Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

Desperate And Feeling Terrible In Japan


  • Please log in to reply

23 replies to this topic

#1 Eric_S

 
Eric_S

    New Community Member

  • Advanced Members
  • Pip
  • 10 posts
 

Posted 12 February 2012 - 12:52 AM

Hello.
My name is Eric and I'm writing this as a last ditch effort. I have read other posts on here and feel awful for their suffering, but I'm inspired by the help and hope people provide.

As I am writing this I am having a very hard time concentrating, like I'm in a fog. So please bare with me.

I am living in Japan currently. I am a seasonal worker in the ski/snowboard industry. I supervise a shop in northern Japan at an international resort town.

I am 25 and thought I was a fairly healthy person, I wasn't paying very close attention though and simply neglecting many problems, until recently my health has been crumbling.

The problems started as severe weakness and chronic fatigue mainly in my legs. Along with that I have problems concentrating and my short term memory is not the best often. I have problems with seeing as well, mainly things far away, object close to me are much easier. I have lost a lot of weight as well and have a hard time staying warm. Recently, I had a random bloody nose. My vision often pulses in a way and seem to have a short attention span too. None of these things happened to me with any regularity before now.

I am fairly positive that I am gluten intolerant, but do not have the means to get tested here in Japan, as I am not in the financial position nor do I speak Japanese well enough or even know how I go about seeing a nutritionist here, nor am I sure they would know how to help.

I am a vegan and I have been trying to adhere to a very strict gluten free diet for a week or so and the symptoms seem to fluctuate slightly, but I feel bad a lot more often than good.

I am at the point where I am paranoid about every thing that I eat. My diet for the last couple days has been reduced to rice, edamame, and some fruit, and vegetables.

This is so hard to express the full situation and I don't even really know what to ask about, I just know I need help and I am breaking down, its overwhelming and I can feel myself entering depression.

Anything would help, please.
  • 0

Celiac.com Sponsor:

#2 missy'smom

 
missy'smom

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,953 posts
 

Posted 12 February 2012 - 07:10 AM

I think you should get in and get a general check up/evaluation regardless of the gluten issue. We can often have other this out of balance as a result of the damage that gluten does to our bodies. My DH had a sudden bloody nose this year, turns out that is a symptom of high blood pressure. His was quite high so it brok the little blood vessels in his nose. Some of your other symptoms could be indicative of other conditions that should be rules out whether of not they are gluten-realated, some can be treadted independantly. Sudden weight loss can also be a sign of diabetes. I have experienced that. I don't think you should just try to bear with these symptoms until you can get to the bottom of the gluten issue. I think other tests should be done and you can continue to get to the bottom of the gluten-issue independently.

There are English help lines. Do you have the numbers?

My DH is Japanese and I lived in Japan once upon a time. Used to have all the numbers but I am afraid they may be too old. I know a Japanese Doc in LA California who knows something about celiac disease. I could give you his contact info if it would be helpful. He was educated in both Japan and America, grew up in Japan, but speaks good English. He's the one who told me about celiac disease and started my journey.
  • 0
Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11
Son: ADHD '06,
neg. CELIAC PANEL 5/07
ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08
ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08
Gluten-free-Feb. '09
other food allergies

#3 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,793 posts
 

Posted 12 February 2012 - 09:02 AM

I'm sorry your having such a hard time. Do realize if you go gluten free before testing that you would have to do a lenghty gluten challenge if you decide later you want testing. Being gluten free will not have any effect on testing for any other health issues though. I agree it might not be a bad idea to just get a general checkup.
What you are eating is what you should be eating to help you heal if you are not going to have any celiac testing. Single ingredient foods make for less chance of being glutened or CC'd in the beginning.
You might find something like the Triumph Dining Cards to be helpful. They have them for different languages and I think Japanese is one of the them. They might make it easier to shop and to go to restaurants.
It does take time to heal and we can have ups and downs at first. Avoid dairy for now and be aware that some of us do have other intolerances. Soy is one that is pretty common so you may want to consider dropping that for a little while if you are still having issues gluten and dairy free and the physical has ruled out other reasons for illness.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#4 eatmeat4good

