FoodAllergyMom

I had wanted to reply sooner but I've been really busy. My husband and I run a home-based business and he was travelling last week, leaving me to do everything myself -- no time for extra stuff! Anyway, I really appreciate everyone's help in this matter. It's very confusing. I'm not sure if it would work out to have someone actually accompany us to restaurants, as we have no idea exactly where we'll be eating at any given time. My husband is opposed to the idea of a stranger being with us (although I don't have a problem with it). I was pitching the ideas of hiring a tour guide but he doesn't like that idea. He has been to Tokyo and feels that we can get around by ourselves. I wish he wasn't so stubborn on this matter. We've argued about it on and off for the last few months. I expect that we'll probably eat breakfast at our hotel, so once we get our hotel kitchen squared away with the food allergy information, that should be good. We plan to stay at a very good hotel like the Royal Park Hotel or the Dai-ichi Hotel (haven't made the reservation yet but will soon). Lunch and dinner will most likely be when we're out and about seeing the sights. This is when it will get complicated. We plan to stick to foods we're more familiar with, such as sushi, rice, and grilled meats that aren't marinated. Or non-Japanese food like hamburgers or pasta. I'm sure we'll also take packaged stuff from home with us in a backpack, just in case. Are there translation services that are available by phone? I'm thinking about a service I can call, where I tell them in English what needs to be said, and then give the phone to the chef to hear the translation. Ideally, it would be good if I could establish a relationship with the translation company so that they know "my story" in advance (to save time explaining it every time). Am I just pipedreaming, or does such a service exist? I'm also trying to decide whether to get the "food allergy card" made by one of the companies that makes them, or to have some of you guys (or a translation service) help me make a custom card. The ones you buy from various companies are rather limited in what they say.

Thank you all so much for your suggestions and comments so far! Please keep them coming! I will respond to individual posts in a few days. In the mean time, here is a general reply to a couple of posts: Regarding soybean oil -- My kids do not seem to have a problem with soybean oil. I assume that this is because the protein has been removed in the process of making the oil. I'm not sure if soybean oil would be different in Japan -- or if cheaper versions of the oil would in fact be more allergic. All I know is that they eat foods with soybean oil and soy lecthin all the time and have never had reactions to them. Regarding responsibility -- I am well aware that ultimately the responsibility for our kids' wellbeing lies on the shoulders of me and my husband. Here at home, my kids don't eat any packaged foods without ingredients listed. And when we eat out, we always "ask", and we order foods that have a low likelihood of containing soy or nuts, such has pasta, burgers, pizza, salads, etc. Initially I was not in favor or visiting an Asian country because of our kids' allergies. My husband and kids put a lot of pressure on me, pointing out that we have been all over the world (New Zealand, Costa Rica, Canada, Hawaii, Caribbean, various US States, France, London, Ireland) and nothing has ever happened. What makes this the MOST challenging trip is the lack of common character set -- and we don't read Japanese! It's a much tougher language barrier than we've ever been up against before, and it makes me very nervous. We have been extremely lucky because our girls have never had a life-threatening reaction and have never been rushed to the hospital. In fact, they have never had to use their Epi-Pens. We discovered the allergy when my older daugther began mysteriously vomiting after eating "something" at around 18 months old. She would eat the mystery food and suddenly vomit about 20 minutes later. That was it. No hives, nothing else. We finally narrowed it down to peanuts. We had her tested by the allergist (skin prick test) and sure enough, peanuts and other types of nuts and legumes were off the scale. She didn't develop the soy/legume allergy until later. In fact, she used to love tofu. Then it started making her throat itch around age 4. Then other foods containing soy protein made her throat itch and her lips swell. That was when I discovered that soy and peanuts are botanically related and have avoided it ever since. (The allergist never pointed this out to me...I'm still upset with him about it). At that point, I began doing a lot of research on my own to educate myself about "legumes." I know a LOT more now than I did 10 years ago. If I had known all this information back then, I would never have let my daughter eat tofu! My older daughter hasn't had a reaction to peanuts since she was 3 years old, mainly because we have avoided the allergens very carefully. Her younger sister accidently took a bite of a peanut butter cookie at age 5, and after that she also tested positive to the exact same things...peanuts, tree nuts, and legumes. The allergist tells us that we cannot rest on our laurels about this. Just because they have never had an anaphalyactic reaction so far doesn't mean it won't happen in the future. He tells us that it could happen at any time, for no apparent reason. In other words, if a food only made her thoat itch now, it might cause a serious reaction in the future with no warning. As a parent, you can understand how this terrifies me. So we try our best to keep them away from foods that could cause a reaction and possibly make things worse. We are also extremely fortunate that our girls do not react to allergens being "in the air." They do feel a bit queasy if they smell peanut butter strongly, but that is all. If they touch peanuts, they do not have a reaction. If they did, we could never travel anywhere. I know people like that -- they cannot take any airplane trips! We are crossing our fingers that our girls will grow out of their food allergies. My husband hates nuts, particularly peanuts, and had "mystery vomiting" when he was a child. He has never been tested, but we assume he HAD peanut allergy. But now he can eat some peanut and it doesn't affect him. He still hates the smell and wouldn't voluntarily have a peanut butter sandwich, for example. So we are hoping that our daughters follow suit. They say that 20% of people do outgrow it. I hope we're in that percentage!

