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Leuconostoc

In Okinawa for a week - day 1 nightmare

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I'm in Okinawa for a week to visit family and for research-related reasons, and despite research on eating gluten-free in Okinawa, things have been unexpected and going wrong from the start. I've been here for 24 hours now and have already ingested at least 3 items with gluten

(I just got over what doctor was pretty sure was refractory celiac and was recovering well even after a big scare with eating barley after mix-up with a specifically prepared meal for an academic banquet). Now after the past 24h appear to be developing severe neurological symptoms. lymph nodes around neck are palpable and neck is extremely painful. Arms are weak and semi-numb on left side, clumsiness, arms and feet are burning in areas, balance issues, myoclonic twitching, visual impairment on left side (have confirmed optic neuritis), brain fog, EXTREME thirst (drinking 3-4 L water and still thirsty), and fibromyalgia -like symptoms. I took prednisone that my doctor gave me but doesn't seem to help much at all. I have contacted my doctor in states but don't think she can do anything until I am back and with lack of understanding for celiac here I don't think going to hospital is a good idea (not to mention have no idea costs with US health insurance),

Stomach is growling but I currently am nauseated, feeling extreme fullness and have absolutely no appetite but will have to force myself to eat something in AM as i have to somehow make a professional research presentation. Is there ANYTHING i can do to lessen symptoms? Has anyone been in Okinawa and able to eat gluten free? -if so, can you please suggest what to eat from what store - I can read hiragana and katakana and a few kanji but am not fluent in Japanese. I have a small fridge but no stove in this hotel. I am in Naha and can't travel far, especially more so with symptoms. I can't eat fruit (fructose malabsorption), asked relative to boil eggs (she bought store pre-boiled eggs which I am scared to eat despite the lack of the kanji for "mugi" on the label), when I am having neurological symptoms any carbohydrate exacerbates symptoms, and I'm concerned that something like nuts or beans may worsen inflammation and symptoms if there is recent GI damage

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Ugg I feel you there huge japan fan here, normally I would suggest nordicware, microwave cooking ware, and buying raw fish, egg,s and veggies then cooking in the steamer, grill plate, and omelette maker for these kinds of trips or bringing meal bars. I have carb issues also and eat ketogenic, while they might not taste that good julian bakery make protein bars that are dairy, gluten free and ketogenic diet approved with low carbs, they also make a grain free granola mix , breads etc.

Hmm are you good with Japanese? I can get you some romanized phrases for medical terms, food, and gluten related questions so you can try to talk them over with people. I have not been up there in years but I have a old friend up there who used to be a navy medic and lives near there who I would have help me out with issues and finding stuff. Wish I could offer more help, this last minute kind of thing there is not much  I can do.

while "Mugi" Refers to barely gluten is referred to pronounced as "guruten" my japanese is a little odd and rotational. I will sometimes use a polite term of oneself as watashi other times and inopportune use other terms, SOO teaching someone phrases is a bit of a issue for me. I can try to words it as cute and polite as I can think with terms funny how using third person and detaching oneself in speech is considered polite.

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I can converse at a basic level but relatives who are Okinawan and live here were supposed to help me (they do not speak English). I also have a printout in kana and kanji explaining my dietary restrictions. Relatives intentions are 100% good but clearly do not understand cross contamination and that even if they cannot see the "mugi" it will still make me sick despite repeated explanations. I also need to be very careful not to offend relatives hospitality as this is a very sensitive time (I am here for research & also due to a recent death in family). So I am on my own. If I knew it was going to be this nightmarish eating gluten free I would have packed a week worth of canned/packaged gluten free food and shipped in a checked luggage bag. I will try to see if I can go to relatives house and boil eggs myself but that probably won't be until Thursday at the earliest. Packaged foods are scaring me at this point as I don't know what is safe to eat - i know that just because the word "mugi" isn't in the label doesn't mean it necessarily is gluten free.

Edit: Ennis_TX, totally understand not much can be done, but appreciate the response at the very least. I am hoping someone will come along who knows what prepackaged products I can buy at store and safely eat. To be specific, I say "mugi" referring to ID of the kanji on labels for suffix to wheat, barley, rye and oats, as well as prefix for flour (mugiko). I also have Fu, GURUTEN, shoyu, etc, on the allergy printout. 

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watashi wa " refering to I'am or oneself is, "no arerugii" allergic to  basically, "guruten" is gluten other things to avoid obviously would be soy sauce "syouyu" OH Another useful term "toire wa dokodesuka" Where is the toilet -_-

If you need to ask for someone that speaks english "kokoniwa eigo wo hanaseruhito go imasuka" 

"byouin" means hospital and "byouin wa doko desuak" is asking where the hospital is

"watashi wa kibun ga yokuarimasen" I'm not feeling well

.......Perhaps I should find your a app or something for this lol be back this afternoon after some research. Might if there is anything else I can learn or find out for you. >.< amazon overnight shipping work? Might be worth getting that cookware, bars, or a canister of MRM Veggie Meal replacement shake for a low carb shake.

 

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My Japanese speaking is a bit more advanced than that (though still basic) so I think you can hold back on the research for phrases or apps. Again, appreciate it. Will look into Amazon overnight- never even crossed my mind. Thank you!

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12 minutes ago, Ennis_TX said:

watashi wa " refering to I'am or oneself is, "no arerugii" allergic to  basically, "guruten" is gluten other things to avoid obviously would be soy sauce "syouyu" OH Another useful term "toire wa dokodesuka" Where is the toilet -_-

If you need to ask for someone that speaks english "kokoniwa eigo wo hanaseruhito go imasuka" 

"byouin" means hospital and "byouin wa doko desuak" is asking where the hospital is

"watashi wa kibun ga yokuarimasen" I'm not feeling well

.......Perhaps I should find your a app or something for this lol be back this afternoon after some research. Might if there is anything else I can learn or find out for you. >.< amazon overnight shipping work? Might be worth getting that cookware, bars, or a canister of MRM Veggie Meal replacement shake for a low carb shake.

 

just realized I wasn't directly responding to you - response above and below this post I'm quoting

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I am so sorry that you are sick.  Many some fruit might be okay?  Bananas?  You could live off those for a week.  Add in some fresh raw veggies?  Any local stores that carry American products?  I found one importer of American food, but they are on vacation (family run).  ☹️ Amazon might work.  Maybe the pre-cooked eggs are fine.  Read this:

http://www.legalnomads.com/gluten-free/japan/

We travel always with enough food to live when overseas (like a cereal bar a day).  We might lose a lot of weight, but we will live.  That is not going to help you now, but maybe it will help someone else.  

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18 hours ago, cyclinglady said:

I am so sorry that you are sick.  Many some fruit might be okay?  Bananas?  You could live off those for a week.  Add in some fresh raw veggies?  Any local stores that carry American products?  I found one importer of American food, but they are on vacation (family run).  ☹️ Amazon might work.  Maybe the pre-cooked eggs are fine.  Read this:

http://www.legalnomads.com/gluten-free/japan/

We travel always with enough food to live when overseas (like a cereal bar a day).  We might lose a lot of weight, but we will live.  That is not going to help you now, but maybe it will help someone else.  

THANK YOU for the link. Read through the whole thing.

Didn't eat for >24 hours and started to feel A LOT better. Still sick, but nowhere near yesterday sick.  I decided to just talk/explain in detail how sick the food made me to one of my relatives who was very understanding. She is going to explain to other relatives that I won't be able to eat the food they offer for health reasons. She took me to a farmer's market and I now have a bunch of veggies, tofu, unflavored seaweed and unflavored dried chirimen. She's going to bake potatoes for me tomorrow and boiled me a dozen fresh eggs. I didn't eat the pre-cooked store bought eggs because they had an odor that smelled like flavoring and I didn't want to take a gamble. Finally, I can eat something. Hopefully day 1 nightmare was it. :D

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2 hours ago, Leuconostoc said:

THANK YOU for the link. Read through the whole thing.

Didn't eat for >24 hours and started to feel A LOT better. Still sick, but nowhere near yesterday sick.  I decided to just talk/explain in detail how sick the food made me to one of my relatives who was very understanding. She is going to explain to other relatives that I won't be able to eat the food they offer for health reasons. She took me to a farmer's market and I now have a bunch of veggies, tofu, unflavored seaweed and unflavored dried chirimen. She's going to bake potatoes for me tomorrow and boiled me a dozen fresh eggs. I didn't eat the pre-cooked store bought eggs because they had an odor that smelled like flavoring and I didn't want to take a gamble. Finally, I can eat something. Hopefully day 1 nightmare was it. :D

Had a flashback of going on vacation once without enough food, I ended up walking the 5mile round trip to a grocery store to get cartons of egg whites, fresh veggies, and almond milk. I overstock everything now when I go places due to this lol.

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I lived in Okinawa for 4 years prior to diagnosis.  My son however tried to go gluten free during that time.  His school had no idea what I was trying to say and could do nothing for him.  Everyone eats school lunch. Period.  It was difficult.  If I went back I would eat the percooked hard boiled eggs from Lawson's or your nearest convenient store.  You may feel more comfortable rinsing them before eating them.  I would also eat the plain rice onigri.  If you know the contents of the mayo you could eat mayo/fish onigri. Stay away from the ones that use soy sauce.  Maybe look at tins of fish while you are there to see if they contain soy sauce.

The other idea is to connect you with someone on a base.  They have great American grocery stores with lots of options and American doctors and hospital.  They deal with American insurance companies.  I looked into that for my father in law who came to visit while terminal.  He had postal insurance and was 100% covered in Okinawa on base.  Do you have military connections there?   Camp Foster or Kadena grocery stores are the big ones with the best selection.  The others may be too small for your needs.

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3 hours ago, Leuconostoc said:

THANK YOU for the link. Read through the whole thing.

Didn't eat for >24 hours and started to feel A LOT better. Still sick, but nowhere near yesterday sick.  I decided to just talk/explain in detail how sick the food made me to one of my relatives who was very understanding. She is going to explain to other relatives that I won't be able to eat the food they offer for health reasons. She took me to a farmer's market and I now have a bunch of veggies, tofu, unflavored seaweed and unflavored dried chirimen. She's going to bake potatoes for me tomorrow and boiled me a dozen fresh eggs. I didn't eat the pre-cooked store bought eggs because they had an odor that smelled like flavoring and I didn't want to take a gamble. Finally, I can eat something. Hopefully day 1 nightmare was it. :D

So sorry it is difficult.  There is soy sauce (made with wheat) and fish flavoring in everything!   I too have neurological damage from 40 years of gluten.  I can feel your pain.  Do you want me to look for a base contact for you?   I still have a connection at my Okinawa church which is near Camp Foster.

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If you hear an ice cream truck playing morbid music, grab your money and run!  They sell roasted sweet potatoes from a truck.  Live on those.   They are delicious. Eat them as you would eat a candy bar.  It's just sweet potato.  Maybe 300-500 yen for a big one.  They are sold by weight.  served hot and ready.  I have purchased enough for a few days at a time and eaten them cold after refrigeration and loved them as well.  300 Yen per potato so plan accordingly incase  you hear that truck.

 

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