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Celiac Disease In Japan

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I live in Japan and I strongly suspect I have celiac disease, but the doctors I have seen so far don't seem to have ever even heard of it, and one told me my problem is mental (i.e. stress). I suspect I have it because I have had frequent diarrhea for at least a few years, maybe more, and because the results of a health test in July show my cholesterol is too low and my ALP is too high, while the other liver function test results were normal (indicating a bone problem, not liver). Not sure how I could mentally raise my ALP... I had my blood tested again recently and got the same results. I originally thought the diarrhea was because Japanese meat is so greasy and so much of the food here is fried, so I became a vegetarian two years ago, but I still have diarrhea a few days a week on average (although I already lost my taste for meat, and don't think I can go back.) Anyway, my question is are there any people out there who have seen a doctor in Japan who is familiar with celiac disease, or at least knows what it is? Preferably in the Kansai (Kobe~Osaka especially) area. I know you can find anything in Tokyo, but Tokyo is far away. Or should I just assume I have it and go on a gluten free diet already? Maybe I can go back on gluten a while before my next trip back to the States and get tested then. I guess I would be even more sure I have it if a gluten free diet makes things better. But finding a doctor here who can help would be the best option. Because of my experience becoming a vegetarian, I think I've got living in Japan with a restricted diet down pretty well. Thanks in advance for any help!

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If you do a search for member Beth in Japan's posts or just Japan you may find some helpful posts. Beth was on not all that long ago asking some of the same questions and was pointed in the direction of a Doc. there that was helpful.

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Wow, I don't want to go through all of what she did! I tried to send her a message, but it gives me an error. I don't see the harm in trying out a gluten free diet, although I did read of people's difficulties in trying to go back on gluten for the purpose of testing. Ah, I'm not so sure about doctors here anyway. Except for in Kobe, the pediatricians we have taken our kids to all give antibiotics no matter what the diagnosis is, but Kobe is an hour away... My wife, who is Japanese, is going to help me contact hospitals and see if they can do the testing. But bethinjapan had to have the test sent through the mail to the States. Not sure if that is in my budget right now. Anyway, thank you for pointing me to her! I feel slightly less alone now!!^^

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The doc Beth went to is Takashi Imai <takashikun.imai@nifty.com> whos been a good friend for 20 years. He can only help with the things you read about it and really only knows about celiac since I got it 5 years ago. Still he can help a lot with connections.

Your wife can check with him ro check with Jikei daigaku where they used to do some testing. Imai sensei may know someone near your location as in the past we worked all over Japan on special cases -- now he has his own place in yokohama.

good luck

ken

Wow, I don't want to go through all of what she did! I tried to send her a message, but it gives me an error. I don't see the harm in trying out a gluten free diet, although I did read of people's difficulties in trying to go back on gluten for the purpose of testing. Ah, I'm not so sure about doctors here anyway. Except for in Kobe, the pediatricians we have taken our kids to all give antibiotics no matter what the diagnosis is, but Kobe is an hour away... My wife, who is Japanese, is going to help me contact hospitals and see if they can do the testing. But bethinjapan had to have the test sent through the mail to the States. Not sure if that is in my budget right now. Anyway, thank you for pointing me to her! I feel slightly less alone now!!^^

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Thanks for the information! We will contact Imai-sensei soon. Hopefully he has some connections in in the Kansai area.

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It turns out that the test can't be done in Japan. Blood must be sent to the US to be tested, and so it's not covered by insurance, and it comes out to a tune of 100,000yen ($1,000US)!! That is not an option. I'll give going off gluten a shot. Wish me luck!!

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And we complain about the doc's here! Do wish you lots of luck with the diet. Keep in touch here for lots of great info, and support. This site has been a God-send to me.

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Thanks for the support! I will try going on a gluten-free diet and see if that helps. If it's successful, I'm thinking of compiling information from my experience to help other people who run into the same problem in Japan, or people who know they have celiac disease and are planning on going to Japan. It's amazing how much of the food in my house right now contains gluten. This is going to take some work!

