What it’s like to Travel with Celiac

These first 5 paragraphs are the story of how I found out I had Celiac. If you want to skip straight to my gluten-free travel adventures, just scroll down to point #1. 

Well here is one way growing up is insanely weird: you may randomly develop allergies as you get older. I’ve had pretty bad allergies my whole life, ranging from cats to pollen to dust. Luckily none of these were life threatening and just consisted of getting the hardcore sniffles, anything Claritin can clear up.

Then my senior year of high school hit and something happened. I specifically remember on prom night at dinner, I got the most awful stomachache but tried to keep it together because, well I mean, it was freaking prom! My stomach hurt for a few hours then I felt a little better after that. Most days after that, my stomach would hurt, sometimes never stopping from the day before. I was thinking maybe it could be from the stress of getting ready for high school graduation and going away to college soon, but the stomachaches continued after I got to college. Sometimes, I would be fine for about a month. Other times, my stomach would hurt every day FOR a month. It was completely sporadic and I knew I had to try to figure out what the hell was wrong with me.

After talking to my mom, she thought I could possibly be allergic to something. After taking a fun allergy test and getting my blood drawn, I found out I had also developed an allergy to dogs (I’ve had dogs my whole life, but when I went off to college I wasn’t around them anymore. Apparently, it’s common for this to happen…so weird). But that couldn’t be it. I remember I was at Universal Studios with my family in line for the haunted house when I got the call. My blood work had come back and showed that I had Celiac Disease. I had no idea what the heck that was and didn’t know what a “gluten” was either. They listed the main sources of gluten and I couldn’t believe it…it was literally everything I loved in life. Bread, pasta, CAKE.

I didn’t start going on a gluten free diet until a month later in January of 2013, after confirming that I had Celiac Disease from an endoscopy. It was difficult at first, and I still find myself discovering the most random things that have gluten, like soy sauce, milky way’s, Mike’s Hard Lemonade, and even garlic powder sometimes! I had recently gotten back from a Mediterranean Cruise before I got tested for Celiac, and after struggling for the first few months of going gluten free, I wondered if I would ever be able to travel again. Luckily I discovered I had Celiac right as it was becoming a huge fad diet, where everyone was starting to eat gluten-free even if they did not have to, so it has gotten easier and easier to eat gluten free.

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*The Celiac Travel Cards that I mention below, and what they translate to.

Still, I found myself struggling in America when I went out to eat, so I wondered if I traveled abroad I’d just end up severely glutenating (a word I made up combining “gluten” and “contaminating” for when I accidentally consume gluten) myself and dying or something. Well in the Fall of 2014, I made plans to travel on Semester at Sea and with the HUGE help of Celiac Travel Cards I was able to have a rather smooth experience in every country I traveled to. Without further ado, here is what it is like to travel with Celiac Disease:

1. YOU MAY FEEL LIKE YOU ARE A BURDEN TO OTHER PEOPLE

Every time I walk into a restaurant in any foreign country, I immediately ask the host/hostess if there are any gluten free options on the menu. Many times, people say “no” or do not even know what gluten is, so there is no way I can eat there. If I’m with a group of other hungry people who could eat literally anywhere, I feel bad when I tell them I cannot eat there. Truth is, it is not my fault I have Celiac since it is genetic, and I always tell people that they can eat at any restaurant and I can meet up with them later. First, eating alone does not bother me, but people are always nice and always agree to come with me to find a restaurant I can eat at as well. Second, my “findmeglutenfree” app works in the majority of places I’ve been to and helps me find restaurants with gluten free options around the area!

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*Delicious meatballs the app led me to in Madrid.

2. EATING GLUTEN FREE IS ACTUALLY PRETTY EASY

If I go to a restaurant and they do not understand what gluten is, that’s when I whip out my Celiac Travel Card. It’s amazing because these amazing people have translated the cards into 54 different languages, explaining what a gluten allergy is and what I can or cannot eat. After someone at the restaurant reads it, the majority of the time they understand and say they can accommodate me or substitute some items on the menu. That’s when I have to choose to risk it or not. See, the problem with having Celiac disease these days isn’t really about eating gluten free. When in doubt, I always go for white rice, grilled chicken, and veggies with no sauce. The problem is cross-contamination: when my gluten-free food is made on shared equipment with food items containing gluten. Even one tiny bread crumb can give me a stomachache, and that can easily get in my food even if they’re just cooking my food in shared kitchen space. The Celiac travel cards do not talk about cross-contamination so I either have to try to translate it myself, hope the waiter speaks English, or just play a huge game of charades. It’s a risk that I have to take when I travel, but I really try to explain that they need to at least wash the pan thoroughly.

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*It’s nice to have different food options. This 100% gluten free bakery was just a 10 minute walk from my hostel in Budapest.

