Hailing From Asia - Would Like Some Advice

[Alvin]

Hi all,

I'm new to this forum. I'm 22, male and of Chinese descent, and I come from Singapore. I've been feeling unwell for a while now, did a lot of research, and chanced upon celiac disease and this forum, so I actually suspect I might have celiac. However, my medical student friend tells me that Chinese hardly get the disease, is that true? Compared to some of the symptoms I've read on this forum, mine are pretty mild. I know that celiac is pretty rare in Singapore, but I don't know about how it's like over in the States. Do people of East Asian descent get diagnosed with celiac? Anyway, I have had a weak digestive system my whole life, have always been quite prone to diarrhoea, get gastric attacks from time to time, but it was last March, after a bout of really bad constipation that my symptoms started.

Fatigue/tiredness/lack of energy (especially after eating)

Weight loss/losing muscle tone

Stomach pain from time to time (interestingly this happens on the right side, above the navel - anyone knows what part this is)?

Bloating and uncontrollable belching

Folliculitis (itchy scalp - have had this for a while I think, one or two years I think)

Eczema (behind my knee, very itchy, can't get it to heal, groin area, buttocks around the tail bone area)

Weird bowel habits - sometimes constipated, passing thin stools, sometimes passing stools in volumous amounts, or sometimes stools are "hairy", sometimes stool doesn't hold together and "breaks down" into particles, usually smelly)

Typically after BM, I feel "cold" and weak.

I've also observed some blood in my stool before.

Oh yes, I was on long term antibiotics (doxycycline) for my acne problem (which is better now, thankfully), which I was on from about June last year to about January this year. I've also visited a TCM physician, she told me that my digestive system was in poor shape and that I had trouble absorbing nutrients, this is also why I decided to suspect celiac disease. Strangely enough she advised me to cut out wheat products. (But I'm not sure if TCM recognises celiac disease in the same way Western medicine does)

What does this all mean?

Can infection with H.Pylori cause this? Or is this more indicative of malabsorption? I had colonoscopy and gastroscope(OGD/EGD) done, and the Dr said except for some mild gastritis everything else was ok. No biopsy was done; and from what I know intestinal damage doesn't show up on the scope.

I just did a FBC and tested for H.Pylori but I'll only know the results next week. But so far, results seem pretty inconclusive. Dr thinks there's nothing wrong with me and said it's probably stress from work... But it's my body, and I know much better...

Any comments/advice would really be appreciated! I'm pursuing undergraduate education, but really, for most of the time I'm so tired I don't feel like doing anything!

[Fiddle-Faddle]

Hi, Alvin, welcome aboard!

All your symptoms certainly could be celiac, or at least gluten intolerance (many feel that the only difference is what stage you're at). If they disappear on a strict gluten-free diet, that is your answer and you wouldn't need any additional testing.

From what I have read, celiac has been almost unheard of in Asian countries--but the incidence increases dramatically once Asians have moved to Europe or North America (after adopting a Western diet), and within a few generations, matches the local rate.

If your diet has always included lots of wheat-based (not rice or bean thread) noodles and breads, that could account for all your symtoms. The rash, especially, does sound like Dermatitis Herpetiformis, which is a diagnosis of celiac right there!

Good luck, and keep us posted, okay?

[Alvin]

Hi Fiddle,

Thanks for your reply. I guess it's strange to say this but, I think it's even harder to avoid gluten in Singapore, I eat mainly rice, but also bread and wheat-based Chinese noodles from time to time. And I'm sure you already know, they use wheat flour in something as innocuous as soy sauce (which is used pretty liberally in Chinese cooking, as you know). And so yes, despite being Asian I am exposed to gluten all the time, maybe not as much, but there's certainly enough of it.

[Fiddle-Faddle]

When I first went off gluten, I did not know for a couple of months that there was wheat in most soy sauces (and we eat a lot of Asian food in our family--hubby is Japanese)--yet I still felt about a million percent better. Later I read somewhere that the fermenting process does something-or-other to the gluten, making it somehow either easier to digest or less likely to trigger the immune system. Not that it would be SAFE for celiacs, but I did think it was interesting. Still, I only buy wheat-free soy sauces now.

Do they have any in Singapore? I imagine you wouldn't have our La Choy brand (it tastes awful anyway), but maybe San-J Wheat-Free Tamari? Have you had the fun of standing in the store reading the labels of every soy sauce brand yet?

[buffettbride]

Your "odd" symptoms sound very much like my daughter's before she was diagnosed. Regardless of your ethnic origin, I wouldn't rule-out Celiac just because of that.

Perhaps you could try eating gluten-free for a while to see if that improves your situation. A colonoscopy wouldn't reveal Celiac, but an endoscopy (tube in throat) would.

[kenlove]

Hi Alvin,

Im not sure about Singapore or China but I was at a conference in Japan last march that walked about the increase in wheat allergies, mostly among Japanese children. I think there were only 25 cases diagnosed of celiac in 2005 there but they are worried about it. Since I was diagnosed 2 years ago and spend a lot of time in Asia, I had to alter my diet drastically, I sure miss laksa and nonya cusine! Might be good if you can try a gluten-free or at least wheat free diet for awhile and see how that affects you. It was had for me to give up good soy sauce, chasui bao, shumai etc but I feel much better having done so. The wheat free sauce we can get in Hawaii is just not as good as some of the other Chinese and Japanese soy sauce.

