A Day In The Life Of A Celiac
If you are gluten free, you undoubtably know what it’s like to truly miss certain foods. We acknowledge these pangs of desire often. (I’ll even admit to sniffing my friend’s beers when we go out for drinks.) But what about all of the other things we say goodbye to when we go gluten free?
Five years ago, I ate whatever I wanted. As far as I was concerned, food allergies meant hive and anaphylactic shock. I had no idea that they could cause things like migraines, depression, and sleep disorders. I was sick all through my teens and early 20’s, and it wasn’t until I received a blood-drawn food allergy test, that I discovered that gluten and dairy were the culprits. I removed them from my diet completely, and within one month my life was completely transformed. (For more on this discovery, please see a former post Going Gluten Free: The Choice That Saved My Life.)
The removal of gluten and dairy from my diet meant that about 95% of my diet had to change. I had to give up nearly everything I had eaten my whole life. Anyone you know who has made this type of change in their life is bound to tell you that they miss certain things like crazy! Fresh bread, real beer, cheese stuffed raviolis…are all things high on my “Miss List”. But there’s something that I miss even more than those things. I miss being able to go out to eat without fearing that I will be inadvertently poisoned.
When I ingest gluten accidentally, it’s bad. Real bad. It’s like I have food poisoning for days and my intestines feel like they are literally rotting from the inside out (not too far off from what’s actually happening). I am not one of those people that “cheat” occasionally on their diets. I can’t simply accept a headache for a couple days in exchange for indulging in a glutenous treat. For me, choosing to eat gluten could mean choosing to end up in the hospital.
This means that when I go out to eat, I have to be very careful. If I, or someone else, makes a mistake, my week is ruined. This makes eating out very stressful. Whether it’s a barbecue in a friend’s backyard or a dinner out at a restaurant you have been to a million times, a Celiac has to be aware of everything that they eat–all the time. I don’t think the average person understands quite how this feels.
When you’re in school, you learn about how ancient Kings used to have food testers to make sure their meals weren’t poisoned. Their servants would try the food first to protect royalty from attack. Celiacs don’t have that privilege. We are our own food testers. How do we find out that our food is unknowingly contaminated with gluten? We eat it and get incredibly sick. Every. Time. You know what it feels like? Being poisoned.
In the 4 years I’ve been gluten free, this has only happened to me a handful of times. But that handful was more than enough to plant some deep rooted anxiety in my brain when it comes to eating. Particularly when eating food that was not directly prepared by me. You may think, “If you struggle with this, why not just prepare all your food yourself?” I do. As much as possible. But sometimes you’re away from your kitchen, working, traveling, or otherwise unable to cook for yourself. This is when things get scary for a Celiac. Short of snacking out of a grocery store where we can depend on ingredient labels, this means we may have to patron a restaurant.
Eating Out at Restaurants
I worked in food service for 10 years. I served tables for many of them, and I can tell you first hand that many servers don’t even know what gluten is (I was one of them once), and many cooks don’t care. One of the most annoying things in the world for our chefs was when I would walk in to the kitchen in the middle of our dinner rush and hand over a list of food allergies for one of my tables. They hated it. And so did I. I would always try my hardest to ensure that they were paid attention to, but at the end of the day, unless it said peanut allergy…they were often not fully prioritized.
These memories flood my mind when I’m ordering at a restaurant. I communicate the degree of seriousness with my servers in hopes that they will relay it to their chefs. I hope. When it comes down to it though, my plate of food passes through A LOT of hands before it gets to my table, and I have to trust that each and every one of those people took my allergies into account. It’s a scary thought. Especially when I know what it’s like in the kitchen.
For years I’ve lived with the fear that what I’m chewing and swallowing could potentially take me out for 3-4 days. Every time I accidentally ingest gluten, this fear gets worse, as my reaction seems to amplify with each accidental poisoning. It’s created quite the spiral of anxiety when it comes to eating food prepared by others. It’s not that I think that anyone is intentionally trying to harm me, as is the case with the King, in fact, in all cases that I’ve become ill it’s been an honest mistake or miscommunication. Unfortunately, that realization doesn’t help me avoid the situation.
What I Do About It
I don’t have any magical way to help one get over this type of anxiety. (But if you have one, I’d love for you to share it.) I think the step I’m at right now is acknowledging that it adds a consistent underlying stress to day-to-day life. I must be aware of it if I am ever to heal from it. As far as eating out goes, there’s a number of things I do to avoid gluten poisoning.
I always ask. Never assume. Unfortunately, here in the USA, gluten is in everything. We use it as a filler, as a binding agent, and as a food staple. It is not safe to simply assume that something is gluten free, even if you think it should be. Did you know that there is gluten in many mainstream toothpastes? Or that soy sauce is actually made from wheat?
I bring my own food to most events. Even if there’s a chance there might be something for me to eat, I don’t risk it. If I don’t end up needing it, that’s great! But if I do, I won’t go hungry. Have you ever been in this situation…you go to a friend’s house for dinner, they know you’re gluten free. You double check with them to make sure you don’t need to bring substitutes. They assure you they’ve thought it all through. You’re half way through the shared meal, getting ready to start on the entree, and then it suddenly and casually slips that the meat was marinated in a delicious soy sauce recipe. UH-OH. Your hosts didn’t know that our traditional soy sauce’s main ingredient is wheat. All of a sudden your host is without food to feed you and you feel like the most difficult guest on the planet. It’s happened to me countless times. I bring my own food now, just in case.
I educate myself ahead of time. If I know I will be eating at a restaurant, I Google their current menu beforehand. It’s a quick way to learn if it’s the kind of place I can risk eating at in the first place. (When there isn’t one thing on the menu that doesn’t contain one of my allergens, I know it’s not a good place for me, even using substitutions.)
I stick to what I know. Boring…I know. But it’s safe. There are about 4 or 5 restaurants in my town that I have eaten at repeatedly and have never become ill from. These establishments typically offer cuisines which are traditionally gluten-free friendly. It’s because of these traditional tendencies that there isn’t a lot of room for cross-contamination or accidental inclusion. Indian and Vietnamese food are good examples of this.
I talk about my reaction to gluten. Whenever possible or appropriate, I share my experience with others. Why? Because half a decade ago, I had no idea how sick I was. I didn’t even know what it felt like to be healthy. Food allergies were the farthest thing from my mind. If someone hadn’t shared their own experience with me, I may never have connected the dots. After all, 7 years of doctors never did. Maybe my experience will help someone else. Maybe my experience will help you.