3. SNACKS ARE A LIFESAVER

I always stuff my backpack with snacks when I travel, because it might be heavy at first but will keep getting lighter and lighter as you eat them. My favorite is Kind Bars, which are delicious and quite filling. Whenever I venture off for the day, I make sure to bring at least 3 just in case I find myself in a rough situation. Countries in Asia are where I ate so many Kind Bars I started getting sick of it. Most Asian countries do not know much about Celiac and also have a lot of flour in their diet (soy sauce, noodles, tempura, even sushi rice has gluten in it sometimes) so I found myself only able to eat rice at some meals which is not fun to eat for every.single.meal.

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*Besides Kind Bars, I load up on cereal. Those symbols apparently mean “gluten free” in Hebrew.

*Oh, and it’s always fun when you’re stuck on a plane that has no gluten free food and you have some Kind Bars with nuts, then hear an announcement how there is a nut allergy onboard so you can’t eat anything. (I have GREAT luck as you can tell…)

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*I am always happy for yummy in-flight meals that accommodate me!

4. YOU MAY FEEL A LITTLE LEFT OUT

Luckily I’m pretty content with what I have, but there are times when I wish there was some magical cure to Celiac (no, there isn’t so I am stuck with this for life.) These times involve everyone else experiencing a food or beverage and raving about it, and I just sit there wondering how amazing it is. This has only happened a few times, but drives me crazy every time. From everyone except me salivating over naan in India, being unable to try any Japanese desert in Kyoto, and having to drink wine in a freaking BEER GARDEN in Munich, sometimes I wish I could just have a cheat day. But a cheat day for me would result in the worst stomach pain possible so that always helps me feel better and urges me to find an alternative food or beverage to enjoy.

 

 

 

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*Top is me drinking wine while everyone else was drinking LITERS of beer in Munich, Germany. My other drink alternative is gluten free beer as shown in the middle picture in Tel Aviv, Israel but I don’t like the taste of beer. Lastly is hard cider which is my favorite alternative to beer, as shown in this picture taken on the streets of Budapest, Hungary.

5. YOU PROBABLY WON’T FEEL 100% WELL, 100% OF THE TIME

Some Celiac’s are not too sensitive, while others are insanely sensitive. Some have gluten contamination symptoms that are mild, and others are severe. I have met someone with Celiac who didn’t get any stomachaches when she consumed gluten, but rather felt mentally foggy. I have met another person who wasn’t even Celiac and had the craziest stomach reactions to gluten. I myself get very bloated, get a stomachache that can last for days, and sometimes feel a little out-of-it mentally when I accidentally consume gluten. Like I said above, eating gluten-free is not really the problem; it’s watching out for cross-contamination. When I was in Israel over the summer, I was surprised because I went about 3 days feeling 100% fine with no food complications. Then I accidentally ate one bite of orzo (it looked like just plain rice…) and it all went downhill from there. I don’t even know how long it takes for gluten to completely get out of your system, but I remember hearing somewhere that it could take MONTHS. From one bite of orzo pasta. It’s probably still in my system now, almost 5 months later. FML.

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*It’s easy to mix up what is gluten free and what is not. This tapas place in Barcelona, Spain could make any of their tapas gluten free, but they had to be extra careful about not mixing it up since the tapas looked the same whether gluten free or not

6. YOU WILL FEEL LIKE YOU CAN DO ANYTHING

It’s complicated enough to travel to foreign countries and make your way day by day. From coordinating transportation to finding activities to do where you are, it takes a lot of effort to plan everything out and have everything go smoothly. All of these things you can book on a computer with minimal human interaction. When it comes to meals, you can walk into a place and point to a menu (something that all SAS’ers did especially in Asian countries), and the waiter can get your order right even if you don’t speak the same language. But since I need to give them my Celiac travel card and attempt to explain to them about cross-contamination, I feel so successful when they understand and when I successfully get a good gluten-free meal. It’s definitely my biggest challenge when traveling, so I feel like if I can successfully not poison myself, I can do ANYTHING.

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*I saw a girl wearing this shirt at the end of a night out on Ben Yehuda Street in Jerusalem and decided I’m going to OWN being gluten free. It is now my Facebook profile picture.

So, there’s a little peek of a day in the life of a traveling Celiac. Overall, it does get annoying having to explain my allergy at every meal, but it’s absolutely vital to my health so I can’t complain. I’ve had memorable times with friends trying to find restaurants, and I am always getting snapchats of my friend’s in grocery stores whenever they see a gluten free item. As long as that makes them think of me and brings back fun memories, I’m fine with being “that gluten free friend.”

*Have you ever traveled with anyone gluten free or are you also that “gluten free friend”? Feel free to share your story in the comments below and I’ll be sure to respond! I’d also love to hear if you have any memorable stories with me if you know me personally!

P.S. With all this gluten free talk, I’m going to go eat my cake now. Yes, there’s gluten free cake and it’s damn good.

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