In December 2021, my daughter was diagnosed with celiac disease.
She was first screened for celiac in 2014, when she was 6 years old. She had some of the markers, but since she didn’t meet the threshold for diagnosis, her gastroenterologist labeled her as having “latent celiac disease.” Our instructions were to screen her regularly and to let her eat as much gluten as she wanted, since it would be necessary for gluten to be present in her diet in order to diagnose her accurately. And we did just that.
Shortly before we moved to Japan in 2020, some routine bloodwork suggested that more testing was indicated. However, due to COVID and our impending move to the other side of the world, her gastroenterologist allowed us to postpone the testing until we were back in the US. So in December 2021, during our first visit home in over a year, my daughter had an upper endoscopy. Her doctor performed a biopsy of her intestines, which confirmed the diagnosis we’d been postponing for 7 years: she had celiac disease.
What Is Celiac Disease?
You may associate celiac disease with being “gluten free,” but celiac is more than just a gluten allergy – it’s an autoimmune condition. When someone with celiac eats gluten (a protein found in wheat, barley, and rye), the immune system attacks and damages the small intestine. Even the tiniest amount of gluten will cause damage, so it’s critical to remove 100% of gluten from the diet, including gluten ingested via cross contamination.
This is tough under any circumstances. Gluten is ubiquitous in the diets of many cultures, and special care must be taken to keep someone with celiac safe. It’s not just a matter of swapping regular bread for gluten free bread. Everything from food preparation to food storage must be carefully managed. Dining out and buying packaged foods can be especially tricky. Labels must be read meticulously.
In the United States, food labeling and the prevalence of gluten free food choices makes this less daunting. But now imagine living in a country where you can’t speak or read much of the language. And on top of that, you’re in a place where celiac disease is exceedingly rare, and gluten free food choices are few and far between. That’s the predicament in which we found ourselves in 2022.
Celiac and Gluten Free in Japan
Celiac disease is nearly unheard of in Japan. The statistics I’ve found online place the prevalence of celiac below .2% of the population (compared to about 1% of the US population). And while Japan is generally pretty allergy-friendly, gluten is rarely noted on product labels.
Japan recognizes seven main food allergens, which most food labels address: shrimp, crab, eggs, milk, peanuts, buckwheat, and wheat.
Japan requires food manufacturers to label items containing the main seven allergens. The other ingredients listed above are recommended but not required.
It’s very helpful that wheat is identified on packages. One of the first things we did was learn the kanji (character) for wheat: 小麦. This bag of chips, for example, contains wheat:
Usually we scan for the kanji, and if we don’t see it we read the label with Google Translate. We also have to check for barley, which is more prevalent than you might think, as well as hidden sources of gluten like malt vinegar and some types of yeast. Soy sauce is one of the most commonly used ingredients in Japanese dishes, and it contains wheat. Fortunately, gluten free soy sauce is pretty readily available in many Japanese grocery stores.
This is just the tip of the iceberg! The learning curve has been steep, and we are still learning new things constantly. Luckily, we have the support of an awesome pediatric gastroenterologist in Florida and (shockingly), a registered dietician/nutritionist based in Japan.
I’ve also been able to take gluten free cooking classes with a Japanese instructor, where I learned to make GF versions of some popular Japanese dishes. She’s given me permission to share her recipes and cooking instructions here with you! Keep an eye out for that in future posts. I’ve learned to do quite a lot of Japanese cooking with modifications for my family and our various food restrictions, and I think you might find some of them useful. I also have some product recommendations to make your meals as authentic as possible! I’m excited to share what I’ve discovered and learned.
P.S. If you are gluten free and planning a trip to Japan, I highly recommend the Gluten Free in Japan! Facebook group (formerly called Gluten Free Expats Japan). You’ll find lots of recommendations for restaurants, snacks, and other tips for a successful gluten free trip to Japan.