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Stuck In Japan Without Diagnosis

sabin112

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sabin112 Rookie
sabin112
Posted

Hi all. This is my first post, but before I say anything I just want to mention how fantastic and supportive this community is here. I’ve been reading these forums for awhile now and discovered a plethora of information about celiac disease.

Ever since I can remember I have been suffering from weekly headaches and chronic fatigue. I never thought anything of it until 10 years ago (when I was 16) when I became lactose intolerant and started suffering from a sore throat and nasal-drip (flu-like symptoms) all the time. In later years doctors diagnosed me with a vitamin b12 deficiency, so I started taking vitamin tablets to no avail.

I have always been very skinny no matter how much I eat, but I noticed since moving to Japan, 3 years ago, I have lost even more weight. It seemed every time I was eating pizza or drinking beer I would get flu like symptoms for days after. I would not get drunk, but just feel ill. Also, I would usually be so fatigued after meals that I would almost fall asleep.

Things took a turn for the worst last year after I started drinking whey powder to help gain weight. I became very dizzy and weak and eventually got shingles and am still recovering from phn on the back of my head :(

So, I had a colonoscopy here in Japan recently and was diagnosed with colitis and malnutrition. Celiac disease basically doesn’t exist over here because I don’t think it isn’t in the Asian gene pool, so the stubborn doctors refuse to test for it or even consider it as an option.

Anyway, I go back to my home country in 1 month and can get testing done then. So, my question is should I stop eating gluten until then? I’ve been off gluten now for 5 days and am already feeling a lot better; no more mucus like diarrhea or constipation. And hair isn’t falling off my head by the hand fall everyday now! It could be some type of placebo effect, but I am also feeling a bit more energetic and not suffering from as much brain fog.

I suppose I should add my auntie and sister both suffer from celiac disease.

So what do the wise and wonderful members of this forum have to say?

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Lisa Mentor
Lisa
Posted

With Auntie and Sister diagnosed with Celiac....ah yeah, good chance with your symptoms.

I would recommend endure as much gluten as you can handle. The current recommendation is a slice or two of bread (or equivelant gluten) for eight weeks, will test accurately.

This is the full panel you should request from your doctor:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

Best of luck to you.

mushroom Proficient
mushroom
Posted

Welcome to the boards, sabin.

What I say depends on your goals. If you want a proper diagnosis, you should continue eating gluten until all testing is finished. If you want to feel better, it is pretty obvious whether you are celiac or non-celiac gluten intolerant that gluten is bad for you and you should not eat it regardless of what other people in Japan have or do not have :) And it could be your doctor doesn't know how to test for it even. Your reaction to the whey powder is probably indicative of celiac disease because that damages the part of the intestine that digests lactose. While whey powder is primarily protein, it can contain up to 5% lactose. You are skinny, have problems eating pizza and drinking beer, are fatigued and have headaches and diarrhea or constipation and mucous and hair loss, plus you also have a family history of the disease...

If you think you would doubt yourself later, wait and get the testing to be sure. If you want to feel better follow the old joke: Doctor, doctor, it hurts when I do this. Doctor: Don't do that! :D

Lisa Mentor
Lisa
Posted

Anyway, I go back to my home country in 1 month and can get testing done then. So, my question is should I stop eating gluten until then? I’ve been off gluten now for 5 days and am already feeling a lot better; no more mucus like diarrhea or constipation. And hair isn’t falling off my head by the hand fall everyday now! It could be some type of placebo effect, but I am also feeling a bit more energetic and not suffering from as much brain fog.

I suppose I should add my auntie and sister both suffer from celiac disease.

So what do the wise and wonderful members of this forum have to say?

As mushroon spoke wise and experienced words....you have five days invested in the diet and you feel better. So you are at a point of choice:

1. continue with digesting gluten until testing.

2. realized gluten is an issue and go gluten free.

3. need the diagnosis

4. consider your family history.

sabin112 Rookie
sabin112
Posted
  • Author

Thank you all for the hasty replies.

I have decided that I will quit gluten until I go back to my home country (in one months time). Mainly because I have to continue to work here and if I can get any relief from the symptoms in the meanwhile, then that's enough for me.

After I get home I will take up the gluten challange and do the testing.

Thank you again.

Lisa Mentor
Lisa
Posted

Thank you all for the hasty replies.

I have decided that I will quit gluten until I go back to my home country (in one months time). Mainly because I have to continue to work here and if I can get any relief from the symptoms in the meanwhile, then that's enough for me.

After I get home I will take up the gluten challange and do the testing.

Thank you again.

Hey Sabin,

We have many members who are over seas and many in Japan or other Asian Countries. They are very free to offer suggestion as to eating gluten free.

sabin112 Rookie
sabin112
Posted
  • Author

Hey Sabin,

We have many members who are over seas and many in Japan or other Asian Countries. They are very free to offer suggestion as to eating gluten free.

Hi Lisa,

That's a great idea! Should I start a new post? If so, what topic should I make it under?

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Lisa Mentor
Lisa
Posted

Hi Lisa,

That's a great idea! Should I start a new post? If so, what topic should I make it under?

What ever you choose....maybe "How to navigate living in Asia - gluten free" ?

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