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Just dpont eat any onigiri from Family Mart or 7-11 etc. Most of them have wheat starch.

Why they add wheat to a ball of rice is beyond me. You also have to be careful of the nori,

Some used in some places, at least in Tokyo> is processed with soysauce.

on my profile here is a link to some pages and pictures of items I found in Japan over the past 5 years. I've had place in Tokyo for 30 years.

good luck

ken

Thanks for the support! I will try going on a gluten-free diet and see if that helps. If it's successful, I'm thinking of compiling information from my experience to help other people who run into the same problem in Japan, or people who know they have celiac disease and are planning on going to Japan. It's amazing how much of the food in my house right now contains gluten. This is going to take some work!

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Just dpont eat any onigiri from Family Mart or 7-11 etc. Most of them have wheat starch.

Why they add wheat to a ball of rice is beyond me. You also have to be careful of the nori,

Some used in some places, at least in Tokyo> is processed with soysauce.

Arigatou for the heads up! I actually stopped eating conbini onigiri long before I even heard of celiac disease because they made me feel ill. But soy sauce is troublesome... I know it's possible to buy soy sauce made without wheat, but so many foods here contain soy sauce which isn't likely the gluten-free variety.

I've read a lot about "dedicated facilities" and I'm wondering how much of an issue that is in Japan. There's probably no such thing as a dedicated facility for gluten free here, but should I worry about it? I'm guessing miso made without barley and soy sauce made without wheat could very likely be made in factories that make the kinds with those. I know there are people here with wheat allergy though. Maybe I'm thinking too much about this... Thanks for any sense you can make of this.

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I buy a lot of miso to take home but youhave make sure its made with kome koji and not mugi.

actually the bets place to buy stuff is form the JA coop stores in the country side.

Im sure they must have them near you. All over chiba -- the health food store in yokohama eki has a ton of stuff as does SOGo there and tobu in Ikebukuro.

yyou can also get awa kibi and hie millets

i did find a fair niumber of soy shoyus and not all wheat -- mostly the commercial yamasa and kikkoman that have the junk.

Hacho miso from nagoya was really good to obut two types had wheat most was ok

just have to read hte labels as they are pretty accutrate

taoke care

Ken

from a bad connection in the jungles outisde of mumbai

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Hey, thanks again! For some reason the nearest JA always seems to be sold out of everything but red peppers or turnips. Kobe has lots of health food stores, and I'm going to make a trip to stock up this weekend. We're pretty good at label reading. We tried making brown rice bread, and although it tasted good, it wasn't bread. So we'll try stocking up on some other grains. I heard sorghum (takakibi, i believe) is the best. Is it possible to buy xanthum gum in Japan, or is there a more readily available way to make faux-gluteny bread?

You take care in those jungles! :)

Chris

From a generally dependable connection in the rusting semi-inaka of Hyogo

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Sokensha is another source. http://www.allergie.jp/products/default.php?language=ja I have ordered from them but needed a native Japanese reader/speaker to assist me.

Foreign Buyer's club is another resource.

Ken's right, make sure the miso is made with kome-koji. The starter culture is grown on a grain before it is used in the miso. I have taken to making my own with a purchased starter culture that is grown on brown rice.

I recently learned that glucose syrup can be made from barley, esp. in traditional sweets.

Don't forget about Mugi-cha, not something you want to drink.

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MIssys mom is right about the mugi-cha - i forgot ones and started drinking tea in some shop and that is it for 3 days. just never even occured to me then.

i tend to make sobagaki instead of breads so i never thought of looking for xanthium gum.

sorghum is good in japan -- usually just see it as sorghum in katakana.

take care

Hey, thanks again! For some reason the nearest JA always seems to be sold out of everything but red peppers or turnips. Kobe has lots of health food stores, and I'm going to make a trip to stock up this weekend. We're pretty good at label reading. We tried making brown rice bread, and although it tasted good, it wasn't bread. So we'll try stocking up on some other grains. I heard sorghum (takakibi, i believe) is the best. Is it possible to buy xanthum gum in Japan, or is there a more readily available way to make faux-gluteny bread?

