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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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Hi all,

I'm currently in Japan, which is a food nightmare for celiacs. I've never eaten so much white rice in my life. I've been subsisting off of Soy Joy bars, Lara bars from home, yogurt, fruit, and foods like sushi, which I now learn might be responsible for the low-level illness I've had since I've been here (seaweed might be soaked in soy sauce, rice might be mixed with wheat starch).

After I'd been here a couple of nights we went out looking for something that wasn't bread/pastry, noodles/pasta, breaded/fried, Japanese curry, or covered in soy sauce (which ruled out about 90-95% of food). I tried to order sushi in a restaurant and showed my dining card, which I'd bought specifically for this trip and had been too shy to use at that point- amazing what intense hunger will do- to avoid being served mugicha (barley tea, a popular summer drink). The waitress freaked, got the manager and another server who spoke excellent English, and they proceeded to interrogate me until deciding that they didn't want to risk the trouble and escorted me through the crowded dining room to the exit, telling me where I might find a restaurant more suitable. I was shaking from hunger, nearly in tears in front of all those people. I felt like a pariah and I've been afraid to use the card since (and yes, even with taking care to only eat things that appear safe and don't have the kanji for wheat/barley or gluten on the package, I've not felt well the entire time).

Has this happened to anyone else in Asia or elsewhere? I have a whole pack of cards in different languages and am now wondering if I wasted my money if restaurants will take one look and refuse to help.

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I'm so sorry you're having a terrible time on your trip! I know that here in the States I avoid Japanese restaurants like the plague. I can't imagine how awful it must be to try to find something to eat amid all that gluten. When I read your subject line, I assumed you were talking about the States. I've been shown the door before--at a Chevy's restaurant, no less. I was told that I might fare better at another restaurant--I nearly cried.

Have you found any markets that sell fruit or nuts? I know....not the most satisfying foods. I hope your trip will be short in duration....

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I haven't been ushered out, but I have been told in more than one restaurant in the US that they couldn't come up with anything safe for me (when I know darn well they could have). If you can possibly shop and cook, you might be better off with fruits and vegetables. Maybe canned tuna, eggs, nuts. It must be really hard when you don't know the language well enough. But, I would not be afraid to show the card again. It seems like the response you got last time was about the worst that could happen, so knowing that, your next experience would either be the same or more likely better. I'd say you found some ignorance in that restaurant and I wouldn't expect to find that reaction everywhere. Keep trying, because I think your chances of getting something to eat will be better if you keep trying than if you give up. Good luck, and I'll bet you can find advice on eating in Japan somewhere on this forum, maybe in the travel section.

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Yes, do a search here for Japan. Several of us who have traveled there have posted advice and experiences.

Every culture has a different way of approaching things. My Japanese friends here-some good people and good friends get together over meals sometimes and don't include me because of my restrictions. They do't want to cause me trouble or make me feel bad so they just don't invite me. They mean well, but there's a lot that they don't understand.

And you're right Japan and Japanese food is not very gluten-free friendly. When I first went gluten-free I thought OK this is easy, we'll just switch over to Japanese food. I was already cooking up to 50% of our meals Japanese because my DH is Japanese. I quickly realized that it was not that easy. It's taken us a few years to get back a stock of certain basics of Japanese cuisine in our home. We don't eat it out.

You may already know this but in a pinch you can get plain yogurt, rice, fruit, maybe a lettuce salad(skip the dressing), plain boiled edamame? in a convenience store or supermarket. I'm trying to think of what kind of protein would be safe...

Ajitsuke nori is the one that you want to avoid. It means flavored. The plain sushi nori is fine.

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What an awful experience! I feel so badly for you.

To answer your question about the cards, I have used them in Spain and in Portugal with very good results. I have been nervous about traveling to Asia and your post confirms my fears!

If anyone is reading this post in Minnesota, Obento Ya on Como Av in Minneapolis is fabulous with gluten free. They substitute safe things in the bento boxes without me even having to mention it and they always bring me gluten-free soy sauce. It took me a couple visits on my own but now I even bring my daugher that has Celiac disease and we have never had a problem.

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i lived in japan for years- but that was before i got to the point where i was having "D" a lot, and YEARS before i ever even heard about Celiac. if one only had a wheat or carb intolerance- it can be a very great place to be healthy- BUT- for Celiac- ya, it's virtually impossible to find a sauce that doesnt have wheat in it :angry: i wish they could make all their sauces with wheat free alternatives- it would taste just fine. i have been MOURNING the loss of UNAGI & tempura :(

anyways- try to look for plain fish- with no sauces. and sushi nori should be fine, and sushi rice is soaked in rice vinegar- i THINK sushi should be fine as long as you're not having any sauces or marinades- BUT if you get really sick from CC- then maybe u have to be careful- cause maybe they dont wash their hands all the way?

at the 7'11s & grocery stores- they have lots of premade sushi rolls & rice triangles that should be wheat free...

maybe a Shabu Shabu restaurant would be fine- as long as you dont use any sauces- cause there- u just boil your food. ?? OH- also there's a lot of american chains there like Outback.

and try to eat lots of veggies over there (steamed, raw, no sauces)- if u eat too much rice- you're gonna have a C situation

Gambatane :)

ps- maybe u should see if you can order some gluten-free soy sauce over the internet. i just ordered gluten-free soy sauce packets- so i can take them with me the next time for sushi

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Better to be ushered out than fed something that was not gluten free. I wish more places would be honest that they can't serve something gluten free. I think it was an honor to have this happen.

