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Celiac In Japan And New Symptoms


Japonpoko

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Japonpoko Newbie

Hello everyone

 

First post here, even though I have read quite a few ones.

There are mainly two things I would like to ask. The most important question is at the end of the message, so if you do not feel like reading the full story, please just go down ^^.

 

To begin with, and to briefly introduce myself, I am French (sorry for the English mistakes by the way !) and have been living in Japan for a few months.

I've spent more than 2 years with quite hard symptoms : permanent sore throat, feet always feeling cold, catching cold every 2 weeks (and they would last a week), constantly exhausted, AND 7 years of unexplained tendinitis...

Didn't know what to do, and no one knew, until a sport doctor told me about celiac. Did the test blood test without really believing it, but I did have a gluten intolerance. Not the strongest possible, but quite a nice one.

Started the gluten free diet 4 months ago, and as a result... I felt much better after just a month (except the tendinitis). Even though I didn't stop completely gluten (I am still eating what we call gyudon, which use little soy sauce = wheat). Really felt like a miracle.

 

1. Anyway, I felt great until I made a few mistakes 3 weeks ago, eating some curry (had no choice, and didn't know it was that bad), some choco cake I thought gluten free, and some meat with a shaddy sauce (no choice either, business with clients).

Light symptoms started to come but it's only a week later it got really bad, like before... With new symptoms : tension headache. Which lead me to my first question : can symptoms evolve like that? Like, I mean, getting suddenly some new symptoms I never had before ?

 

 

2. Then, my second question. When I first ate gluten 3 weeks ago, it took 2 days about to get a few symptoms back (not all though). The headache lasted 2 weeks, and 2 days after I ate the choco cake, I caught a cold which lasted a week. Well, weather was quite bad 2 days before I caught the cold, so it made sense, but it started around 18:00, while I had been at my office the whole day, with absolutely no problem. So I thought it might be the choco cake. I mean, you catch a cold when the weather is bad and you're outside, not 2 days later when you're inside.

First, does that sound possible?

 

Then, here is my problem. My cold got better after a week. Great. Felt good during 3 days (except some light headache and sore throat). Great again. And now I feel bad again. Even though I am positive I haven't eaten anything I didn't eat when I was feeling great 2 months ago.

 

So, 2 options here :

A/ I've started eating cheese, could that be the reason? I wasn't lactose intolerant 4 months ago according to my blood test, but could have it changed that fast? (or might the blood test be unreliable regarding lactose?) Don't eat that much of cheese though, and I've been eating some during the last 4 months, even when I was feeling better.

 

B/ Regardless of what I ate during the last few days, I did eat some gluten a few weeks ago, so I will need quite some time to stop getting symptoms --> is it realistic?

 

Let me ask this another way : does eating gluten once after a 2 months diet means that some symptoms might come back, disappear, then come back again during a few weeks even though you have been very careful since then?

 

I can't help thinking gluten might have nothing to do with my illness, and that I should look for another reason again... So I need some help !

 

PS : if that can help, I'm 25.

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cyclinglady Grand Master

Yes, it is the gluten! Symptoms can wax and wane. They can change too.

Read this link to our newbie thread:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

You have to treat gluten as if it were poison. No cheating ever!!

Oh, you get cold from a virus. Not the weather!

Take care! Hope you feel better soon. Feel free to ask questions. We are here to help!

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cyclinglady Grand Master

Oh, you can download restaurant cards in Japanese. These might help you at the market too! Talk to your friends and get their advice on traditional foods. Your favorite restaurant might work with you too (let you bring your own soy sauce). We eat at a local Chinese restaurant and one of their employees has a sister with celiac disease. We buy a bottle of gluten-free soy sauce and leave it there. We have become good friends with them.

I am sure others will chime in soon to offer advice.

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kenlove Rising Star

If your in Japan you must be  eating a lot of junk food from family  mart where even the rice  has  wheat  added to it. 