 
eatmeat4good

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,699 posts
 

Posted 12 February 2012 - 10:07 AM

Many people with gluten problems also have problems with Soy. If you don't get better with gluten elimination you might try eliminating the edamame. I didn't think I would be sensitive to soy but it turns out it is really bad for me. Especially causing problems with depression and anxiety that happen almost instantly whenever I get either gluten or soy. I knew that gluten could cause the depression symptoms, but I had no idea about soy causing depression. It made a big difference in my health.

I don't know how important it is to you to remain vegan, but my healing went really fast when I started eating more meat. I think the increased protein has made all the difference in the world to me. My muscles and my mental functioning are so much better now. It is overwhelming to be in that foggy state of mind that you describe and I lived with that for a long, long time. It never happens now as long as I stick to meat and vegetables. If you want to stay vegan, I hope you can find a source of protein that isn't soy based to see if increasing protein will help you.
  • 1
Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#5 Skylark

 
Skylark

    Glutenologist

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,490 posts
 

Posted 12 February 2012 - 02:11 PM

The problems started as severe weakness and chronic fatigue mainly in my legs. Along with that I have problems concentrating and my short term memory is not the best often. I have problems with seeing as well, mainly things far away, object close to me are much easier. I have lost a lot of weight as well and have a hard time staying warm. Recently, I had a random bloody nose. My vision often pulses in a way and seem to have a short attention span too. None of these things happened to me with any regularity before now.

Eric, these all can be symptoms of radiation poisoning, particularly the chronic fatigue, weight loss and nosebleeds. Did it all start since the Fukushima accident? The situation is quite a bit worse than the Japanese government admits. Where in northern Japan are you, what is the microseivert/hour exposure where you are sleeping and spending most of your time, and how much care are you taking to avoid radioactive cesium in your food?
  • 0

#6 MinnesotaCeliac

 
MinnesotaCeliac

    Community Member

  • Advanced Members
  • PipPipPip
  • 29 posts
 

Posted 12 February 2012 - 02:30 PM

Eric, let first start with that I empathize and understand that this would be overwhelming as you are in a very tough position. Dealing with an illness is tough enough, but to do it whilst under-insured and away from home(in a country that is not your 1st language) really MUST be hard on you. I do hope you are able to see a doctor soon. If not only to test for celiac/gt but to rule out other issues. I can appreciate you living a vegan lifestyle, but if you are indeed celiac you would already have a tough time getting the nutrients you need (your uptake of nutrients is compromised with a damaged small intestine). You may need to reconsider your diet, it can be done vegan(there are some good vegan folks on this forum that may be able to help), however it will be very tough. Morally you may not be able too, but would you consider modifying the diet to include eggs and fish? I know it is not a vegan diet, but it would add needed protien and nutrients. I suffered with brain fog and was deficient in iron, d, b,...etc and noticed improvement as they fell in the normal range as my gut healed (I also take a one a day vitamin with iron). There are many knowledgable and helpful folks on this board, so keep reading and posting. One for the knowledge and two so you do not feel so isolated. I'm not sure how I can help, but if it is moral support I'm there for you. Good luck.
  • 1

#7 Pauliewog

 
Pauliewog

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 116 posts
 

Posted 12 February 2012 - 04:13 PM

I am also in Japan and am trying to find out if I have Celiac or not. It is extremely difficult because Asians usually do not get Celiac so doctors here don't even know what it is (aside from having read it on a page in a medical text). The hospital I went to didn't even have the blood tests and finally the doctor was able to have my blood sent to the US for testing. If you don't have health insurance here then those options are going to be hard.