I really hope that you guys can give me some assistance. In March 2008 (over Spring Break) I will be visiting Tokyo and Kyoto with my husband and our two daughters for 10 days. The problem: Our daughters (ages 11 and 14) are allergic to peanuts, tree nuts, and all legumes including soy protein products such as a miso and tofu. As you can imagine, this trip will be very challenging for us. Our daughters wear Medic Allert Bracelets and carry Epi-Pens. Why are we coming to Japan? My daugthers are in love with Japanese pop culture, Manga, Anime, and Japanese food. They BEGGED us to go there "next Spring break." We have travelled to many places around the world as a family, so I figured that with enough planning, it could be do-able. Nevertheless, I'm extremely nervous about this. Let me explain about legume allergy: a person is usually allergic to the PROTEIN that is present in the legume. In case you didn't know, peanuts are legumes. Soybeans and green peas are legumes. They are all part of the same botanical family to some extent. We live in the San Francisco Bay area and eat Japanese food all the time. My daughters CAN eat teriyaki sauce and soy sauce, because the protein is removed in the fermentation process. But the protein is still present in tofu, miso, soy flour, and of course soybeans themselves. For example, my daugthers eat sushi, chicken kaarge, katsu, teriyaki meats, tempura shrimp and some veggies, and plain rice. They cannot eat miso soup, salads sprinkled with peanuts, edamame, meats marinated in miso, or anything that blatantly contains the soyBEANS or tofu products. Or, of course, any type of nuts or nut oils. Noodles made from beans (mung beans, which are a legume) are also a problem. Fortunately, my girls are NOT allergic to sesame seeds or sesame oil! Because we are not Asian and do not know the Japanese language, we plan to have a series of cards made that explain, in Japanese, about their food allergies. Here's what I'm most concerned about: that waitresses or chefs will not fully understand the seriousness of the allergy. From what I've read, food allergies are not widely encountered or understood in Japan. I'm afraid that waitresses and/or chefs will just smile and nod to placate us...putting our kids in danger. Of course, we plan to only stick to familiar foods...no "food tasting adventures" for my kids. If need be, they could subsist on rice, sushi, fruits, and some packaged foods we'll bring. Or we could resort to McDonalds (for example) or Italian food. I'm not sure exactly what our food allergy card should say to communicate the seriousness of the issue to waitstaff or cooks. How can we communicate that this is a serious issue that is life-threatening to my kids, not just a silly food preference? If any of you have had experience with this issue, I would love to hear from you. I need your advice and suggestions. For example, someone on an Expat forum told me last month to avoid curry houses in Tokyo, because many Japanese curries are made with peanuts. This is the sort of thing I need to know. I am also a bit confused about noodles and noodle soups. Not sure which types of noodles are made from beans. Also not sure which types of soup bases/stocks would tend to be made with miso or contain tofu. My kids may wind up eating a lot of English/American or Italian food while in Japan. Are these other ethnic foods usually true to ingredients? For example, do they ever put soy in hamburgers (McDonalds, Johnny Rockets, etc) or does soy or nuts show up in American or Italian cuisine where you wouldn't expect it to? I want to thank Kristin, the forum moderator, for helping to approve my membership on this terrific forum. I appreciate any help or advice any of you can give me. Thank you, Lynn