Cheese too.  YOu have to learn  the  kanji for wheat - Komugi or sometimes  merikenko (american powder).

I'm not sure how prolific you are  nihongo but there are some tricks-  find a juwari soba place -- not  regular soba -- it has to be 100%  juwari and just the soba yu -- no sauce.    shoyu is  wheat-- ponzu is wheat ( most of the time) 

 

All the packaged curry is made with  wheat -- Inly if you go to the indian places like moti mahal in akasaka mitsuke  can you get authentic. shinjuku mianami guchi has a good srilankan place.  MAny in ikebukuro too -- depends where you are located. 

 

it sounds like  some of your trouble is not knowing where the gluten is.  yes after  2 weeks of diet its a problem.  After  9 years for me its still a problem if i let my guard down.  Sometimes the ingredients change in products and you have to read it each time you buy something.  YOu have to learn  how to explain it in  Japanese too -- then  they will go out of their way to help you have a good experience.  good luck

ken

 

Hello everyone

 

First post here, even though I have read quite a few ones.

There are mainly two things I would like to ask. The most important question is at the end of the message, so if you do not feel like reading the full story, please just go down ^^.

 

To begin with, and to briefly introduce myself, I am French (sorry for the English mistakes by the way !) and have been living in Japan for a few months.

I've spent more than 2 years with quite hard symptoms : permanent sore throat, feet always feeling cold, catching cold every 2 weeks (and they would last a week), constantly exhausted, AND 7 years of unexplained tendinitis...

Didn't know what to do, and no one knew, until a sport doctor told me about celiac. Did the test blood test without really believing it, but I did have a gluten intolerance. Not the strongest possible, but quite a nice one.

Started the gluten free diet 4 months ago, and as a result... I felt much better after just a month (except the tendinitis). Even though I didn't stop completely gluten (I am still eating what we call gyudon, which use little soy sauce = wheat). Really felt like a miracle.

 

1. Anyway, I felt great until I made a few mistakes 3 weeks ago, eating some curry (had no choice, and didn't know it was that bad), some choco cake I thought gluten free, and some meat with a shaddy sauce (no choice either, business with clients).

Light symptoms started to come but it's only a week later it got really bad, like before... With new symptoms : tension headache. Which lead me to my first question : can symptoms evolve like that? Like, I mean, getting suddenly some new symptoms I never had before ?

 

 

2. Then, my second question. When I first ate gluten 3 weeks ago, it took 2 days about to get a few symptoms back (not all though). The headache lasted 2 weeks, and 2 days after I ate the choco cake, I caught a cold which lasted a week. Well, weather was quite bad 2 days before I caught the cold, so it made sense, but it started around 18:00, while I had been at my office the whole day, with absolutely no problem. So I thought it might be the choco cake. I mean, you catch a cold when the weather is bad and you're outside, not 2 days later when you're inside.

First, does that sound possible?

 

Then, here is my problem. My cold got better after a week. Great. Felt good during 3 days (except some light headache and sore throat). Great again. And now I feel bad again. Even though I am positive I haven't eaten anything I didn't eat when I was feeling great 2 months ago.

 

So, 2 options here :

A/ I've started eating cheese, could that be the reason? I wasn't lactose intolerant 4 months ago according to my blood test, but could have it changed that fast? (or might the blood test be unreliable regarding lactose?) Don't eat that much of cheese though, and I've been eating some during the last 4 months, even when I was feeling better.

 

B/ Regardless of what I ate during the last few days, I did eat some gluten a few weeks ago, so I will need quite some time to stop getting symptoms --> is it realistic?

 

Let me ask this another way : does eating gluten once after a 2 months diet means that some symptoms might come back, disappear, then come back again during a few weeks even though you have been very careful since then?

 

I can't help thinking gluten might have nothing to do with my illness, and that I should look for another reason again... So I need some help !

 

PS : if that can help, I'm 25.

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Fenrir Community Regular

I don't know much about Japan but I know that Celiac is much less common there so not as much care in labeling for such might be a problem.

