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This is my third request through the listserve that I've made in my quest to
find other Asians with CD;  Each time, I've had exponentially more favorable
results.  Based on the responses, the discovery of CD was usually as a
result of the vigilance, awareness, and knowlegde of the person or someone
close to them- before a doctor was convinced to test them for CD, or just
fortunately, an informed doctor.
Now, for the first time, I've found other Chinese with CD thru the
listserve, as I am myself a fifth generation Cantonese Chinese American and
was diagnosed last year in February but have been GF since December 2001,
after three, short gluten challenges which devastated my health.  Like other
celiacs, I first discovered CD on my own- after more than 4 years of
symptoms.  Based on the research I've done through medical studies, I have
found a form of Dermatitis Herpetiformis found in Japanese but no evidence
that this DH is gluten-sensitive.  I have yet to find a Japanese (100%)
person with with CD.  Thank you all for your responses, Laura Yick

Here are the responses I received:

1)  hello! my friend pamela forwarded me your e-mail as i am also a chinese
american with celiac disease. my diagnoses was quite different from yours as
i was diagnosed early on by "accident". a biopsy was done on me because i
had a "suspected ulcer"=the result was a conclusion of CD. so...for a bit
over a year i've been gluten-free (as much as humanly possible that it!)
i was quite excited to get your e-mail as i've not met anyone else who is
asian with confirmed CD besides myself. my first md who specializes in cd
said that i was the first asian he had met with hundreds of patients!
where are you located? whats been the hardest thing for you? i've always
enjoyed eating so its been a bit of change...especially being chinese and a
lot of great food has soy sauce or other sauces that i just can't make at
home! but to be honest, in many ways, it has been used for much good in my
life...

2)I'm an Asian Celiac - I guess one of the few, like you.

I'm Indonesian and have lived most of my life outside of my home country. I
currently live in Munich, Germany. My CD was self-diagnosed about a year
ago. I was constantly tired, had a bloated stomach and had hay fever like
you couldn't believe, so I was sent to an allergy doctor who did a skin test
on me. Turned out I was allergic to wheat, barley, and rye, in addition to
polen, house dust, and other foods like hazelnuts, etc. All he said was to
stop eating bread and cut down on the foods i was allergic to.

Luckily enough my job allowed me time to surf on the net and do some more
research. When I found out the connection between the three grains, and when
I read all the symptoms of celiac disease, I was convinced that I wasn't
merely suffering from allergies. I went to my GP, and asked for the
antibodies test. Sure enough, it looked like I was right. I went to an
endocronologist, just to make sure, and asked if he can do a biopsy. It
turned out negative, but that's most likely because I put myself on a
gluten-free diet already. He did another blood test - after he had me on a
normal diet for 4 weeks, and the numbers were sky high. That final diagnosis
was made November last year.

From all the reading I've done, my conclusion is the reason that there
aren't so many Asian celiacs is because we don't typically eat so much of
these grains. My symptoms surfaced and got worse since I've been living in
Germany - where I've been eating a lot of bread, cookies, crackers,
pretzels, what have you, and drinking beer. I believe that in time more and
more Asians will be diagnosed celiacs - esp. those who grew up in
industrialized nations where 90% of the diet contains gluten. I left
Indonesia when I was 10 and have lived in Japan, the U.S. Austria and
Germany where wheat and gluten constitute a major part of the diet. In Japan
you wouldn't think so - but its in the soy sauce and rice vinegar that's
used in most foods.

To be frank, I believe I started having problems when I left Indonesia 21
years ago, and it's just recently reached its peak because of the quantities
of gluten I was ingesting.

My experience with doctors have taught me that you have to trust yourself
and your intuition first and foremost. If you think your cousin's baby has
celiac - then you might just be right. If I had just listened to my doctor,
I would still be having major problems right now. Just because its uncommon
for Asians to have celiac doesn't mean that it should be ruled out.