Not eating gluten here is hard because of the soy sauce. It eliminates pretty much most foods with any broth or seasoning. Additionally, being vegan makes it harder. If you ate fish you could get some protein that way. Basically you are left with cooking for yourself. If you can eat soy then tofu is an option.

From your post I am assuming you are in Hokkaido. If you can find some import stores then you can get things like canned beans, rice noodles, etc. Ask if there is a Kaldi Coffee near you (They are in Sapporo-- assuming you are in Hokkaido). They are an importer as well and I have found gluten free (label even says) Indian curry mixes that are mixed with coconut milk.

Also, Tengu Natural foods has an online store (English) with a Gluten free section. Be careful though, they don't really know what gluten free is and I found rye products in that group. Just check the product then go to the product's homepage and check the ingredients. They sell wheat free tamari which is like a soy sauce. I don't notice any taste difference. It is just a bit thicker.

http://store.alishan...dex&language=en

The Foreign Buyer's Club also has a lot of gluten free things. It just depends on how long you are going to be here. Also, if you can find someone with a Costco membership they sell lots of nuts quite cheaply compared with Japanese stores.

It isn't easy!
  • 0

#8 ciamarie

 
ciamarie

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 419 posts
 

Posted 12 February 2012 - 06:16 PM

Eric, these all can be symptoms of radiation poisoning, particularly the chronic fatigue, weight loss and nosebleeds. Did it all start since the Fukushima accident? The situation is quite a bit worse than the Japanese government admits. Where in northern Japan are you, what is the microseivert/hour exposure where you are sleeping and spending most of your time, and how much care are you taking to avoid radioactive cesium in your food?

That was actually my thought, also. The nuclear plants at Fukushima are still emitting large amounts of radiation, and from recent articles I've seen (http://enenews.com/) the status of 'cold shutdown' may be questionable. So, it may depend where in northern Japan you are, check out this site: http://blog.safecast.org/

My personal suggestion would be to get an iodine supplement (I have a liquid one) or some vitamin supplements that have iodine. Also try to eat as much food as possible that's from outside of Japan. Or just leave.
  • 1
Gluten-free since the end of October 2011

#9 Eric_S

 
Eric_S

    New Community Member

  • Advanced Members
  • Pip
  • 10 posts
 

Posted 12 February 2012 - 08:14 PM

I think you should get in and get a general check up/evaluation regardless of the gluten issue. We can often have other this out of balance as a result of the damage that gluten does to our bodies. My DH had a sudden bloody nose this year, turns out that is a symptom of high blood pressure. His was quite high so it brok the little blood vessels in his nose. Some of your other symptoms could be indicative of other conditions that should be rules out whether of not they are gluten-realated, some can be treadted independantly. Sudden weight loss can also be a sign of diabetes. I have experienced that. I don't think you should just try to bear with these symptoms until you can get to the bottom of the gluten issue. I think other tests should be done and you can continue to get to the bottom of the gluten-issue independently.

There are English help lines. Do you have the numbers?

My DH is Japanese and I lived in Japan once upon a time. Used to have all the numbers but I am afraid they may be too old. I know a Japanese Doc in LA California who knows something about celiac disease. I could give you his contact info if it would be helpful. He was educated in both Japan and America, grew up in Japan, but speaks good English. He's the one who told me about celiac disease and started my journey.


Thank you. I think I'm done trying to figure this out myself and I'll just have to pay whatever it is to get the check-up. I have some Japanese co-workers and friends and one will probably be able to go with me. I think you're right that I need to deal with all the issues and don't pin to much on the gluten part. I'm going to get some tests done and see what they say. Thank you again, I need this push to go to the doctors.
  • 0