As stated above, you cannot have "just a little bit" of gluten if you have Celiac Disease. No more soy sauce or eating things you are not sure about.

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nvsmom Community Regular

There are very basic restaurant cards available for free on the web.

Here is the French version:

Open Original Shared Link

Japanese:

Open Original Shared Link

Japanese including soy sauce explanation:

Open Original Shared Link

 

My reactions to gluten tend to grow when I am repeatedly exposed. I feel worse as time goes on and it can take many weeks to recover.  For me, part of this disease was feeling flike I had a flu so I would not be surprised if what you experienced was a gluten set back... Especially so early into your recovery.

 

You'll need to be more strictly gluten-free in order to get well.  If there are no food choices, you will need to skip the food.  :(  You may need to risk offending some people, or standing out, in order to keep yourself safe. :(

 

I hope you feel better soon.

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Pauliewog Contributor

Gluten is EVERYWHERE in Japan. It is extremely hard to avoid especially if you are eating out. I have lived in Japan 20+ years and the last 3 have been gluten free. I never eat out. There is only one sushi place that I go to and that is with my own gluten-free soy sauce.

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1desperateladysaved Proficient

I don't know how it is in Japan, I expect they mostly haven't heard about celiac, but here you can just explain you have food allergies and then are not required to eat it.  I try not to take anyone by surprise with it, but let them know I won't be able to eat with them.  Sometimes I have just had to let others think little of me, but I can't eat gluten.  Now the people that matter most understand and some others are beginning to understand.

 

My symptoms seemed to get more visible as I recovered.  They did change also.  I had mostly brain fog and fatigue, but now experience GI reactions.  My personal take on this is that my body had become so overwhelmed that it could not react more strongly than it was.  As my over-all health improved, I knew it when I made a food mistake.

 

Dee

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Japonpoko Newbie

Thank you all for your answers ! It really helped me a lot !

I'll be busy the whole week-end and thus won't be able to reply before monday I think, but I really appreciated a lot your messages, and wanted to say it before being late !

Thanks again !

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kenlove Rising Star

I take it your not in Tokyo  now, They have got pretty savey in a lot of places. There are a few doc who specialize in diagnosing celiac now too (Yokohama). After  30 years with my office there, 10 as celiac, i have a much worse time finding things  in HAwaii.

 

 

Gluten is EVERYWHERE in Japan. It is extremely hard to avoid especially if you are eating out. I have lived in Japan 20+ years and the last 3 have been gluten free. I never eat out. There is only one sushi place that I go to and that is with my own gluten-free soy sauce.

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Japonpoko Newbie

Once again, thank you all for your answers.

Knowing that some of you were in the same situation or had the same symptoms as me really helps. Gives me much more motivation.

About doing the diet more strictly, I guess you are all right. Thing is, I had almost never cooked while I was living in France, and I've started working (and thus actually living) in Japan just 2 months ago, so starting immediately with a 100% gluten free diet would have been quite difficult.

This + some negligence, I must admit. I was feeling pretty well even while eating some gyudon, so I thought I would be okay with some curry as well (it was this or not eating at all). But I wasn't.

Anyway, I'll be more careful from now, and I'll stop eating at restaurant unless I'm 100% sure it's safe.

 

 

 

If your in Japan you must be  eating a lot of junk food from family  mart where even the rice  has  wheat  added to it. 

Cheese too.  YOu have to learn  the  kanji for wheat - Komugi or sometimes  merikenko (american powder).

I'm not sure how prolific you are  nihongo but there are some tricks-  find a juwari soba place -- not  regular soba -- it has to be 100%  juwari and just the soba yu -- no sauce.    shoyu is  wheat-- ponzu is wheat ( most of the time) 

 

All the packaged curry is made with  wheat -- Inly if you go to the indian places like moti mahal in akasaka mitsuke  can you get authentic. shinjuku mianami guchi has a good srilankan place.  MAny in ikebukuro too -- depends where you are located. 

