This post is specifically for my fellow celiacs and others out there who, for medical reasons, can’t eat gluten. If you don’t have celiac or a gluten sensitivity, I still encounrage you to read on because current statistics estimate that about 1 in 100 people suffer from celiac. Chances are, somebody you know has this issue and you just might be able to help them out in the future. For those of you who have been reading my blog for a while, you’ll know that I suffer from celiac disease. I know better than most how hard it is to navigate the world when you have dietary restrictions, and it’s even harder when you’re traveling because you’re away from the things you know are safe to eat and figuring out what you can eat can be a minefield.
What is Gluten?
I get asked this a lot, so I thought I would answer. Simply speaking, it is a protein that is found in wheat, rye, barley, and some oats. The more complicated answer is that people put this stuff in EVERYTHING (ugh).
What is Celiac Disease?
Some of you might not know what celiac is. I’ll explain. First, let’s talk about what it is not. Celiac disease is not an allergy to gluten. It is sometimes referred to in that manner, and I even catch myself telling restaurant staff and others that I have an allergy, because it’s an easier way of explaining quickly that eating the stuff will hurt me. But strictly speaking, it’s not an allergy. Celiac is an autoimmune condition. I could get into a lengthy explanation, but I’ll try to give you the reader’s digest version instead. When a celiac consumes gluten, their body attacks their small intestine, which damages the villi (little finger-like projections that line the intestine which help to promote nutrient absorption). This leads to the body not absorbing nutrients properly, as well as a host of other symptoms that can be quite severe. If left untreated, it can cause a host of very serious health problems over time and can even lead to an early death. Thankfully, a well-controlled gluten free diet can see me living a life just as long as non-celiacs, but carefully controlled is the key word here.
Celiac disease can present itself at any time in life. Some people are diagnosed as children and others don’t start experiencing the issues related to celiac until old age. For me, it manifested in my mid-20’s and slowly got worse over time. Those with celiac usually have a genetic predisposition to it, but don’t always develop celiac disease right away. For instance, I spent my childhood happily munching on sourdough bread, flour tortillas, croissants, cakes, cookies, and all other manner of gluten treats. In my 20’s, I started noticing that I was feeling really fatigued quite a lot. I noticed I was getting a lot of stomach bugs (or so I thought) and I would often have indigestion or vomiting after meals. I had a skin rash that wouldn’t go away even with the prescription creams given to me by my doctor. I had no idea what was happening to me and this went on for quite some time. It wasn’t until gluten free got trendy that it even occurred to me that it might be gluten. Desperate for a solution, I tried giving up gluten and it changed my life. My energy came back. My skin rash disappeared. I stopped feeling sick and nauseous all the time. I had my life back. After discussing with my doctor and looking into it, it became apparent that yes, I had celiac disease. Do I miss croissants? Of course I do! I freaking dream about croissants sometimes…but the improvement in my health is a far better feeling than eating any croissant will ever be.
What Happens When I Eat Gluten….
So now for the graphic description. All it takes is a very small amount. First, I start feeling a little pain in my stomach, sort of like indigestion, about an hour after I eat the gluten. Within several hours, it progresses to incredibly unbearable pains that come in waves. I would describe it as velcro made of razor blades being scraped along the inside of my stomach. Then comes the…umm..diarrhea. Sorry to be graphic, but that’s what happens. Lots of it. Sometimes I vomit as well, depends on how much gluten I ingested. This stage usually lasts about 2 days for me. I don’t really sleep much because I’m in so much pain, and I’m running to the toilet every 15 minutes anyway, so sleep wouldn’t help much anyway. By day 3, the stomach pains start to subside but I have lingering nausea and indigestion for at least a few days more after that, though it does improve over time. After the initial 48 hours or so of stomach pains and toilet runs, I get a migraine that usually lasts another couple of days. Sometimes I also develop a skin rash that shows up a few days after the episode. All in all, I usually feel pretty rotten for about a week after consuming gluten.
Sooo…Just Stop Eating Bread?
It’s not that simple. Gluten is seemingly in everything. Soy sauce? Yup, it has gluten in it. That means going out to Asian restaurants is like playing roulette with my health. Other sauces and dressings? You would be surprised how many have sneaky gluten added. Beer? Can’t have it. Even usually safe things like corn tortillas require meticulous label reading, because sometimes somebody mixes in some wheat flour. I also have to be careful of soups, which are often thickened with flour. In Asia, I have to be wary of all tea because it might be barley tea. You also have to be diligent at restaurants even when they do have gluten free items on their menu. I can’t count how many times I’ve ordered something sans gluten and it has come back to me chocked full of gluten because the kitchen either made a mistake or was careless with the preparation. If even a few crumbs happen to find their way into what I’m eating, I can get sick. That’s what’s scary about it. It’s very hard to avoid completely.
