t – I’ve been cursed with the treacherous coeliac disease.
For those of you unaware of coeliac disease and its troubles – I envy you. But let me offer you a quick crash course. By definition, coeliac disease is an autoimmune disease, which is a fancy way of saying the body reacts to gluten in a similar way it would to foreign pathogens like COVID, for example. But in a coeliac’s case, the body mistakenly attacks the small intestine, damaging the gut, which can take ages to heal (not very mindful, is it?) So no, it’s not the same as the upset stomach you get while hungover on a Sunday eating a leftover spice-bag. It is also not comparable to the trendy diet choices your favourite influencers make. Of course, some people do have intolerances or sensitives whereby they can’t eat gluten, but being coeliac means strictly avoiding gluten like your life depends on it (because technically it does). And gluten is in everything – not just bread. Think pasta, cereal, cookies, or soy sauce, sausages and beer. Even oats are off limits. In summary, anything that has wheat, barley or rye in it (so, pretty much everything tasty), is poisonous to coeliacs. It doesn’t end there – there’s also this sneaky thing called cross-contamination; when a coeliac eats something that has even slightly touched a food or utensil which has been in contact with gluten, there is still a high risk of triggering an autoimmune response. And before you ask – no, it is not an allergy, and no, there is no cure. A coeliac disease diagnosis is a lifelong sentence. It truly is a curse.
I was fourteen when I was hexed, meaning that up until then, my life was free from the shackles which I am forevermore constrained by. I truly believe it was worse than being diagnosed as a young infant; how can I ever move on knowing how delectable a deep-fried donut is? Knowing that I will never experience anything even remotely similar to it again? Bad karma – it’s the only valid conclusion I can come to. I must’ve done Gluten horribly wrong in a past life. Although admittedly, I did feel much better when I finally ended my toxic relationship with gluten and said, ‘I told you so!’ to my granny, who had always insisted my stomach pains were simply caused by nerves. And after years of googling, ‘how to be gluten-free’, and a ridiculous stack of hefty medical bills later, I can confidently say that at this stage, I know more about my gut than I do about my psychology degree. Alas, learning how to maintain good health with my mega-damaged, immunity-responsible intestines hasn’t been easy.
Living gluten-free requires a level of emotional, and financial, stability. Feeling safe around food? Rare. Overwhelmed by food anxiety? Always. Experiencing happiness in this lifetime? Questionable. My brain works overtime assessing every single item I might choose to digest, and my pockets scream when those choices are made. Don’t even get me started on gluten-free bread – how I love paying six euro for that nasty taste of nothing, or ‘cardboard’, as non-coeliacs have helpfully described it (cheers guys). And my patience is thin when it comes to other people’s opinions on my dire situation. ‘No, it’s not a health choice, Susanne, it’s an autoimmune disease – i.e., my body is literally attacking itself and I may well never fully recover.’ Or, ‘Yes, I know it’s not as urgent or deadly as a peanut allergy, Brian, but there are only so many more particles of gluten my body can take before I become malnourished, or even develop osteoporosis.’ Gluten may be your friend, but it is certainly not mine.
There are also some things in a gluten-less life that never get old: the sheer embarrassment of telling your date that you are severely ‘allergic’ to the pizza they serve at his favourite eatery; and the look of disappointment on his face when he realises it wasn’t just a bad joke. Not to mention the imminent danger of eating out – who knew restaurants could be such a scary place? A rodent infestation would be safer than an order mix-up. Oh, and the pure terror of someone thoughtfully baking gluten-free brownies as a surprise (but what if they’ve used a gluten-touched spoon?) There’s also the impending doom when you actually, accidentally I hope, ingest a teeny, tiny, smaller than crumb, crumb of gluten. And, of course, the lengthy trip to the bathroom that follows (need I say more). I suppose you might conclude that us coeliacs are just inherently incapable of having nice things.
Okay, maybe a coeliac life isn’t all full of evil. We do sometimes experience brief moments of joy where we almost – emphasis on almost – forget how lonely a gluten-centred world can be. That is until someone says, ‘at least you can still eat the salad though!’ (Yeah…thank God for that). But we do get blessed by the rare culinary heroes who have dedicated their lives to catering us lost souls with non-gluten containing masterpieces. And nothing can beat the pure sense of euphoria when the mildly-attractive café manager tells you that they will change their gloves before preparing your meal (weird way to ask me out, but okay I guess?) One thing us coeliacs can be really grateful for is our mutual understanding: the special connection – or trauma-bond – that brings us all together. Once we hear, ‘I can’t eat gluten’, our default response is to foster a warm, welcoming, wheat-free environment, where all worries about being a ‘picky eater’ can be discarded.
Now, I’ll leave you with some food for thought: maybe next time you grab your morning pastry or freshly baked bread, you could be grateful that the simple things you get to enjoy in life aren’t trying to poison you. Or maybe my fellow coeliacs can feel somewhat validated – we don’t get much representation, do we? I do hope that you readers have learned something valuable today, but if you do not hear from me again, you should suspect a case of flour play (it sounded better in my head) – death by gluten, perhaps.