 

ken

 

I did use to eat a lot of combini food, everyday to tell the truth, when I was still a student. And I was indeed ill all the time.

However, I did do some researchs, and I completely stopped eating combini food, as well as food with "may contain wheat" written on it.

By the way, forgot to say it, but I'm fluent in Japanese, enough to do some translation work for my company. So reading kanji and explaining my problem isn't an issue. The issue is more about finding a place where I can eat outside.

 

When I am inside (or when I bring my own lunch box), I usually eat rice, chicken, pork (no sausage), shrimps, mushrooms, honey, eggs, with some fruits (banana, orange, tomatoes). Not everything at the same time of course. I use my own wheat-free shoyu. I buy everything at the supermarket. I used to eat cheese as well, but I was afraid cheese bought at supermarket would be bad, so I stopped. Is there anything in this list which sound shaddy?

 

Maybe should I say that according to my French doctor (we only did a blood analysis), I have a very light intolerance to banana, honey and eggs. It was a kind of "point system", with something like light intolerance from 6 to 12, medium from 13 to 20, serious from 21 to 30, and then very serious for 31+.

I am around 7-8 for banana honey and eggs, and 27 for gluten.

Do you think I should stop eating of those as well? I would have a really hard time eating rice without honey nor eggs.

 

By the way, you are talking about sauce in Japan : how about soup used for Nabe? ("nabe no moto")

Some of them use soy, and wheat isn't in the allergen list, but I still don't know if it's safe.

 

 

 

 

You'll need to be more strictly gluten-free in order to get well.  If there are no food choices, you will need to skip the food.   :(  You may need to risk offending some people, or standing out, in order to keep yourself safe. :(

 

Skipping food will be really difficult for me, as I tend to lose weight really fast, and get hungry even faster. Had to skip one recently (well, just eating fruits and chocolate bars), and I really had a hard time.

Now, problem is when I have to go to a restaurant for business. Like, I will probably have to take care of a foreigner client in 2 weeks, which means bringing it to a restaurant. Hope I can find a few safe ones.

 

I take it your not in Tokyo  now, They have got pretty savey in a lot of places. There are a few doc who specialize in diagnosing celiac now too (Yokohama). After  30 years with my office there, 10 as celiac, i have a much worse time finding things  in HAwaii.

 

I'm really interested in what you said there ! Could you give me more information about those doctors? Having a list of safe restaurants would as well help a lot. Living in Tokyo, not so far from Shinjuku by the way (Mitaka).

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kenlove Rising Star

HI Takeshi Steve Imai <hba02515@nifty.com> is the doc in yokohama who knows about celiac. just ell him we talked.  I have a friend in Mitaka who has a fancy kaiseki ryori place, Suijenin, Gene Watanabe <gene4219@wacky-1.com> or his brother butch.

 

Matoi sushi you should be able to find in Chiba Daimon is very small but Honpo san is very aware. usually has my gluten-free shoyu or braggs aminos around.  There is a health food store in the Yokohama eki behind sogo, 3rd floor i think . cant remember the name but they had a lot of gluten-free items from  awa, kibi and hiya & the Sogo has some sorghum products too. 

 

INteresting about the point system,  makes sense when i think about it. begin Vegan i'm sometimes stuck with  eating only rice at lunch meetings.  I jsut can sick without being laid up for a couple of days so I dont  do it. sometimes you hve to be careful of prepared rice -- just  read the back of the onigiri lables -- that and cheaper places will use korean nori which is sometimes processed with  shoyu.  Got a  free gluten-free dinner over that one once when i bet a chef about it. Too bad  that place is long gone in gokokuji.

i'll be there from nov 19th or so.

ken

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kenlove Rising Star

sorry not chiba -- shiba daimon is matoi

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Japonpoko Newbie

Thanks a lot for the information. I'll probably try to contact this doctor, as I really need to receive some advices from a pro, and would as well need a new check-up.