Why it’s Hard.
It’s not about the things that I can’t eat. It’s about how the world becomes a place where something like a simple meal can leave you sick for up to a week. It’s socially isolating. I have to be careful whenever I go out to any restaurants. I can’t drink beer (except GF beer, but it tastes horrible). I can’t go to breweries and enjoy beers with my friends. I can’t go out to a lot of restaurants that don’t have something I can eat, and even when I do go out I have to research ahead of time and grill the waitstaff to make sure what I’m going to eat is safe. This makes it difficult to be spontaneous, especially if I’m going somewhere new. It also makes communal meals difficult. Even if something is safe, seemingly innocuous actions such as dipping a chip into beer cheese and then into salsa means I can’t eat the salsa any more (this actually happened recently, and I looked on helplessly as my safe salsa became poisonous to my body without a second thought). Like I said, it’s socially isolating. House parties and pot lucks are also minefields. I always bring something that is safe for me to eat, but I can’t count how many times my safe food gets mixed up and tainted with unsafe food by some unwittingly careless person. Then I starve. Or everybody really likes what I brought and they eat it all before I can eat some, and then I starve because nobody brought something else I can eat. It makes me want to withdraw and avoid social situations, but I try not to.
That’s nothing, however, compared to traveling. Traveling with celiac disease can be such a difficult thing to deal with. When you’re in a new place and you don’t necessarily speak the language or know the area, knowing what is safe to eat and what isn’t safe can be extremely difficult, and depending on where you’re at, explaining to people what your dietary needs are and conveying the seriousness of the condition can be next to impossible. Still, I love the world and I love meeting new people and experiencing new cultures, and…yes…I love food. So it’s worth it to me to put in the extra work and find a way to make it happen. I wanted to share my strategies so that those of you out there who are feeling isolated can realize that celiac disease doesn’t mean you have to be stuck in your home town all the time. You can get out there and explore the world. It just takes a little preparation.
A Note for the Haters…
I just thought I would mention for a second that I’m pretty tired of all the haters. People find out you’re gluten free and they somehow get offended by this fact. They call you picky, whiny, needy, obnoxious, and all other manner of name calling (even if all you did was inquire about GF options). People accuse you of just being trendy or misquote some headline of some article they read where an outdated study said gluten isn’t bad. They accuse you and make you explain your entire medical history to them in order to make sure you’re not a “faker”. It’s exhausting. When you finally do convince people that yes, you genuinely have this problem, they then move on to say that you’re not the problem, but they hate the people who eat GF when they don’t need it. Here’s the thing…I have mixed feelings about those people. On one hand, people who eat GF when they don’t need to feed these stereotypes and make people question me. All the time. (ALL the time).
On the other hand, the fact that GF has become trendy means that I can go to a pizza shop with my friends and order a gluten free pizza. It means that the local sandwich counter offers gluten free bread as an option. Sure, it’s 1/3 the size of a regular slice of bread and costs $2 extra, but it’s available. It means restaurants have started adding GF options to their menus. It means grocery stores stock products that I can eat and make special breads, tortillas, and pastas just for me. It means things like Tamari (GF soy sauce) exists. Oh, how I love Tamari. It means getting part of my life back and feeling normal. It means being able to bring variety, excitement, and fun back into my diet. It means being more included in group outings (as long as the restaurant has something for me). It means being less isolated and not being the weird kid munching on a chicken breast she pulled out of a sandwich bag in the corner of the party.
So, my note to the haters is…just stop. Let people eat what they need or want to eat without giving them crap about it. Just relax. Stop hating. Please.
Traveling While Celiac…
My first advice to you would be if you are traveling somewhere new, do your research before you go. Remember that the farther afield you’re going and the more different linguistically and culturally from where you come from your destination is, the more research and preparation you’re going to need to do.