3)  I am a chinese resident currently living and working in Australia.
Recent blood tests earlier this year (May) have shown that I have CD
antibodies although the rheumatologist that I saw said that this alone does
not indicate CD. To be absolutely sure I will need a biopsy of the small
bowel which I have not got round to. Instead I have started on a GF diet
since May. I was diagnosed with Sjogren's Syndrome last year. Research has
shown the SS could be associated with auto immune thyroid disease. I came
across an article that CD is very closely related to auto immune thyroid
disease as well. This prompted me to ask my doctor for a blood test for CD &
auto immune thyroid both of which came back positive. Accordingly to the
rheumatologist the antibodies for both are present cos of SS and not the
diseases themselves. I have been having a lot of problems with my gastrics
for a long time and have been on a lot of medication. Since being on GF diet
things have improved. Since there is currently no cure for SS, I am now
seeing a chinese herbalist who specialises in auto immune diseases (which
include CD). I plan to have another blood test soon to see whether things
have improved.

4) My daughter, Jennifer, is an Asian with CD. Jennifer was adopted as a
infant. She is half Korean and we believe half Japanese. Exact ancestry is a
little shaky. She had symptoms as a young child that were never pinned down,
then had no symptoms as an adolescent. Major symptoms started in when she
was about 16 and a half. Long story.........However, we were blessed with a
pediatrician who specializes in endocrinology and she recognized CD right
off the bat. Jennifer was promptly taken off Wheat and Gluten and
immediately started to get better.

5) YES, my 6 year old Japanese American daughter (1/2 Japanese) is Celiac.
None of
the doctors diagnosed it (all 6 failed).  Me and my fiancee decided to do a
elimination diet, and lab friends recommended testing her for Antibodies.
Lo
and behold, she was positive.  I wont do a biopsy, no need.  BUt wanted you
to
know you're definitely not alone. My ex-husband (from Tokyo) also has 2
other
children affected.

7)  I hope you don't mind me telling you this story, but it is in direct
 >contrast to the one you just related. I tell it quite often because it >is
unusual. > >I am of European decent, and was diagnosed with CD in 1986. It
took >them almost 20 years, and I almost died before I was diagnosed.
Anyway, >a couple of years ago I had some complications with CD, and my
daughter >who is a nurse in California asked one of her coworkers if she
knew >anything about CD. A Doctor was standing behind her and said, what do
 >you want to know I have several patients that have CD. When my daughter
 >turned around, she is a blonde with blue eyes, He said is he your birth
 >father? She said yes. Well that is unusual, only Asians have CD. He
 >seemed to be under the impression that only Asians could have CD. There
 >is a large Asian population in Sacramento Ca. Yes, there are other >Asians
out there with CD.

8)  JJ, a gypsy, was dx's at 5yo after 4 years of trying to get some one to
test him. After he came back positive on all parts of the blood work(isn't
there 5 parts) my medical people thought maybe the other kids should be
tested. All the children are not related to each other in any way, they were
all placed through adoption. Peter had always been my constipated kid with
huge(thick) BM's. Don't mean to be gross but I would have a hard time
passing a stool this size!! Peter also tested positive for CD on all parts
of the blood work. Because children with Down Syndrome have an increased
incidiance of CD(15%) we did not go ahead and do the biopsy. I spoke with
several of the countrys leading CD dr. and they agreed that the biopsy was
not needed for my boys. But there is a dr. at UCDavis who told me without
the biopsy they only are "presumed CD".
His family are real gypsys. There origans back to northern India I
understand. This family call themselves Romanian because it is easier not to
go into a long explaination. They speak Rom, the language of the gypsy.  ...

9)  I am not Asian and am a celiac. When I have been to medical and/or
patient conferences the only Asians I've seen are health care professionals.
Dr Green, head of the Celiac Research Center @ Columbia Presbyterian in NY
had (and may still have) a Chinese-American researcher who might know.
June in NYC

10)  I would suggest you to ask your questions at this other excellent GF
forum:
http://forums.delphiforums.com/celiac/messages

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