I'm quite worried about what I can and can't eat (as I said, I don't know what a "light intolerance" truly means, and if I should refrain from eating such food), so I'm sure he will be of great help.

Some people already talked about this, but Japanese really don't care about allergy and all.

I mean, there was this nabe soup I wanted to buy, with an allergen list written on it. The only allergen was the lactose one. I thought it was safe, but I tried to call the company making it. I was then told that there was actually a risk of cross-contamination.

 

Is there any place near Tokyo where we can buy things without being afraid of such traps? Internet would be fine as well. Not only talking about cakes, pasta and such (already use iHerb for them), but also about sauces I will really need if I don't want to eat everyday the same thing. Like Shiro-dashi, ponzu,tsuyu, marudori gara soup...

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kenlove Rising Star

maybe we can meet after teh 20th  when i get there form  india.Not sure of my schedule yet though.  If you can find the place behind sogo that would be good  but actually you can get juwari soba in the local groceries.  Is there a LIfe supermarket near you?

 the key is to find some bases to use, for example yuzu kosho  and ume paste  have never had  problems  from what Ive seen and i use them all the time.  sometimes mixed with  wheat free shoyu or braggs aminos which i usually bring and leave at friends restaurants.   different shios are good for sauces too,  macha shio and  water works well  or with ume or yuzu shio.

 

youhave to be a little bit careful of misos and make sure your getting one made with only kome koji otherwise its for barley.

 

getting those other grains  are good too. The awa, kibi and hiya.  they are harder to find but i usually get them in komagome which is not that far from  mitaka.  COntact gene or butch  about the  juwari soba and explain to them you have the same thing as me. Its my real name BTW.  born and raised in mitaka They both speak perfect  english after school in Calif  where gene's wife is from.

 

they just dont have the smae laws but companies are really changing and becoming much more aware since there is such an increase in japan in celiac --  form 05 to 07  it went form  20 diagnosed to  over  27,000 and many more, especially kids, with wheat problems.  The big dept. stores usually have  shoyu made with  soy and/or sorghum  which is really good. while i can get sick walking through a bakery section of the store - -these products never did me in.   Good luck

 

Thanks a lot for the information. I'll probably try to contact this doctor, as I really need to receive some advices from a pro, and would as well need a new check-up.

I'm quite worried about what I can and can't eat (as I said, I don't know what a "light intolerance" truly means, and if I should refrain from eating such food), so I'm sure he will be of great help.

Some people already talked about this, but Japanese really don't care about allergy and all.

I mean, there was this nabe soup I wanted to buy, with an allergen list written on it. The only allergen was the lactose one. I thought it was safe, but I tried to call the company making it. I was then told that there was actually a risk of cross-contamination.

 

Is there any place near Tokyo where we can buy things without being afraid of such traps? Internet would be fine as well. Not only talking about cakes, pasta and such (already use iHerb for them), but also about sauces I will really need if I don't want to eat everyday the same thing. Like Shiro-dashi, ponzu,tsuyu, marudori gara soup...

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  • 5 weeks later...
Japonpoko Newbie

Hi !

Sorry for replying this late, I've been sick for 3 weeks, and I still am.

Trying to stay positive though. I guess I'll try to meet that doctor you were talking about in Yokohama, as I really need to know if I can eat eggs, dairy and honey. Might be the reason why even after 2 months I don't get better, even though I just needed 1 month at first to start feeling better.

 

It'd be great to meet you, but being sick I don't know when I can take some time. I've just kept cancelling all of my plans recently.

How long will you be staying here by the way?

 

EDIT : Just tried to send a mail to Imai Steve Takeshi, but the mail was rejected (wrong address). Know anything about this?

Any other way to get in touch with him?

If you know in which hospital he works, I think I'll contact them directly.

