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Celiac disease and the 5 stages of food grief
“Tell me what you eat, and I will tell you who you are”
Jean Anthelme Brillat-Savarin
One morning, when I was 20 years old, I got a phone call from my family doctor. I’d been feeling under the weather for a few weeks and I’d gone in for a blood test. “Looking at the results, it can’t really be anything other than celiac disease.”
Fortunately, or unfortunately, the treatment for celiac disease is simple: just don’t eat gluten. That’s a lot easier said than done, because gluten is everywhere : soy sauce, commercial vinaigrettes, condiments and seasoning, cereal, candy, beer, and pretty much every baked good out there. If it’s heavily processed, there’s about an 80% chance you can’t eat it anymore, and that realization alone can hit you like a ton of bricks.
I know now that I got really lucky - many people who suffer from celiac disease will experience a variety of unpleasant symptoms and often be in a great deal of pain, get bounced from doctor to doctor for years, receiving diagnoses ranging from IBS to Crohn’s disease.
I didn’t go through any of that, but being diagnosed with celiac disease was just like grieving, and I got knocked around at every stage. The journey to acceptance has been a difficult one. This is a personal account of how it felt for me - I’m only hoping that if you’re going through this, or if you know someone who is, reading this can help.
When I was diagnosed, my first instinct was to flat-out refuse to see how serious of an issue this was. When you know that the reaction to eating gluten isn’t life-threatening like peanut or shellfish allergies, it can be tempting to minimize and from there, it’s only a few more steps to cheating. What’s a night of feeling uncomfortable compared to a few minutes of intense tasting pleasure, right?
I cheated in my first week of being diagnosed, because it was just too much to handle all at once. We all want to belong - that’s a basic human feeling. Nobody likes to stick out or make a fuss, and just the idea of being different for the rest of your life can be enough to make you cheat.
But ultimately, the direct and indirect consequences of eating gluten just isn’t worth it: undiagnosed or untreated celiac disease has been linked to depression, anxiety, ADHD, anemia, vitamin and mineral deficiencies, joint pain and arthritis... Sticking to a strict gluten-free diet is no picnic, but it definitely beats being in pain for the rest of your life.
Finding your way around a new diet is one thing, but the gluten-free diet is especially inconvenient, expensive and time-consuming. You’ll have to clean out most of your pantry, say goodbye to freedom and adventure, and become nothing short of a planning expert overnight.
It’s not just the taste you’ll miss - it’s the abundance, the convenience, the ease. Everything has suddenly become so complicated overnight. You have to think of every little thing, just in case - and of course sometimes you won’t have the foresight. You’ll forget something, or not think through a situation, and you’re going to get angry, so angry that this is happening to you. That’s normal. You didn’t ask for any of this, and now you’re stuck with that for the rest of your life. It’s not fair.
Eventually, you’ll get used to packing your own lunch, and carrying snacks with you everywhere you go just in case you get hangry, because there probably won’t be a gluten-free option wherever it is you’re going. It’s always going to suck, but like a lot of things in life, it’ll get better over time.
Gluten-filled foods were so central to my diet that at first, I fell right into the “rebound food” rabbit hole. I bought loaf after loaf of gluten-free bread, and box after box of gluten-free cookies and crackers. The sense of comfort you get from that is so important, but at the risk of raining on your parade, there’s something I have to point out: it’s really not that healthy.
Think about it: in order to mimic the behavior, texture and taste of wheat, the manufacturer of your favourite gluten-free cookie has had to use between 5 and 10 ingredients, including starches and refined flours with very little nutritional values like white rice and corn, or salt, fat and sugar. Sure, there are brown rice and quinoa-based alternatives that are not overly processed or unhealthy, but they are few and far between. A lot of the time, the onus is put on taste and texture, not nutrition.
But going through that phase is completely normal. I still do it. I still buy gluten-free processed food and keep it in my pantry (which looks like it’s stocked for the apocalypse, by the way) just because the fear of scarcity is ever-present. That will probably be the case for the rest of my life… or at least until I learn to live without gluten-free bagel chips. Perhaps.
Let’s not kid ourselves: celiac disease is a burden. It’s awkward, alienating and complicated. Your social life takes a big hit, and the holes in your pantry turn into holes on your table, and holes in your life. Out of all the stages of grief, I spent the longest time right there.
For a lot of people, food is at the center of life. It’s a connection to our family, our roots, our culture. The way we spend time together, bond and share is built around it. There’s so much of our history and our identity in the things we eat, so much nonverbal communication built around food, that it’s hard to see it upended. It’s even harder to have to pick up the pieces and start over again.
The simple act of eating out can become so exhausting that you might ask yourself if you’ll ever do it again. Most of the time, you’ll have to call the restaurant ahead of time to find out how safe their kitchen is for you and if they’re capable of providing you with gluten-free options. If you’re eating at a friend’s place, you’re probably going to have to go over the entire menu with them, ingredient by ingredient. Depending on how sensitive you are, none of those things might help at all due to the risk of cross-contamination. One single thing going wrong in the entire chain of food preparation could mean a ruined night not just for you, but also for everyone you’re with, and that’s a lot to carry.
I was pulled out of that stage by friends and family who were right there with me every step of the way, who learned along with me, and never let it beat them down. And let me tell you this: nothing says love more than a home-cooked meal you know inside and out because someone’s gone through the trouble of checking everything with you twice.
You know what has actually helped me come to terms with celiac disease the most? Food! Well, also the realization that wine is gluten free… but mostly, food! Learning how to fend for yourself and thrive in the face of adversity is incredibly empowering.
Here’s what did it: I realized that the list of things I can have is not only much, much longer than the list of things I can’t, but also that it’s incredibly diverse, delicious and fun. I started cooking with alternative grains like amaranth, millet, buckwheat, I’ve discovered that you can make a salad into a complete meal, and make a hundred kinds of soups that are just as filling and delicious as a bowl of pasta. Having to cope with so many holes in my pantry and on my table has pushed me to be all the more creative and adventurous to fill them.
Avoiding overly processed food that “may contain gluten” has also forced me to cook from scratch, and now my freezer is always stocked with delicious homemade stock, pasta sauces and muffins. I no longer rely on someone else’s expertise to feed myself. Incidentally, the way I eat has also changed for the better: I’ve traded industrial ingredients for whole foods like raw nuts, fruit, vegetables and legumes.
Over time, my relationship to food has completely changed and shifted. I have a newfound respect for my body, and care so much more about the food I eat. I know firsthand that food has the power to make me feel extremely sick, but I also know that it has the power to make me feel really good, and that’s a real eye-opener.
Eight years later, I’ve gone through every stage of grief. I’ve learned to live with this thing, and in the process, I’ve become stronger and more self-reliant. I’ve opened myself to a whole new world of flavours and I’ve become a better cook than I ever would have if I’d been able to subsist on prepared meals and takeout. Instead of standing still, I’ve been pushed outside my comfort zone and forced to grow, and in a way, I’m grateful for that. Until they cure celiac disease or come up with a magic pill, that’s good enough for me.
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