#10 Eric_S

 
Eric_S

    New Community Member

  • Advanced Members
  • Pip
  • 10 posts
 

Posted 12 February 2012 - 08:18 PM

I'm sorry your having such a hard time. Do realize if you go gluten free before testing that you would have to do a lenghty gluten challenge if you decide later you want testing. Being gluten free will not have any effect on testing for any other health issues though. I agree it might not be a bad idea to just get a general checkup.
What you are eating is what you should be eating to help you heal if you are not going to have any celiac testing. Single ingredient foods make for less chance of being glutened or CC'd in the beginning.
You might find something like the Triumph Dining Cards to be helpful. They have them for different languages and I think Japanese is one of the them. They might make it easier to shop and to go to restaurants.
It does take time to heal and we can have ups and downs at first. Avoid dairy for now and be aware that some of us do have other intolerances. Soy is one that is pretty common so you may want to consider dropping that for a little while if you are still having issues gluten and dairy free and the physical has ruled out other reasons for illness.


I realize I will have to face a challenge possibly some day down the road, but I'll deal with that when I get there and I'm okay with it. I was just done with the irregular BMs and I don't want to go back to gluten right now. I've been dairy free for 8 months since I turned vegan, but I will take your advice and avoid soy for now to see if that helps. I'm also going to get a check-up soon. Thank you so much for the help.
  • 0

#11 Eric_S

 
Eric_S

    New Community Member

  • Advanced Members
  • Pip
  • 10 posts
 

Posted 12 February 2012 - 08:22 PM

Many people with gluten problems also have problems with Soy. If you don't get better with gluten elimination you might try eliminating the edamame. I didn't think I would be sensitive to soy but it turns out it is really bad for me. Especially causing problems with depression and anxiety that happen almost instantly whenever I get either gluten or soy. I knew that gluten could cause the depression symptoms, but I had no idea about soy causing depression. It made a big difference in my health.

I don't know how important it is to you to remain vegan, but my healing went really fast when I started eating more meat. I think the increased protein has made all the difference in the world to me. My muscles and my mental functioning are so much better now. It is overwhelming to be in that foggy state of mind that you describe and I lived with that for a long, long time. It never happens now as long as I stick to meat and vegetables. If you want to stay vegan, I hope you can find a source of protein that isn't soy based to see if increasing protein will help you.


I'm going to cut out soy and see if that helps. I have eaten a lot of it in the past, as with gluten, so I'm guessing there is a good chance I have a sensitivity to it now. I want to do everything I can to stay vegan. When I hit my low my resolve was wavering, but it will take a lot and all other options exhausted before I give up my dedication to veganism. I hope I can find a protein source as well. Thank you for all the advice.
  • 0

#12 Eric_S

 
Eric_S

    New Community Member

  • Advanced Members
  • Pip
  • 10 posts
 

Posted 12 February 2012 - 08:26 PM

Eric, these all can be symptoms of radiation poisoning, particularly the chronic fatigue, weight loss and nosebleeds. Did it all start since the Fukushima accident? The situation is quite a bit worse than the Japanese government admits. Where in northern Japan are you, what is the microseivert/hour exposure where you are sleeping and spending most of your time, and how much care are you taking to avoid radioactive cesium in your food?


To be honest, I haven't taken any precautions really to avoid radiation poisoning. I'm living in Niseko, which is near Sapporo, it's an international ski town. No one else here seems to be experiencing any problems, but I don't know anyone that is eating the way I do. I will look into this more. Thank you for the response.
  • 0

#13 Eric_S

 
Eric_S

    New Community Member

  • Advanced Members
  • Pip
  • 10 posts
 

Posted 12 February 2012 - 08:31 PM

Eric, let first start with that I empathize and understand that this would be overwhelming as you are in a very tough position. Dealing with an illness is tough enough, but to do it whilst under-insured and away from home(in a country that is not your 1st language) really MUST be hard on you. I do hope you are able to see a doctor soon. If not only to test for celiac/gt but to rule out other issues. I can appreciate you living a vegan lifestyle, but if you are indeed celiac you would already have a tough time getting the nutrients you need (your uptake of nutrients is compromised with a damaged small intestine). You may need to reconsider your diet, it can be done vegan(there are some good vegan folks on this forum that may be able to help), however it will be very tough. Morally you may not be able too, but would you consider modifying the diet to include eggs and fish? I know it is not a vegan diet, but it would add needed protien and nutrients. I suffered with brain fog and was deficient in iron, d, b,...etc and noticed improvement as they fell in the normal range as my gut healed (I also take a one a day vitamin with iron). There are many knowledgable and helpful folks on this board, so keep reading and posting. One for the knowledge and two so you do not feel so isolated. I'm not sure how I can help, but if it is moral support I'm there for you. Good luck.