For instance, I live in Southern California. Living here and knowing the area, I’m reasonably confident I can go most places and find something gluten free to eat in my area. Worst case scenario, I pop into a grocery store where familiar, safe to eat products await me on the shelves. If I’m traveling around, say, the United States, I know several things…I know that I can fully explain and ask restaurant servers if they can cater to me. I know that I can pop into grocery stores, even grocery stores in very rural areas, and find things that I know are safe to eat. Depending on where I’m at, the options might not be that great (bananas and almonds for lunch, anybody?), but I know I won’t starve. When I traveled to Australia, for instance, I was pleasantly surprised to find that they are every bit as conscious of the need for GF options as they are in Southern California. I had no trouble popping into restaurants after seeing ‘gluten free’ mentioned on their menus posted outside. I actually enjoyed roaming the aisles of their supermarkets and discovering new gluten free products to take with me and try back at the hotel. It was wonderful. When I went to Japan, by contrast, I ate a lot of tuna rice balls from 7-Eleven and bags of microwaveable broccoli (also from 7-Eleven) because although I did occasionally find things I could eat, the safe option most of the time was the familiar, and I don’t speak Japanese so it was pretty hard to read labels or explain to locals the complexities and seriousness of my condition. I still had a great time and I did have a few special meals, but for the most part I tried to focus on not being hangry and just enjoying the rest of what Japan had to offer (which was a lot).
So, here’s what I do when I travel…
- Step 1: Research– The internet is a wonderful thing, as it allows me to extensively research the food situation in my intended destination the second I even have an interest in maybe going there. The first thing I do is take to Google and start looking up gluten free restaurants in my destination as well as gluten free products that are available in supermarkets and convenience stores. I look at message boards and ask questions of locals or those who have been there. Sometimes I even email restaurants, bakeries, and shops directly to ask them questions about availability. I keep my findings in a document, which I print out and take on the trip with me. That way, I have a ready-made list of safe options with me when I arrive.
- Step 2: Reservations and Inquiries– For all things including food that are booked ahead of time, I do more research into gluten free options (and of course book with the most GF friendly companies). I always order a special gluten free meal for my flights, and other activities, such as the amazing dinner cruise on the Seine I took with Bateaux Parisiens, I emailed them ahead of time to request a gluten free meal, to which they happily provided. Sometimes GF options are not available, such as a Geisha performance with dinner included I really wanted to do in Kyoto, Japan. Ultimately I decided not to go to the performance, but I could have also just eaten beforehand and requested not to have the meal as well. Sometimes these choices need to be made.
Often if you do find restaurants who will cater to gluten free diners, it is helpful to call and reserve your meal ahead of time and specify at the time of reservation that you will require a GF meal (unless it’s actually on the menu). That will give the chefs time to prepare ahead of time for your arrival.
- Step 3- Prepare– When it’s time to pack for the trip, I pack as much much food as I’m allowed to bring with me. This is where it’s important to check both TSA (or whatever your nation’s security organization is) regulations on what food you’re allowed to bring through security. Also check the food importation rules of your destination ahead of time. Once you know the regulations for security and food importation, feel free to pack lots of food within those guidelines. I find that packaged, processed foods often don’t pose much of a problem whereas fresh foods like fruits often aren’t allowed into countries. The key here is to bring yourself some emergency rations so you won’t be hangry. I like to bring things like Kind Bars, beef jerky, and Powdered nutrition drinks such as Huel with me when I go abroad. I can always buy fruit, nuts, and other naturally gluten free foods at the supermarkets once I get there. Regulations are a little better for food you plan on eating on the plane, and I do recommend you bring yourself enough food to last the whole time even if you ordered a special meal. You don’t want to starve because somebody messed up and forgot your meal, do you? Better safe than sorry. I like to bring sandwiches on GF bread, hard cheeses and rice crackers, as well as a couple pieces of fruit or some nuts with me to get me through the journey. I just make sure I’ve either eaten or disposed of anything not allowed into my destination before I go through customs. If I’m visiting a destination in Asia, one thing I like doing is ordering some gluten free Tamari travel packets on Amazon ahead of my trip. They are pretty small and quite a few of them can usually fit into your liquids bag, or of course you can always put them into your checked baggage without as much restriction. Since I can’t have regular soy sauce due to the wheat thickener, Tamari is an excellent substitute which I use in sushi restaurants and elsewhere to help get the full flavor experience.
