- Living with シリアック病
Donal Benson, Hyogo
My name’s Donal, I’m a second-year JET from Australia living in Kobe City, and I have had Coeliac Disease for four years.
My first experience with Japan and Coeliac Disease came one week into a University exchange program I did back in 2010. I was called by my doctor, a week after I arrived, to inform me that I had Coeliac Disease and to stop eating bread. It was a difficult time. I got sick a lot, as I was still learning what I could and couldn’t eat. But I passed my exams and learned a lot about what it means to have Coeliac Disease in Japan.
What is Coeliac Disease, you ask? Here’s a quick breakdown for you:
Coeliac Disease is an auto-immune disorder that affects the stomach and intestines when it tries to process gluten, and it’s incredibly common in Western society. It affects 1 in 133 Americans and about 1 in every 100 Australians. Reactions to eating gluten range from absolutely no reaction to being rendered comatose in hospital. It can be pretty severe. And it takes only 1/40 of a slice of bread to do damage to your stomach. If left untreated, it can also cause a range of further complications, the worst of which is bowel cancer. There’s no cure, too. Only a life-long gluten-free diet is the only known preventative measure around.
So just what is gluten? As Seth Rogen says in This Is The End, “Gluten’s a vague term. It’s something that’s used to categorise things that are bad. Y’know, calories, that’s a gluten. Fat, that’s a gluten.”
He’s right, and he’s wrong. Well, mostly wrong.
Okay, all wrong.
Gluten is a protein found in grains—wheat, rye, barley, and triticale—and oats. It’s also found in any products that use a derivative of these grains. The most common use for gluten is as a thickening agent for sauces and pastes, and it’s what gives bread that “stretchy” feeling. It’s in almost everything, even some things that might surprise you. Like soy sauce. Yeah, soy sauce—the base ingredient for a lot of Japanese food, meaning that eating it is out of the question.
With that in mind, you might be thinking “Geez, how can someone with Coeliac Disease survive in Japan?” It’s a good question, and I’ve found the answer to it is “Pretty easily, as long as you keep it simple.”
There are two major times where you have to be careful. The first is eating out. With your friends, it’s pretty easy to find somewhere that you can all eat at. At school enkai, it’s probably going to be a bit more difficult. The other time you have to be careful with is when you’re sick or injured, and you need to go to a doctor.
At worst, when you’re out and about in town and want to eat you can find a chain restaurant like Saizeriya or even Sukiya. Both places offer things that Coeliacs can eat—salad and rice. At Saizeriya you can even get a steak. Even McDonald’s is an option—worldwide, their fries are gluten-free. The problem is these places aren’t that interesting or healthy, food-wise (except the salad with no dressing). But they are simple.
At best, you’ll find some expats who have opened up a restaurant. Indian and Thai restaurants are generally safe bets. As with all things, make sure they fully understand what you need. You’ll probably become a regular. At my favourite Thai restaurant, one time the owner kept a table reservation open for me for an extra half-hour, as I was running late, on a busy night. All because I go there often, and I go there often because she is totally willing to accommodate me and my requirements (not to mention it’s absolutely delicious!)
Enkai are another story all together. Going out with all your teachers to celebrate and unwind, sounds great, yeah? Except there’s only that one, recurring problem—what do you eat? All of my enkai have been at Chinese restaurants. Next to Japanese cuisine, Chinese is tied for first place in the “most dangerous cuisine for Coeliacs” race. That said, every time I’ve had at least one teacher chase down a waiter and work something out for me.
If you’re unlucky, this might not happen, and you won’t be catered for. While you can have a great time, you’re still missing out on a part of the whole experience. But enkai are a great opportunity to explain to your fellow teachers about Coeliac Disease. You’ll also blow their minds that such a condition exists, and especially when you tell that what foods you can’t eat. When I tell my teachers that I haven’t eaten bread in four years, it’s like telling them I have no nose or lungs. It’s completely inconceivable to them. After you’ve talked to a few teachers about it, hopefully they’ll try and get you something from the restaurant that you can eat—even if it’s just rice, it’s better than nothing! Chances are, next enkai they’ll know in advance about you and will ask you to tell them what you want.
Now, getting yourself better when you’re sick is hard enough on its own. When you’ve got to deal with medicines as well, sometimes that makes it just that little bit more difficult. The first time I had to visit a hospital while on JET was to refill my foreign prescriptions. I told the doctor, while he was searching for Japanese equivalents of my medications, that any pills must not contain gluten as I am Coeliac. He looked at me, puzzled, as I explained the disease to him in Japanese. He had never heard of it.
He continued his search after calling the dietician of the hospital to see if they had any information about it. Fortunately the dietician, as well as a paediatrician, had heard of Coeliac Disease. They were able to inform the doctor I was seeing, to some degree, and he was able to prescribe me a medicine that was gluten-free. I think that doctor was an isolated case. Every other doctor I have seen has had a full knowledge of what Coeliac Disease is and what it entails. I’ve had great experiences when dealing with them.