You take care in those jungles! :)

Chris

From a generally dependable connection in the rusting semi-inaka of Hyogo

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MIssys mom is right about the mugi-cha - i forgot ones and started drinking tea in some shop and that is it for 3 days. just never even occured to me then.

i tend to make sobagaki instead of breads so i never thought of looking for xanthium gum.

sorghum is good in japan -- usually just see it as sorghum in katakana.

take care

Cool! We just looked up sobagaki and we'll give it a try. I used to drink mugi-cha a lot, but I'm getting used to just plain water now. I'm a bit too overwhelmed to try eating out right now, but I'll have to keep that in mind if and when I do. My wife can taste my food and drink for me! Too bad for her I'm not a king... haha.

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Sokensha is another source. http://www.allergie.jp/products/default.php?language=ja I have ordered from them but needed a native Japanese reader/speaker to assist me.

Foreign Buyer's club is another resource.

Ken's right, make sure the miso is made with kome-koji. The starter culture is grown on a grain before it is used in the miso. I have taken to making my own with a purchased starter culture that is grown on brown rice.

I recently learned that glucose syrup can be made from barley, esp. in traditional sweets.

Don't forget about Mugi-cha, not something you want to drink.

Do you know how glucose sugar is labeled in Japanese? Other than the katakana for glucose, the dictionary also gives "budou-tou" which would lead one to think it's from grapes, but is that necessarily true? We often eat wagashi, and I was happy I wouldn't have to give up my mochi, but maybe I still have to be careful. Maybe the anko is sweetened with barley glucose? I always wanted to make my own miso, so maybe this can be my motivation! Thanks for the info!!

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There's a You-Tube link in this thread that may help with the glucose. http://www.celiac.com/gluten-free/index.ph...mp;#entry542661

Making the miso really isn't hard. It just takes a little time and alot of patience. We prepared it starting one night and finishing it the next morning and let it ferment 3 months. The way the group of us does it here, you end up with alot and it lasts a long time so I really don't mind the effort. We order the starter culture from South River Miso company. Some of their own pre-made misos may be started on barley, if I remember right but we order the brown rice that has been innoculated with the bacteria(kome-koji). I've experimented this summer with making some pickled garlic and cucumbers using it.

That reminds me, I was always told to avoid nukazuke(rice bran pickles) because it contained something not gluten-free-maybe a bit of shoyu?

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i always did like sobagaki, also use sobako as a flour for pizza crust, lqvosh, crackers, whatever I feel like.

even used it to make raviolli once -- mixed with a little quinoa flour.

just stick to ocha and forget mugi & youll do fine.. nothing would keep me from going out to eat in japan.

my friend you has a chanko nabe place in tokyo makes the dashi with ship and gobo and no shoyu

its fantastic.

anwyay oim sure youll find some places and if you tell them shoyu and starh and komugi allergy that gets them to be careful

good luck

Cool! We just looked up sobagaki and we'll give it a try. I used to drink mugi-cha a lot, but I'm getting used to just plain water now. I'm a bit too overwhelmed to try eating out right now, but I'll have to keep that in mind if and when I do. My wife can taste my food and drink for me! Too bad for her I'm not a king... haha.

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For eating out, we chose a shabu shabu place that used just konbu for the dashi. I brought my own shoyu and yuzu. Those in our party who wanted noodles and non-gluten-free ingredients had a separate pot for their stuff and mine was dedicated to the gluten-free stuff-meat and veg. We were careful to use separate serving utensils/chopsticks for each pot.

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