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Stuck In Japan Without Diagnosis
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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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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.

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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

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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.

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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.

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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.

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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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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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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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