What it’s REALLY like having coeliac disease

I know this list isn’t comprehensive, and not all of these will apply to everyone, but I wanted to share an (attempted) humorous look at what my day to day life is actually like, away from the “textbook” symptoms of coeliac. In this wheat saturated world we live in, it really requires constant effort and thought to maintain a gluten-free diet, which is still the only way to manage this disease.

Photo: “Sun sprout salad” by elanaspantry is licensed under CC BY-NC-ND 2.0

Every time you plan to leave the house for more than 4 hours, you have to sit and work out what your next meal is going to be or where you are going to eat.

If you are travelling, you soon get used to bringing way more food than necessary on your journeys. You have to check ahead at the airport, with the airline, with the hotel and with train stations, depending on how long your journey is. Sometimes you’ll want to bring an entire bag of gluten-free food with you (if you’re self-catering), but the airline tells you you have to get a doctor’s note for this, which costs money.

You come to appreciate a new size for your food – “coeliac sized”. Almost all pre-packaged food comes in this size, which means you have lost all concept of what a normal portion should look like, and make up for it by eating two of everything.

Every time there’s an article about the gluten-free diet, there are a stream of comments dismissing it as a fad.

When challenged, these people say, “oh, I wasn’t talking about YOU, YOU’RE allowed to eat gluten-free, I was talking about those attention-seeking FAKERS”. Why thank you, but “those fakers” are the ones responsible for gluten-free food becoming more widely available and of much better quality. Also, stop policing people’s diets, asshats.

When dining at your friend or acquaintance’s house, they tell you they threw the packet to the stock they used away and can’t remember if it contained gluten.

You spend 15 minutes googling the brand of stock to check it’s ok to eat.

Sometimes a host will tell you they are “not sure” about the chocolate, 5 seconds after you’ve put the dessert in your mouth where it is rapidly melting. You rush to the kitchen, spit it out, then discover the wrapper says that the chocolate is fine for you to eat.

You have to awkwardly enquire about what the food situation will be at every social situation, no matter how distantly you know the host. Often you will have to bring your own meal in a sad little tupperware box.

People will start talking to you about why you are eating out of a tupperware box.

People will ask you “what happens when you eat gluten?” about 100 zillion times. Sometimes their eyes widen so much that you can’t help but exaggerate details just to freak them out.

Some people will not get that you can’t eat gluten without telling them over, and over, and over again. These are the people who pass the bread basket full of crumbs right over your plate and I hope they die a fiery death.

These people will then offer you cake and go “oh, I totally forgot you can’t eat that!” (despite your disease having dominated the conversation for about 45 minutes) while you plot their fiery demise.

Sometimes all you want to do is get through a social engagement where there is food without having to talk about coeliac disease.

Some people are wondrous, angelic beings and will go the extra mile to ensure that you can eat everything when you come to stay. Thank you.

You will have to tell these lovely people that you can’t eat the muesli they bought because some coeliacs can’t have oats, even gluten-free ones, because of the avenin content, and you are one of them, and… oh fuck it just nod and smile and throw the thing away later.

People will be rude to you, roll their eyes, make patronising comments, accidentally poison you, poison you *on purpose* to test you are not making it up, ask about your bowels, tell you to switch to veganism, or tell you about how their aunt tried the gf diet for 2 weeks and lost weight.

You will constantly worry about developing further autoimmune disorders. Doctors will not share this worry, and dismiss any symptoms that you develop.

You will occasionally come across a gluten-free restaurant that does all the food you really miss. You will eat everything on the menu and make yourself sick with all the food because OMG they have gluten-free doughnuts/pizza/waffles/schnitzel/dumplings/fried chicken/etcetcetc…

Trying to arrange a dinner with your vegan friend becomes a game of “rice or potatoes?”

Your vegan friend moans that all the vegan recipes online are gluten-free as well, and you moan that all the gluten-free recipes are vegan. Neither of you have ever met a mythical gluten-free vegan.

Buffets become a battlefield. Your strategy usually ends up “be the first at the buffet so no cross contamination occurs”. Other people will tell you to wait your turn, or let the kids go first, or try to make you feel bad for asserting your place at the head of the queue.

You start to consider holiday destinations on the basis of how good the gluten-free food scene is in that city/country.

You will eventually attend a catered event where fruit salad is the starter and (the same) fruit salad is the dessert. Sometimes the main course will be chicken with some salad. You work out that the gluten-free menu contains about a third of the calories of the normal menu, and you make up this calorie deficit by finding the largest bag of crisps you can and angrily eating them during the after-dinner entertainment.

You have to think about food and your body every single day, for the rest of your life. You don’t get a break from it.