There’s an old adage that gets bandied about, K.I.S.(S.)—Keep It Simple (Stupid)—and I really think it applies to creating a comfortable life without Gluten in Japan. Of course, ESID applies, but for the most part you’ll have access to a supermarket—sometimes with an import food section, sometimes not—and usually there’ll be a greengrocer or other place that sells local produce. From these two stores, you’ll be able to get everything you need.
You’ll probably find yourself cooking more often than not. I cook dinner every night, and make enough that I can take the leftovers in for lunch the next day. The only problem is the repetition—there are only so many days that you can eat (meat) + vegetables + rice before it gets old. The trick is to… Well, there’s no trick. Sometimes you’ve just got to grin and bear it. It usually passes quickly.
Be prepared to spend a lot of money on food. Fruit and vegetables are going to take up a lot of your grocery budget. This is one time where living in the inaka wins out—you can grow your own vegetables a lot easier. And if you are going out, it’s a good idea to take something with you in case you get stuck somewhere where you can’t eat.
Be prepared to wish you could eat everything you see. Especially whatever it is your friends are eating, that’s always the most delicious thing (this isn’t limited to Japan though). Doubly so when it’s late at night and all that’s open is the conbini—it looks twice as appetising then.
I think the best way to keep yourself healthy in Japan is to do everything that you’ve been doing in your home country—keep your food simple.
The next best step you can take is to make sure that your BoE, your school, your local hospital and pharmacist, and your friends are aware of the full nature of Coeliac Disease. Yes, this will take a lot of time and you’re likely to have the same conversation over and over again. People are going to offer you food, then apologise as they realise what they’ve just done. Just think of it as your second first diagnosis, and you’ll be fine.
To that end, Autumn and I have started a group for Coeliac JETs to get together on Facebook. There, we can help find resources and recipes for each other while in Japan. So far there’s been a good amount of new information come through, and it’s nice to have the place where everyone knows what you’re going through.
The next step I would like to take with this community is talking with CLAIR to provide some information for them that they can pass on to incoming JETs. If you’ve recently been diagnosed and have no Japanese, sorting out your food situation is going to be a huge pressure, and if there’s a little guidebook waiting for you at Orientation it will just make that, and life, easier for you.
Ideally, I would love to take this all the way to the Ministry of Health, Labour and Welfare, and provide them with some literature that they can use. While they have some good policies on allergens, there’s certainly room for that to grow. And there’s definitely a need for it. As it stands now, the second hit in Google on my computer at school for “Coeliac Disease” is “Coeliac Disease意味(imi – meaning)”. And moreover, with the Olympics coming up, there are lots of Coeliacs that are going to want to visit, and they all need to eat.
I could go on and on about this, I really could. But if I were to sum up all of my experiences of living in Japan with Coeliac Disease, I would say it has been very positive. It’s just like Australia. As long as I can get my staples—good fresh veggies, some nice (Aussie!) beef, and rice—I’m set.
Japan’s pretty easy for Coeliacs, if you keep it simple.
- A Gluten-free Journey
Autumn Widdoes, Okinawa
When I first arrived in Japan in late July 2010, I knew that I was about to embark on a very different experience than anything I’d ever faced before in my life. This wasn’t my first trip overseas, or even living in Asia, but it was my first time living in Japan, and my first overseas experience since going gluten-free in my mid-20s. I had followed a relatively strict gluten-free diet up starting in 2007. Up until 2010, I had been living in New York, which is a city with an abundance of options for those of us following this diet. Before moving to Japan, I did a ton of research on what I could and couldn’t eat in Japan and had emailed my coordinator in Ishigaki, Okinawa as well as my fellow JETs on that island.
I figured that if I made it clear to them what gluten was and what I could and couldn’t eat, then everything would be right as rain. Even after all this research, I didn’t completely comprehend or perhaps was just in denial of how much gluten was in the Japanese diet. Unfortunately, as soon as I reached Tokyo, I realized I hadn’t prepared enough for the lack of culinary options. Beginning at the Keio Plaza, I found that the odds were not in my favor. Hunting for food I could eat without getting sick seemed daunting.
When all that was served for lunch the second day of TOA was spaghetti, I started to get a panicky feeling, and I still hadn’t made it to Ishigaki, a small island in the Yaeyama region of Okinawa. Since I was without a kitchen for those several days and I didn’t have a gluten-free dining card, I had to rely on those around me to help me figure out what was safe and what was unsafe to eat. I also no longer had the gluten-free labels that I had grown accustomed to and, while I did know how to cook for myself, I suddenly felt overwhelmed by the lack of anything familiar. I was out in the deep ocean without a life preserver. It’s easy for someone with a dietary limitation to feel isolated from others, since eating is such an important part of socializing. Moving to a foreign country, where you barely speak the language, and also have a dietary limitation can be extremely overwhelming and have a real impact on the culture shock you face as you adjust to your life in Japan. Moving to Japan threw me back into the process of relearning how to live a healthy, gluten-free life.