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chocominties Rookie

Open Original Shared Link

National Azabu Market

I used to shop here a little bit. They were good for items like gluten free pasta or the occasional cookie. You had to be careful because some of the versions of products weren't the "safe" kind you'd get in America or Europe, but were made for Japan.

Fbcusa.com - Foreign Buyer's Club

They allow you to buy some gluten-free items wholesale. The shipping is pretty reasonable. I bought a bread maker and then would order bread mix from FBC.

Good luck et bonne chance! Gluten is why I left Japan after living there several years. Not eating and dealing with crap from doctors who thought it was all in my head got to be too hard. That was a few years ago, so I hoped things might have changed! I guess not really.

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kenlove Rising Star

he has  his own clinic in yokohama. Steve Imai <hba02515@nifty.com> is all i have but  talk to him more on facebook now.  

Open Original Shared Link

hope your feeling better soon, good luck

Hi !

Sorry for replying this late, I've been sick for 3 weeks, and I still am.

Trying to stay positive though. I guess I'll try to meet that doctor you were talking about in Yokohama, as I really need to know if I can eat eggs, dairy and honey. Might be the reason why even after 2 months I don't get better, even though I just needed 1 month at first to start feeling better.

 

It'd be great to meet you, but being sick I don't know when I can take some time. I've just kept cancelling all of my plans recently.

How long will you be staying here by the way?

 

EDIT : Just tried to send a mail to Imai Steve Takeshi, but the mail was rejected (wrong address). Know anything about this?

Any other way to get in touch with him?

If you know in which hospital he works, I think I'll contact them directly.

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Japonpoko Newbie

he has  his own clinic in yokohama. Steve Imai <hba02515@nifty.com> is all i have but  talk to him more on facebook now.  

Open Original Shared Link

hope your feeling better soon, good luck

 

Thanks a lot ! I'll try to send him a message via Facebook, even though it's not the best place to do so ^^

 

Open Original Shared Link

Good luck et bonne chance! Gluten is why I left Japan after living there several years. Not eating and dealing with crap from doctors who thought it was all in my head got to be too hard. That was a few years ago, so I hoped things might have changed! I guess not really.

 

Thank you, et merci ! ^^

I quite understand your feeling, staying here with that kind of restriction is really hard. But I just can't think about leaving Japan, so I think I'll deal with all the negative points, including the awful level of doctors here (It's like they think everything you have is ALWAYS a flu).

Don't know if things have changed regarding food, but I'm eating mostly rice, meat, eggs, mushrooms and shrimps, so as long as I cook everything myself, I'm fine. Just hope there's no cross contamination with raw meat.

However, things have certainly changed regarding the way Japanese people see this problem.

Maybe I'm just lucky about it, but all of my collegues at work are extremely comprehensive, they understand why I get sick easily (still go to work though...), and whenever they bring some food from some place (omiyage), they're like "Hey Romain. Got some omiyage but... Guess you can't eat any?".

 

Anyway, I guess I can deal with it. I mean, I can deal with it if it gets better ! ^^

 

By the way, is my case anything special?

Feeling better very quickly (in around 2 weeks) after starting the gluten free diet, and then taking more than 2 months to recover after being glutened again?

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kenlove Rising Star

it takes time to  adjust and heal no matter where you are- I was only diagnosed 9 years ago but have been in and out of japan since 82 or so. Have seen plenty of changes. I'm also  Vegan for the past  5 years so being vegan and  celiac does  limit the options until you start to think about all the fresh veggies there are.  almost every izakaya  ive been in will steam a bunch for me -- make some potatoes salad or anything else.  I dont need  shoyu to  survive here. shichi mi and yuzo kosho for  spice and flavors are  enough.  some of the flavored  salts are  ok too.  IT may just be a matter of  finding places and things you can get used to while here.

