Not "Gluten-Free By Choice": Here's What It's Like To Live With Celiac Disease

May 13, 2022

Living on the road out of a 90L backpack might seem hard enough for some people, but when people find out I also live with Celiac disease, their jaws always drop. “How do you even survive?” they ask. It’s not as hard as it seems, but it definitely has its challenges and makes it much harder than for anyone else on the road I’ve ever met.

I learned by now not to say that I’m gluten-free, because people would ask me if it’s by choice or for health reasons. I’m not someone who just follows the latest fad diet, though I’m glad it became popular because it means more food options for me in supermarkets and restaurants. But why would any sane person eat gluten-free when they travel from place to place and spend their nights camping under the stars, at times in the wilderness and miss out on almost every camp food, just so they can follow a trendy diet? At the same time, I do choose to live gluten free for health reasons. I choose to not die prematurely or suffer in my teepee for days from crippling belly pain, constipation and neuropathy (tingling in hands and feet) and depression, nausea, exhaustion, or general confusion, just to risk GI cancer and further autoimmune diseases.

Celiac disease is an autoimmune disease, which means my body declares war on itself and attacks my vital organs whenever I eat gluten. And it’s not something that gives me great pride to announce. The severity of allergies varies. So if you’re lucky you only have gluten allergy which can be cured sometimes, but to someone with Celiac, eating “just a little bit” of gluten can actually have some potentially life-threatening risks, like cancer. So naturally you have to be really careful and prepared for everything, anytime.

I know there are more critical conditions. I also live with acute kidney failure, which means my kidneys could stop working anytime if I do not hydrate well, making it even more difficult to travel and hike. I need to pee more frequently while others who drink way less can sleep calmly overnight. I have to climb out of my teepee even in the biggest storm. Even so, I feel really lucky as I do not suffer from an illness or disease that has to be treated with radiation. I do not need dialysis or intravenous solutions and do not need to fill my backpack with bags of pills. But hardly anything will make you as much of a pain in the ass as Celiac disease. Though a good kidney failure can really beat it if you’re talking about pain levels. But there are other things that can turn this into a nightmare: the cumbersome part is not spending hours in the supermarket reading through labels, not asking questions about every ingredient or method of preparation or how much the food-provider truly knows/ or rather cares if you get sick or not. Even if people really care and go out of their ways to prepare safe food for us, it can still happen that it gets cross-contaminated and no one can be blamed. Eat at your own risk.

The relentless struggle is simply enjoying food and life with it and feeling (somewhat) decent without turning me into an anxious, avoidant outcast out of an otherwise normal-seeming person.

The most agonizing aspect of this disease is when you know you are taking insane measures to get well and still feel like shit. When there is no way to predict how you will feel next day—or even how long it will last, you have to pursue joy more aggressively than you avoid the poison. If it means draining five pounds that you absolutely do not have into just one cookie from a gluten-free bakery—just to enjoy something again—you’ll do it. Even if you have to trade a whole day of eating for it.

Life should be not measured on a scale. I shouldn’t obsess over one breadcrumb falling onto my plate or every pound I flush into all this exorbitant food. I shouldn’t be telling you about a sugar cookie as if it’s a fascinating story. I should have been able to go on my hikes and live in a teepee at a campsite without carrying kilograms of my own food for kilometers on my back only because I have no option to buy them anywhere else.

Though pálinka (our Hungarian national alcohol) is also gluten-free, so I could just go for it and forget all my struggles with this. Why I don’t do it?

But I have far too much pride to feel sorry for myself. In fact, it seems as though this is exactly what would happen to me, anyway. Besides, someone who is naturally neurotic and obsessed with healthy living and prone to depression anyways and fairly solitary seems like the perfect subject for this cosmic joke is an illness. And I’m still laughing. I laugh out of the same nasty spite that impels me to love and nourish my broken body until the day that it dies.

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Photo: Neha Deshmukh via Unsplash

Imola is a Hatha and Ashtanga yoga teacher, tree planter and writer and editor of Raised by the Wolf, an online magazine for Wild Women, with a passion for exploring and life outdoors. Originally from Hungary but currently planting trees and rewilding the enchanting forests of France. Hop over to RBTW magazine, and blog and follow her on Instagram @yogiraisedbythewolf


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