Living in Ishigaki, a sub-tropical island in the most southern part of Japan, was an amazing experience. Far removed from mainland Japan and even Okinawa Island (it’s approximately 1 hour away from Naha by commercial airplane), Ishigaki is one of the more remote areas of Japan. Living on that island taught me quickly that I would need to cook my own food, since I worked at over 20 junior high schools in all of the Yaeyama islands and I couldn’t eat the school lunches. Additionally I had to overnight on several of these islands in order to reach some of the schools that I taught at.
It was an adventurous job that kept me on my toes, but it also was a major adjustment for me, a girl who was accustomed to NYC’s fast pace and instant access to anything I needed for my diet with its gluten-free bakeries and specialty restaurants. I sometimes found myself waking up several hours early to pack 4-5 bentos for a two day trip to Funauki (a small town with 40 people that can only be reached by ferry) on western Iriomote Island. I started to hate cooking that year (thankfully I’ve now recovered from this). Though I had the option of eating at the minshuku or hotels where I stayed, I found that explaining my dietary issue didn’t prevent me from being exposed to hidden forms of gluten.
After several months of playing it safe, I started to take chances again. I was envious of my fellow JETs who could eat anything they wanted and who often wanted to go out to eat whenever we happened to meet up. I wanted to go out to restaurants and when people assured me that the food had no wheat or soy sauce in it, I believed that it must be gluten-free. This was especially true when I started dating my boyfriend at the time. Dating, while following a gluten-free diet, is never as simple as it seems with this disease. Even in our home countries, the limitations and requirements your body places on you automatically scare people away or trigger reactions that range from “a little bit won’t hurt you” to “people can get over their allergies,” to ambivalence, annoyance, an inability to understand just how bad it gets when you ingest gluten, and, at times, resentment.
I could write an entire article about just how much a gauntlet you must run in order to have a nice meal out with your boyfriend or girlfriend in the USA, but doing this in Japan makes it even more of a challenge. Anytime you go to a restaurant that doesn’t have a proper setup for gluten-free food prep (none of these exist in Japan, as far as I know), you’re running a risk that the chef will mistakenly serve you food that has gluten in it or you’ll be at risk for cross-contamination. Your dietary requirement can start to seem like a demand. Weariness towards eating at the same restaurant(s) may set in. It’s not easy being gluten-free when it comes to socializing outside of your home around food.
But, it is easy being gluten-free when you decide to stop eating at restaurants. When you learn to reject the social scene and create your own scene, by hosting GF (gluten-free) dinner parties or picnics, and learn enough about what products you can safely prepare or find in import stores. Even in the allergy section of a larger grocery store (in the larger cities, these allergy-free food aisles often exist), your choices expand and your limitations no longer imprison you.
As Donal wrote, the best way to follow a gluten-free diet in Japan is to keep things simple and to cook for yourself. Get creative when it comes to dating or hanging out with friends by doing other things besides going to restaurants. Find ways to teach your Japanese co-workers about Celiac Disease/gluten sensitivity. Most Japanese people have never heard of it and don’t know what gluten is, but they are usually very respectful towards people who have stated that they can’t eat certain foods. Most of my teachers have gone out of their way to make certain that I am provided with something to eat. I have only had one bad experience since moving to Japan. The most important thing though is to learn to be honest with yourself and your time, because you’re going to spend a lot of time cooking and teaching yourself what you can and cannot eat safely in Japan.
During my first year on JET, I really had to learn the hard way how to survive in Japan on a gluten-free diet. Because I didn’t fully comprehend the emotional aspects of this disease and how all of the food choices I had prior to Japan had suddenly disappeared, I had to go through the process of anger, denial, and eventually acceptance while also going through culture shock. Going through this was a difficult experience, but it did teach me to embrace living gluten-free with creativity and to become more actively aware of what I was eating. I now live in Naha, Okinawa, where I teach at one high school (instead of 20 schools). Both living in a larger city and being based at one school has made a limited diet much easier to deal with. Plus, I have learned from experience what is safe and what isn’t safe to eat in Japan.
I now follow a modified primal diet and focus on cooking with organic and local vegetables, fruits, fish and meat. I am very careful to avoid processed foods or drinks (where a large amount of gluten hides). I’ve had to give up convenience for a deeper understanding of food and its effects on the body. While I don’t have the chance to try all the wacky, cool food trends or the classic Japanese foods at restaurants and I don’t have the luxury of eating a convenient bento or onigiri when I’m hungry, learning how to prepare Japanese food gluten-free style has been a reward in itself.
My advice for JETS who need to follow a gluten-free diet while living in Japan is to reach out on the Facebook Gluten-free JET forum and ask questions. We’re trying to build a community and if you ever need any assistance, you can always reach out. I also suggest learning as much Japanese-food-related kanji as possible and investing in a detailed gluten-free dining card. Finding a doctor who understands what Celiac Disease is will also help. I was able to speak with a nutritionist who located several restaurants that understand what Celiac Disease and gluten was and were able to cater to my needs.
Don’t suffer silently. Make certain you have the support you need at your school and that you’re taking care of yourself and your health.