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cass,

you don't have to go without tempura. I posted a recipe here once upon a time. Do a search in the baking section. Dh made some just this week with just rice flour, egg and water and it was great!

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cass,

you don't have to go without tempura. I posted a recipe here once upon a time. Do a search in the baking section. Dh made some just this week with just rice flour, egg and water and it was great!

THANKU!!!!!

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The supermarkets where I live in Australia sell a gluten free tempura batter in the regular asian section of the store. It could be worth checking out your local supermarket.

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Better to be ushered out than fed something that was not gluten free. I wish more places would be honest that they can't serve something gluten free. I think it was an honor to have this happen.

I guess that's one way of looking at it, but when you're 6000+ miles from home, don't speak the language, it's almost 9 PM, and you've have already spent over an hour walking around town looking for a restaurant that appears to serve something you can eat (i.e. a simple sushi plate), it's really difficult to be told to find somewhere else when all you wanted was something to drink with your sushi other than barley tea.

I'm doing a bit better now. We stayed in a hostel for two nights in Kyoto and were able to buy fresh meat and veggies to cook our own dinners (the meats and produce are really beautiful and fresh here, so that was a treat). We're in Tokyo now and have friends here who can run interference with the restaurant staff, but even our friends (one of whom is native Japanese) are having trouble helping me find anything I can eat.

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I have traveled all over the world and will offer the best advice I can.

This situation is not the restaurants doing. It is all on you. As a celiac you need to have a few bars in your purse to carry you along so you don't get into a desperate situation looking for food. The restaurant did the right thing in telling you they could not accommodate you. In order to travel safely you need to be able to judge by the restaurants reaction whether you can safely eat there, not try to force restaurants to accommodate you. There is nothing I like better than having a restaurant say delightedly, "Of course we can do a gluten free or celiac meal". If there is too much discussion or they cannot answer my preparation questions then often I will find another restaurant. I have to go with my gut often when they say they can but don't seem to know enough to actually pull it off.

The cards are a wonderful aid when your tired or don't know the language. I got great use out of mine. Japan is a tough country for gluten free. I find at western hotels that cater to travelers I can get things like hard boiled eggs, fruit, veggies and steamed rice.

And yes, I've been told many times a restaurant can't do a gluten free meal. I smile, thank them for telling me and go on to the next candidate.

Best Michelle

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Sorry this happened to you! This happened to me in Germany -- which, given the penchant there for meat and potatoes, is a bit surprising (especially as I kept trying to say just plain meat would be fine), but I think it was because they didn't know what gluten was and thought it was just too much bother to go through.

I've found that it helps to show them the card before you sit down. And I echo the advice of trying to find a self-catering hotel/apartment at least part of the time -- even if you can find gluten-free food, it sometimes just gets tiring when you're in a foreign city!

-Char

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And I echo the advice of trying to find a self-catering hotel/apartment at least part of the time -- even if you can find gluten-free food, it sometimes just gets tiring when you're in a foreign city!

Yes, I agree. After cooking for ourselves in Kyoto, we agreed that 1) if we ever return to Japan (which I would love to do as I feel I would need much longer to do justice to Tokyo) we will only stay in places with kitchens, pack a few utensils, and cook fresh food from the markets, and 2) whenever possible, in future we will book rooms that will allow us to cook, since that was so low-stress and actually fun. I always do carry Larabars with me and was supplementing those with Soy Joy bars, but at the end of a long day, it's nice to be able to eat something warm that has more than 200 calories. Kobe was by far the most difficult as we had no kitchen access and nothing besides convenience stores near us.

I wonder if I should invest in a small hotplate and pack that in my checked luggage next time. Hmm.

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New to the forum, all the info is so helpful. I just got diagnosed and although it can be a challenge I don't mind all the reading and research. It's a small price to pay for a chance at a healthy life after a lifetime of illness. Can anyone please explain what all the abbreviations mean, say D, DH, CC etc. and what is the card everyone is referring to when eating out? Thanks

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New to the forum, all the info is so helpful. I just got diagnosed and although it can be a challenge I don't mind all the reading and research. It's a small price to pay for a chance at a healthy life after a lifetime of illness. Can anyone please explain what all the abbreviations mean, say D, DH, CC etc. and what is the card everyone is referring to when eating out? Thanks

I'm also new to the forum, but to the best of my understanding here are the answers:

Travel Cards

DH = dear husband

D = diarrhea

CC = cross contamination

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Depending on the context, DH is also dermatitis herpetiformis :rolleyes:

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I thought that japanese soy was called Tamari which is gluten free. Maybe you could ask them if they are using tamari or buy your own bottle of tamari or gluten free soy and take it with you. It must be very frustrating for you with the language barrier and lack of awareness.

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Before reading the whole post I found I wasn't surprised... till I found out you were in Japan. Seems that peeps in the U.S. are so danged litigious that being glutened at a restaurant could end up in a lawsuit... I wasn't surprised to hear a restaurant ushered you out rather than attempt to accommodate you! I'm a little surprised to hear that it was in a country outside the U.S. So sorry this is happening to you!

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I've been to Japan a few times. While you can have things happen like the OP, I would say overall eating out is a better experience than in the US. In Japan, they pride themselves on work and good service, and when you show your card, they will either ask you to leave because they can't handle the request, like the OP, or they will do everything in their power to assure that you're food is gluten free. In the US, you are usually just "yessed" by a high school waiter who really doesn't care one way or the other.

Always carry your own soy sauce. I always bring the San-J wheat free soy sauce. If you can read Japanese, you can also find wheat-free soy sauce at most grocery stores.

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