 

Also you can send a  private message to  Dr Imai on facebook- not sure how often  he checks. Talked to  his wife last week but have not heard from him.

good luck

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Japonpoko Newbie

it takes time to  adjust and heal no matter where you are- I was only diagnosed 9 years ago but have been in and out of japan since 82 or so. Have seen plenty of changes. I'm also  Vegan for the past  5 years so being vegan and  celiac does  limit the options until you start to think about all the fresh veggies there are.  almost every izakaya  ive been in will steam a bunch for me -- make some potatoes salad or anything else.  I dont need  shoyu to  survive here. shichi mi and yuzo kosho for  spice and flavors are  enough.  some of the flavored  salts are  ok too.  IT may just be a matter of  finding places and things you can get used to while here.

 

Also you can send a  private message to  Dr Imai on facebook- not sure how often  he checks. Talked to  his wife last week but have not heard from him.

good luck

 

Thanks again for all the detail !

Being vegan AND intolerant to gluten must be real hard...

I tried to send a MP to Dr Imai, but still no answer. It was sent to his "other mailbox". Hope he will notice (most people don't even know there is a secondary box on Facebook).

 

So, now, I have an important question about using alcohol while cooking, in Japan.

May recipes use alcool, and I'm planning to have a sukiyaki party in 2 or 3 days.

So, I was thinking about buying some Mirin, but I don't know if it's really safe.

Any information about this one?

I found this, which is supposed to have no additional flavour :

Open Original Shared Link

 

Still, I wonder if the rice koji can't be glutened. Having to avoid everything which is not 100% safe in Japan almost seems impossible...

 

 

On a side note, what should I think about a company telling me its nabe soup doesn't use anything containing wheat, but that its rice miso is made in a factory making wheat miso, and that a cross contamination could be possible.

Should I keep avoiding this kind of food as well? Getting pretty hard, really.

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Pauliewog Contributor

You can "make" your own mirin by mixing some sake and sugar. I've had homemade miso from a friend who made sure the kogi was from rice and I have been ok. Still makes me nervous.

 

Yes, it is hard!

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kenlove Rising Star

trouble sending a reply so i hope you get this -- third time to  try!

ive not been able to  reach   imai sensei either and weve been friends  25 years.   must be  out of the country or very very busy

 

have seen good and  questionable mirin -- you need to get to one of hte health food stores  like the one behind  yokohama  eki.

  i bring  braggs and gluten free shoyu with me everywhere here. didnt haev a bottle for one of my hangouts tonight but they  found   sorghum shoyu in the basement of the old  ginza  seibu.  Some of these  depato's have it in the basement   and have  health food sections too.  Have seem daizu shoyu and  GHF  mirin at  seibu ikebukuri.

i have never had a problem with any shiro miso with  kome koji. all the places wil check for you. if not go  someplace  else becsaue they just dont want to deal with gaijin.

 

ive not had a problem with cross contamination with miso.   mugi miso is kept separate and im sure the odds would be astronomical to get contaminated,   just haev to make  sure  there is no mugi.

 

mayeb we can get together  in the spring when im  back with hopefully more time.

 

good luck

 

oh, find a couple of  good miso's and use those for everything -- get  juwari soba  which     is fantastic. take care

 

 

Thanks again for all the detail !

Being vegan AND intolerant to gluten must be real hard...

I tried to send a MP to Dr Imai, but still no answer. It was sent to his "other mailbox". Hope he will notice (most people don't even know there is a secondary box on Facebook).

 

So, now, I have an important question about using alcohol while cooking, in Japan.

May recipes use alcool, and I'm planning to have a sukiyaki party in 2 or 3 days.

So, I was thinking about buying some Mirin, but I don't know if it's really safe.

Any information about this one?

I found this, which is supposed to have no additional flavour :

Open Original Shared Link

 

Still, I wonder if the rice koji can't be glutened. Having to avoid everything which is not 100% safe in Japan almost seems impossible...

 

 

On a side note, what should I think about a company telling me its nabe soup doesn't use anything containing wheat, but that its rice miso is made in a factory making wheat miso, and that a cross contamination could be possible.

Should I keep avoiding this kind of food as well? Getting pretty hard, really.

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