Thank you all the kind words. I appreciate it so much, its hard to express. I will see a doctor soon. I finally realize these problems are too serious to not just go see what they can tell me and deal with the money issue later. I've started aggressively taking vitamin D and B12 supplements to see if this will help. I want to exhaust my options before I give up my vegan diet. Again, thank you so much for your response. Everyone here has been so helpful.
  • 0

#14 Eric_S

 
Eric_S

    New Community Member

  • Advanced Members
  • Pip
  • 10 posts
 

Posted 12 February 2012 - 08:37 PM

I am also in Japan and am trying to find out if I have Celiac or not. It is extremely difficult because Asians usually do not get Celiac so doctors here don't even know what it is (aside from having read it on a page in a medical text). The hospital I went to didn't even have the blood tests and finally the doctor was able to have my blood sent to the US for testing. If you don't have health insurance here then those options are going to be hard.

Not eating gluten here is hard because of the soy sauce. It eliminates pretty much most foods with any broth or seasoning. Additionally, being vegan makes it harder. If you ate fish you could get some protein that way. Basically you are left with cooking for yourself. If you can eat soy then tofu is an option.

From your post I am assuming you are in Hokkaido. If you can find some import stores then you can get things like canned beans, rice noodles, etc. Ask if there is a Kaldi Coffee near you (They are in Sapporo-- assuming you are in Hokkaido). They are an importer as well and I have found gluten free (label even says) Indian curry mixes that are mixed with coconut milk.

Also, Tengu Natural foods has an online store (English) with a Gluten free section. Be careful though, they don't really know what gluten free is and I found rye products in that group. Just check the product then go to the product's homepage and check the ingredients. They sell wheat free tamari which is like a soy sauce. I don't notice any taste difference. It is just a bit thicker.

http://store.alishan...dex&language=en

The Foreign Buyer's Club also has a lot of gluten free things. It just depends on how long you are going to be here. Also, if you can find someone with a Costco membership they sell lots of nuts quite cheaply compared with Japanese stores.

It isn't easy!


I hope you will find the help you need in the end. My thoughts are with you in dealing with this problem, it's hard and isolating to deal with it here in Japan. Thank you for the recommendations, I'll look into getting some imported things. I'm perfectly fine with cooking everything for myself and will cook a ton of it, when I finally figure out what I can and need to eat. Thank you again for all the help.
  • 0

#15 Eric_S

 
Eric_S

    New Community Member

  • Advanced Members
  • Pip
  • 10 posts
 

Posted 12 February 2012 - 08:41 PM

That was actually my thought, also. The nuclear plants at Fukushima are still emitting large amounts of radiation, and from recent articles I've seen (http://enenews.com/) the status of 'cold shutdown' may be questionable. So, it may depend where in northern Japan you are, check out this site: http://blog.safecast.org/

My personal suggestion would be to get an iodine supplement (I have a liquid one) or some vitamin supplements that have iodine. Also try to eat as much food as possible that's from outside of Japan. Or just leave.


I'm a little nervous about this now as I do eat a lot of fresh vegetables and fruit that could be contaminated. I'll try figuring out whether that is the problem. I hope they will check for this when I see the doctor. I'm not sure how to get iodine supplements yet, but I looked up what foods have iodine in them and Nori seemed to have a bit, so I ate all the Nori seaweed I had and will buy more soon to see if this helps at all, until I find some iodine supplements. Thank you for the links and the advice.
  • 0




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: