Celiac In Japan

[Keemra]

Hello. I am new to this forum, and am looking for answers. I am an American who has been living in Japan for 30+ years. I have had digestive problems since childhood, and first suspected celiac when visiting with another American friend who had been diagnosed with it about 15 years ago. Since then I have eliminated all breads, pasta, cakes cookies, etc. from my diet, and my symptoms disappeared. However, recently they have been coming back. I basically am in the same state I was 16 years ago, so I suspect I am eating things that are toxic for me without knowing it. I eat soy sauce every day, barley tea, sweet rice, foods with modified food starch. Do all these things have gluten? I really would like to find a nutritionist or doctor who can advise me. It seems the disease is non existant here, so doctors don't seem to know anything about it. Is there a list somewhere of foods that have gluten? Does anyone know a doctor in Tokyo who is familiar with celiac disease?

Thanks for any help.

Keemra

[Riayn]

Hello. I am new to this forum, and am looking for answers. I am an American who has been living in Japan for 30+ years. I have had digestive problems since childhood, and first suspected celiac when visiting with another American friend who had been diagnosed with it about 15 years ago. Since then I have eliminated all breads, pasta, cakes cookies, etc. from my diet, and my symptoms disappeared. However, recently they have been coming back. I basically am in the same state I was 16 years ago, so I suspect I am eating things that are toxic for me without knowing it. I eat soy sauce every day, barley tea, sweet rice, foods with modified food starch. Do all these things have gluten? I really would like to find a nutritionist or doctor who can advise me. It seems the disease is non existant here, so doctors don't seem to know anything about it. Is there a list somewhere of foods that have gluten? Does anyone know a doctor in Tokyo who is familiar with celiac disease?

Thanks for any help.

Keemra

I can't help you with a doctor in Tokyo as I am in Australia, however I can help answer your questions about foods. Soy sauce and barley tea both contain gluten. Soy sauce is made using wheat, so you will need to find a gluten-free version of it if you can't do without it. I am not sure about sweet rice as I don't know what is in it, other than rice. It is best to check the labels of everything you are eating. If it contains wheat, rye, barley, oats or malt then it is best not to eat it.

However before going gluten-free you may want to get tested for celiacs first.

Best of luck!

[Keemra]

I can't help you with a doctor in Tokyo as I am in Australia, however I can help answer your questions about foods. Soy sauce and barley tea both contain gluten. Soy sauce is made using wheat, so you will need to find a gluten-free version of it if you can't do without it. I am not sure about sweet rice as I don't know what is in it, other than rice. It is best to check the labels of everything you are eating. If it contains wheat, rye, barley, oats or malt then it is best not to eat it.

However before going gluten-free you may want to get tested for celiacs first.

Best of luck!

Thanks for your response. I really do need to find someone here who can help me with specific foods. For example, sweet rice (mochi) is just rice, but it is a special variety of rice that is very sticky. It is sometimes called glutenous rice. It is used for making Japanese sweets, New Years food, rice crackers and many many other things. Man oh man, if I cut out soy sauce and mochi rice in addition to all the other things I can't eat, I won't have anything left! We don't have all the gluten free breads and cakes that are available elsewhere. *sigh*

I guess feeling better is worth it. I just now read about dermititus herpetiformis. I have that, and have been seeking a remedy for it for 20 years and nothing helps. I had no idea it was related to celiac disease!

[happygirl]

We are happy you have found the board!

Yes, most soy sauces have wheat in them. In America, there are some gluten free options, but I can't offer advice for overseas, unfortunately. One brand here that has a gluten free version (not all of their products are) is San-J. They have a regular and low sodium one.

Avoid anything with barley---barley contains gluten, like wheat.

In America, modified food starch has to say if it is from wheat. Overseas, I don't know what the labeling laws are. However, the #1 rule to stay gluten free is if you don't now 110% what is in it (ingredients) and how it was prepared (to minimize cross contamination...i.e., if someone is preparing your food, and they used a utensil that touched something with gluten, and then put it back in yours, then it is not safe), you should not eat it.

There are some good lists of ingredients on www.celiac.com, the parent site to this forum. Be advised that food labeling laws on here often apply either to the US or Canada.

https://www.celiac.com/st_main.html?p_catid=12 check out these links, they should at least help some!

Definitely try to find a nutrionist/dietician....Doctors, at least in America, know very little about the actual foods. Many dieticians don't either, as we have learned.

Check out the book listed in my signature. Since you don't have a knowledgable doctor, it can help supplement your knowledge of what gluten is, how it affects our system, foods, nutrion, DH, related disorders, etc.

Hope this helps---let us know what else we can do!

Laura

[Keemra]

We are happy you have found the board!

Yes, most soy sauces have wheat in them. In America, there are some gluten free options, but I can't offer advice for overseas, unfortunately. One brand here that has a gluten free version (not all of their products are) is San-J. They have a regular and low sodium one.

Avoid anything with barley---barley contains gluten, like wheat.

In America, modified food starch has to say if it is from wheat. Overseas, I don't know what the labeling laws are. However, the #1 rule to stay gluten free is if you don't now 110% what is in it (ingredients) and how it was prepared (to minimize cross contamination...i.e., if someone is preparing your food, and they used a utensil that touched something with gluten, and then put it back in yours, then it is not safe), you should not eat it.

There are some good lists of ingredients on www.celiac.com, the parent site to this forum. Be advised that food labeling laws on here often apply either to the US or Canada.

https://www.celiac.com/st_main.html?p_catid=12 check out these links, they should at least help some!

Definitely try to find a nutrionist/dietician....Doctors, at least in America, know very little about the actual foods. Many dieticians don't either, as we have learned.

Check out the book listed in my signature. Since you don't have a knowledgable doctor, it can help supplement your knowledge of what gluten is, how it affects our system, foods, nutrion, DH, related disorders, etc.

Hope this helps---let us know what else we can do!

Laura

Thanks, Laura for your help. Labeling laws here in Japan are not as strict as they are in the US. There are a few companies that volunarily state what kind of modified food starch they have used, but most do not. Most just say "dembun" which means starch. As you say, if I don't know, it is best to avoid it. As far as I know, there are only 3 companies that make soy sauce here, and all 3 use wheat. I will have to do more research. I was hoping that all the processing that goes into making it would remove the gluten. It seemed to me that beer and barley tea and other liquids also would be free of the offending gluten, but I guess that was just wishful thinking on my part. I still have a lot to learn. Thanks for the book recomendation.

Joanna

[aikiducky]

I'm afraid wishful thinking doesn't work with celiac. If you're not 100% sure about something, don't eat it.

Glutinous rice, btw, is just rice, the name sounds dangerous but glutinous in this case just means it's sticky. Gluten is the protein in wheat that makes wheat bread etc. stick together, glutinous rice is sticky in a similar way but it's safe to eat.

Pauliina

[Keemra]

I'm afraid wishful thinking doesn't work with celiac. If you're not 100% sure about something, don't eat it.

Glutinous rice, btw, is just rice, the name sounds dangerous but glutinous in this case just means it's sticky. Gluten is the protein in wheat that makes wheat bread etc. stick together, glutinous rice is sticky in a similar way but it's safe to eat.

Pauliina

Thanks Pauliina, for the info about glutinous rice. That is very good news for me. I am so glad I found this board and that you all are so helpful.

Joanna

[happygirl]

Keemra,

We are all so happy you have found it too! I just wish that we could help more. Can you order non-perishable foods (off the internet) from American companies and have them shipped to you?

Laura

[Lisa]

Celiac is not very prevalent in the Asian world as I am sure that your products do not relay that fact.

Perhaps you can find some "Wheat Free Tamari", which to me is the good stuff.

Good luck

[super-sally888]

hi,

i am an Australian in the Philippines. Am finally finding what was wrong. Avoiding gluten is easier in Asia where rice is the staple. I stick to basic foods. Can't usually find gluten free substitutes for standard products here. Gluten free soy is not so commonly available. No beer! Wine is a good substitute. This is indeed a learning process. Am about to leave the office now. But will write some more to you later. This is a great site!

Sally

[super-sally888]

Hi Again.

Actually there is a lot we can eat. Just we have to be aware of what ingredients are. For me, the following are ok:-

eggs, meat, nuts, all veges, all fruits - fresh and dried, rice (I get various types - white, brown, red, black, wild - particularly like a mixture of red, black and brown. I cook a big pot and leave it in the fridge and just add toppings. Soups - home-made or broth type. Steamed buns made from rice flour. Wine, most spirits. Soft drinks. Rice noodles, tea, coffee, meringue, chocolate, dairy seems to be ok for me (not ok for some people)...

This diet is way better than the problem it is preventing. It is just a matter of changing mindset. I am actually quite happy to eat this way (and don't mind not having replacements for standard wheat products) and don't even have to make a big deal of it (though I am still managing to get ccntaminated - mainly from eating things without knowing their ingredients or not being strict enough. Stupid me ate cheese cake yesterday and thought that just removing the crust would be ok.... it wasn't.... major lbm today (Here in philippines we don't say Diarrhoea we say Loose Bowel Movement - or LBM - it sounds kind of more dignified...)

Mind you was having acupuncture today and the doctor (my very good friend / swimming coach / team-mate (we do triathlon)) was discussing my D with his assistant/student dr. in earshot of the other patients.... felt like crawling under the bed - good thing I was hidden by curtains and had a long session......

Anyway, this is a learning curve to deal with this..(I am only 3 weeks in)... self diagnosed, but diet is making a huge difference...

Take care. You can do this.

Sally

[Keemra]

Celiac is not very prevalent in the Asian world as I am sure that your products do not relay that fact.

Perhaps you can find some "Wheat Free Tamari", which to me is the good stuff.

Good luck

Yes, you are right, Celiac is not very prevalent here. I went to a doctor yesterday who SPECIALIZES in stomach and intestinal diseases. When I told the receptionist that I was looking for a doctor who could help me with Celicac disease, she said, I've never hear of it. She went to the back and called the doctor, and he came out and said, "Celiac disease, Hmmmm, I think I remember reading about that once in a medical journal, but I have never actually seen anyone who has it. I am afraid I can't help you." At least he was honest. This is a rice culture, which has both pluses and minuses for me.

I am glad for the internet, and I will continue looking. I will look for wheat free tamari too.

Joanna

[Kayaking Mom]

Hello. I am new to this forum, and am looking for answers. I am an American who has been living in Japan for 30+ years. I have had digestive problems since childhood, and first suspected celiac when visiting with another American friend who had been diagnosed with it about 15 years ago. Since then I have eliminated all breads, pasta, cakes cookies, etc. from my diet, and my symptoms disappeared. However, recently they have been coming back. I basically am in the same state I was 16 years ago, so I suspect I am eating things that are toxic for me without knowing it. I eat soy sauce every day, barley tea, sweet rice, foods with modified food starch. Do all these things have gluten? I really would like to find a nutritionist or doctor who can advise me. It seems the disease is non existant here, so doctors don't seem to know anything about it. Is there a list somewhere of foods that have gluten? Does anyone know a doctor in Tokyo who is familiar with celiac disease?

Thanks for any help.

Keemra

Soy sauce has wheat and must be avoided. SAN-J makes a wheat free soy sauce. Their parent company is in Japan. Look for San-Jirushi in Kuwana Mie, Japan. You might find them online there. Or visit San-J.com in USA and ask if the product is distributed in Japan. You can probably find many dishes made there with rice noodles. Best of luck!!

[missy'smom]

Please update us as you find out how to live gluten-free in Japan. I will try to do the same. I am an American married to a Japanese man. We are currently living in the U.S. We used to eat alot of Japanese food, at times almost all Japanese. I cooked it at home alot. But since starting on a gluten free diet I've eliminated it for now. One cuisine is enough of a challenge. But little by little we'd like to bring it back into our lives, (esp. my husband) We are trying to research products, but slowly. We're planning to travel to Japan again in May to visit his family. First time for me going as a Celiac. For now I don't trust dashI, one it's in a powder form and two chicken and beef broths can contain gluten . It's one of the products that I want to research. As you know it's in so many dishes and seems to almost always be the same brand so knowledge of exactly what's in it could be very valuable. We are going to try to make it the old fashioned way with konbu and katsuo.

LoL

[Keemra]

Hi Again.

Actually there is a lot we can eat. Just we have to be aware of what ingredients are. For me, the following are ok:-

eggs, meat, nuts, all veges, all fruits - fresh and dried, rice (I get various types - white, brown, red, black, wild - particularly like a mixture of red, black and brown. I cook a big pot and leave it in the fridge and just add toppings. Soups - home-made or broth type. Steamed buns made from rice flour. Wine, most spirits. Soft drinks. Rice noodles, tea, coffee, meringue, chocolate, dairy seems to be ok for me (not ok for some people)...