- Step 4- If at all possible, Airbnb is amazing– I love staying in Airbnb properties (or VRBO, or other vacation home rental sites) whenever possible. The reason it’s amazing is that they more often than not come with a kitchen or kitchenette at which one can prepare their own food. My first step after arriving and settling in is usually to venture out and find the supermarket. That’s where I shop for things I know are safe to eat that I can cook and prepare back in my accommodation. I also usually buy (or pack with me) some sandwich bags that I can use to pack meals and snacks to take around with me as I explore. I find that always having something to eat on hand saves me when I get into situations where there is nothing reliably safe to eat around me. Not only that, but I actually enjoy exploring supermarkets, especially in other countries where I can get a deeper sense of the local culture and discover new things. Even in the most difficult to navigate (food-wise) countries, supermarkets will almost always reliably have something you can eat. When in doubt, raw fruits, nuts, and vegetables are always safe. Boring, but safe.
If you can’t get an Airbnb for whatever reason, you can still go to the supermarket. I stayed at a hotel room in Queensland, Australia with nothing but a mini fridge and I stocked it full of yogurts, cheeses, GF deli meats, and other such items. Outside of the fridge I had my gluten free bread that I bought, some rice crackers, and some other safe foods I found. Just work within the confines of your situation.
- Step 5- Be Brave! Ok, so it’s all fine and good to eat your rice crackers and bananas the whole time you’re away. But a big part of traveling is definitely experiencing the local food culture. It can be frustrating when you’re in England and your husband is chomping away on meat pies in front of you and you can’t try one, or you can’t go with everybody to the ramen shop in Tokyo, so you sit at the Airbnb watching Japanese TV and eating plain white rice while your group savors local flavor. (Good thing Japanese TV is actually pretty entertaining). I get it. It sucks! But don’t let it get you down. Instead, try and focus on what local specialties you can eat. I loved eating jacket potatoes in England, grilled “hot chicken” in Nashville (it’s usually fried, but Hattie B’s does a grilled version that was delicious), and mochi desserts in Japan. Do some research on what you can eat, and get out there and try it! Also don’t be afraid to talk to people and explain your situation. If you don’t speak the language, download some celiac restaurant cards (available online everywhere, just Google for the country/language you need). You may get turned down a lot, but don’t let it get you down. Just move on and try another place. The rewards of finding a chef who is willing to make something special, just for you, are incredible.
- Step 6 – Bring in the professionals – Let’s face it…some destinations are more difficult to travel to than others. Australia was easy. France was easy. Japan was a little more difficult, but the prevalence of some naturally gluten free items at 7-Elevens all over the country made it manageable. Lately, I’ve been looking into visiting China and it does seem like it’s going to be more difficult. In larger cities, there are usually some restaurants that will cater to GF individuals, but even there it doesn’t seem to be as prevalent as elsewhere. That’s why I’m considering booking my China getaway with a travel specialist who has a relationship with hotels and restaurants in China to help make sure I can get some GF food. I’ll also be bringing as many snacks as I’m allowed, by the way. I contacted these guys with some questions and they seemed very thorough.
- Step 7- Be prepared for the worst happening– Sometimes even when you’re careful, that damn sneaky gluten can still manage to find it’s way into your stomach. I know that sinking feeling all too well…I just realized that I consumed gluten and that the next several days are going to be awful. It’s not a good feeling and one I try to avoid at all costs. Honestly, if you follow my above tips, you’ll likely be pretty safe, but it does happen. For me, it usually happens when I am a little less than diligent. If I haven’t been glutened in a while and I think something is OK without investigating too much. Then, BAM! It hits me. It’s the worst.
Prepare for this ahead of time to help minimize your agony. I always try to bring some ginger tea, some turmeric pills, some probiotic pills (make sure the ones you buy are GF), as well as some Pepto Bismol, Imodium, and Alka Seltzer tablets. Some antacids (also make sure these are GF, not all are) are good things to pack. If you do get glutened, make sure to rest, drink a lot of water, and take it easy until you’re feeling a little better. The above items can help.
Focus on what you can do, not what you can’t do. Seek out treats that are safe. Prepare and research ahead of time. Most of all, have fun! If you’re eating a bag of rice crackers for lunch while you explore the Great Wall of China, don’t be distressed that your friends are all eating amazing looking Chinese food and you’re not…instead focus on the sights you’re seeing, the people you’re meeting, and the things you’re learning. Celiac disease doesn’t have to be a prison sentence if you don’t let it be. Get out there, explore, and enjoy the world.
Do you have celiac disease? What sort of food experiences have you had while traveling? Any tips on traveling while celiac that you would like to share? Any favorite remedies for feeling better after getting glutened? I’d love to hear about it…leave a comment!