This diet is way better than the problem it is preventing. It is just a matter of changing mindset. I am actually quite happy to eat this way (and don't mind not having replacements for standard wheat products) and don't even have to make a big deal of it (though I am still managing to get ccntaminated - mainly from eating things without knowing their ingredients or not being strict enough. Stupid me ate cheese cake yesterday and thought that just removing the crust would be ok.... it wasn't.... major lbm today (Here in philippines we don't say Diarrhoea we say Loose Bowel Movement - or LBM - it sounds kind of more dignified...)

Mind you was having acupuncture today and the doctor (my very good friend / swimming coach / team-mate (we do triathlon)) was discussing my D with his assistant/student dr. in earshot of the other patients.... felt like crawling under the bed - good thing I was hidden by curtains and had a long session......

Anyway, this is a learning curve to deal with this..(I am only 3 weeks in)... self diagnosed, but diet is making a huge difference...

Take care. You can do this.

Sally

Hi Sally,

Thanks for sharing your experiences with me. Maybe my experiences will help someone here too, so here goes. I actually don't get lbm from wheat. I get it when I eat oats, but wheat gives me the other problem. I get constipated, and the worse problem is severe methane gas that gets trapped and burns behind the blockage. It is very painful. When the gas comes out it is toxic waste grade killer gas. I mean, everyone clears out of the room, especially me because I am so embarassed. I also have skin problems, muscle pain, and decalcification of my bones. I have been self diagnosed for the past 16 years, and have been able to eliminate the gas and constipation symptoms by staying away from obvious wheat products. But I am still having trouble with the other stuff. I didn't realize until just recently that they are symptoms of celiac disease too.

So now I realize that I have not been truly wheat free. I have to start looking for "hidden wheat". One of those "hidden wheat" products is soy sauce. It is an ingredient in almost every dish here in Japan. I can't get substitutes for bread here, and I am ok with that. I just eat rice. I avoid western type deserts, and just eat Japanese rice/bean based deserts instead. It is fine. But I am feeling challenged by the soy sauce thing. My dinner menu for this evening includes 4 Japanese dishes plus rice. Three of the four dishes are traditionally made with soy sauce. How can I make them without soy sauce? Will my family be willing to eat them? But yes, somehow I will learn to deal with it. Maybe I will be able to find some wheat free soy sauce somewhere.

I guess the biggest challenge for me here is really my family. I don't have so much trouble accepting the celiac thing, but my Japanese hubby and kids have much more trouble. It is unfair for me to force them to be wheat free too, so I don't, but it is a lot of work for me to cook my food completely separate from theirs. How do other people with families deal with that?

Joanna

[Keemra]

Please update us as you find out how to live gluten-free in Japan. I will try to do the same. I am an American married to a Japanese man. We are currently living in the U.S. We used to eat alot of Japanese food, at times almost all Japanese. I cooked it at home alot. But since starting on a gluten free diet I've eliminated it for now. One cuisine is enough of a challenge. But little by little we'd like to bring it back into our lives, (esp. my husband) We are trying to research products, but slowly. We're planning to travel to Japan again in May to visit his family. First time for me going as a Celiac. For now I don't trust dashI, one it's in a powder form and two chicken and beef broths can contain gluten . It's one of the products that I want to research. As you know it's in so many dishes and seems to almost always be the same brand so knowledge of exactly what's in it could be very valuable. We are going to try to make it the old fashioned way with konbu and katsuo.

LoL

What a delight to find you here! I also am an American married to a Japanese man. 95% of our food is fixed Japanese style, and until just recently I have been just fine with that. (See my post to Sally) It is actually easier for me to avoid bread here - I just eat rice. I have never worried about dashi before, but I just went to check my label. I buy a kind that is made without monosodium glutimate, and it has potato starch in it, but no wheat. I sometimes make it from scratch too. It isn't that difficult, and really tastses a lot better. I am now on the lookout for non-wheat soy sauce. I will let you know how that goes. I am getting a lot of good help from this forum!

[missy'smom]

Thank you for the info. about the dashi. That gives me alot of hope. Can I ask what brand it is that you use?

[missy'smom]

Here I am again. I was thinking things over and couldn't sleep and had a thought. When we lived in LA my husband's primary care physician was a Gastroenterologist(Hubby's father is a Dr. but different specialty and these two Dr.'s graduated from same medical school in JPN) Ohara sensei is his name and he is the one who first mentioned Celiac Disease to me. I was too out of it at the time(from Gluten ) and didn't follow up with him. Maybe he could help you out. He is a very kind man. The info below is up to date within the past two years to the best of my knowledge.

Jun-Ichi Ohara M.D., P.H.D. Former research Associate Proffesor of Medicine, Univ. of Colorado and other credentials

4950 Barranca Pkwy. #206, Irvine, CA 920604

36555 Lomita Blvd, #111, Torrance, CA 90505

420 E. 3rd. St., #903, Los Angeles, CA 90013-1652

(310) 791-3838 business card says 24 hr. day and night 7 days a week

E:mail: GastroDoc1@home.com

If you find that any of this info is not up to date or have trouble contacting him let me know and we'll get you in touch with him one way or another.

[Keemra]

Here I am again. I was thinking things over and couldn't sleep and had a thought. When we lived in LA my husband's primary care physician was a Gastroenterologist(Hubby's father is a Dr. but different specialty and these two Dr.'s graduated from same medical school in JPN) Ohara sensei is his name and he is the one who first mentioned Celiac to me. I was too out of it at the time(from Gluten ) and didn't follow up with him. Maybe he could help you out. He is a very kind man. You can mention Tanaka-san if you want. The info below is up to date within the past two years to the best of my knowledge.

Jun-Ichi Ohara M.D., P.H.D. Former research Associate Proffesor of Medicine, Univ. of Colorado and other credentials

4950 Barranca Pkwy. #206, Irvine, CA 920604

36555 Lomita Blvd, #111, Torrance, CA 90505

420 E. 3rd. St., #903, Los Angeles, CA 90013-1652

(310) 791-3838 business card says 24 hr. day and night 7 days a week

E:mail: GastroDoc1@home.com

If you find that any of this info is not up to date or have trouble contacting him let me know and we'll get tou in tougch with him one way or another.

Thank you so much for the contact information for Ohara Sensei. My husband has actulally found an internet website for a Celiac disease reasearch center in Nagano. He has been trying for about 2 months to contact someone there with no luck. All e-mails and telephone calls go unanswered. Maybe Ohara Sensei will have a contact here (preferably Tokyo) who will be contactable.

BTW I was able to find a company on the internet that makes non-wheat tamari soy sauce. We ordered 2 bottles and it should arrive today or tomorrow.

The company that makes the dashi powder I mentioned is called Riken. I also use an all natural tea bag type dashi that isn't instant, but almost. You have to boil the tea bag for 3 minutes and your dashi is done. Its flavor is better, and it is all natural. The only ingredients are katsuobushi and kombu. It is made by Tsuyama and is called Tenzen dashi.

Thanks,

Joanna

[loraleena]

I too am in a relationship with a Japanese man. Unfortuneatly we have been avoiding most asian food since I found out. I have noticed a lot of his Japanese snacks he likes have gluten in them or at least questionable ingredients. His good friend who is also Japanese, has been trying to modify recipes for me. Neither of them ever realized how much wheat/gluten is in their products until now.

[Keemra]

I too am in a relationship with a Japanese man. Unfortuneatly we have been avoiding most asian food since I found out. I have noticed a lot of his Japanese snacks he likes have gluten in them or at least questionable ingredients. His good friend who is also Japanese, has been trying to modify recipes for me. Neither of them ever realized how much wheat/gluten is in their products until now.

Yes, as I mentioned before, there is soy sauce in everything. I have been gluten free here in Japan with the exception of soy sauce for over 15 years, and it hasn't really been that difficult. But the soy sauce is a real big one! For all practical purposes it totally eliminates eating out. My wheat free soy sauce still has not arrived. I will see how it goes after that. One thing that is wonderful here is there certainly is an abundance of fresh fruits and vegetables - many more than in most parts of the US, and they don't come from the market with wheat in them. But you are right about the snacks. I have been reading labels like crazy recently looking for soy sauce, and even innocent looking things are contaminated.

Joanna

[Keemra]

Thanks everyone for all your help. I have been able to find an online store that sells gluten free soy sauce. It doesn't help much when I go out to eat, but it sure helps my home cooking. I will be doing most of the New Years cooking at home this year. In the past, we have always just purchased it. It will be a fun new challenge for me.

Joanna