Good luck

Ken

Hi all,

I'm new to this forum. I'm 22, male and of Chinese descent, and I come from Singapore. I've been feeling unwell for a while now, did a lot of research, and chanced upon celiac disease and this forum, so I actually suspect I might have celiac. However, my medical student friend tells me that Chinese hardly get the disease, is that true? Compared to some of the symptoms I've read on this forum, mine are pretty mild. I know that celiac is pretty rare in Singapore, but I don't know about how it's like over in the States. Do people of East Asian descent get diagnosed with celiac? Anyway, I have had a weak digestive system my whole life, have always been quite prone to diarrhoea, get gastric attacks from time to time, but it was last March, after a bout of really bad constipation that my symptoms started.

Fatigue/tiredness/lack of energy (especially after eating)

Weight loss/losing muscle tone

Stomach pain from time to time (interestingly this happens on the right side, above the navel - anyone knows what part this is)?

Bloating and uncontrollable belching

Folliculitis (itchy scalp - have had this for a while I think, one or two years I think)

Eczema (behind my knee, very itchy, can't get it to heal, groin area, buttocks around the tail bone area)

Weird bowel habits - sometimes constipated, passing thin stools, sometimes passing stools in volumous amounts, or sometimes stools are "hairy", sometimes stool doesn't hold together and "breaks down" into particles, usually smelly)

Typically after BM, I feel "cold" and weak.

I've also observed some blood in my stool before.

Oh yes, I was on long term antibiotics (doxycycline) for my acne problem (which is better now, thankfully), which I was on from about June last year to about January this year. I've also visited a TCM physician, she told me that my digestive system was in poor shape and that I had trouble absorbing nutrients, this is also why I decided to suspect celiac disease. Strangely enough she advised me to cut out wheat products. (But I'm not sure if TCM recognises celiac disease in the same way Western medicine does)

What does this all mean?

Can infection with H.Pylori cause this? Or is this more indicative of malabsorption? I had colonoscopy and gastroscope(OGD/EGD) done, and the Dr said except for some mild gastritis everything else was ok. No biopsy was done; and from what I know intestinal damage doesn't show up on the scope.

I just did a FBC and tested for H.Pylori but I'll only know the results next week. But so far, results seem pretty inconclusive. Dr thinks there's nothing wrong with me and said it's probably stress from work... But it's my body, and I know much better...

Any comments/advice would really be appreciated! I'm pursuing undergraduate education, but really, for most of the time I'm so tired I don't feel like doing anything!

[Alvin]

Thanks buffettbride,

I did do an endoscope, but except for some minor gastristis, there seems to be nothing majorly wrong (at least what the doctor says), but they didn't take any biopsy. Any chance that mild intestinal damage gets past that?

I suppose I could try getting off gluten for a while, but isn't it terrible when everything you eat has gluten in it? I will be going back to my military unit for a week in December, and I won't be able to control what I eat there. (In Singapore all healthy males have to serve in the armed forces, police or civil defence force, most serve in the army, serve for 2 years, then 10 more years of being in the reserve forces - basically a conscript army).

If I'm not wrong, celiac disease or gluten intolerance is unheard of in Singapore. I wouldn't be surprised if they didn't have the test for it.

But thanks everyone for your advice!

Your "odd" symptoms sound very much like my daughter's before she was diagnosed. Regardless of your ethnic origin, I wouldn't rule-out Celiac just because of that.

Perhaps you could try eating gluten-free for a while to see if that improves your situation. A colonoscopy wouldn't reveal Celiac, but an endoscopy (tube in throat) would.

[Fiddle-Faddle]

If I'm not wrong, celiac disease or gluten intolerance is unheard of in Singapore. I wouldn't be surprised if they didn't have the test for it.

You're probably right, but--try googling "celiac Singapore" and "sprue Singapore" and several things will pop up.

Since there are British and Australian nationals in Singapore, there might be a British or Australian gastroenerologist located in Singapore. That might be a place to start, too.

Villi damage is often patchy, and not visible to the naked eye. So if your doc didn't take any samples, he would have no way of ruling out villi damage. In fact, because damage is so often patchy, biopsies are hit-and-miss, and therefore not the most reliable diagnostic tool. Dietary response is a far more accurate diagnosis--though in your case, it will be difficult, given the difficulty of avoiding wheat-laden soy sauce.

I have had pretty good luck at American Chinese restaurants telling them that I can't have soy sauce, and they usually make a "white sauce" of wine, garlic, and ginger for me. Corn starch or corn flour is just fine, and that is what is almost always used as a thickener in Asian sauces.

[nora-n]

Alvin, I am in europe and here we always advice people to try to get a proper diagnosis and NOT try going gluten-free first. (or you must go back on gluten, and a lot of gluten, for many weeks or months).

I read an article about the genes, and DQ9 is also a celiac gene they say and it is common in japan.

For DH, they need to take a biopsy of healthy skin next to the rash ad the IgA is used up in the rash. For celiac, they need to take several biopsies, and I read here that newest recommendations are at least 12 and that they also recommend that they take some in the second part of the small intestine, not just the dueodenum.

I typed in coeliac chinese in www.pubmed.com and one of the abstracts is PMID 15827445 (copy and paste it into the search field and hit enter) and many coeliacs of south asian descent are DQ2 it looks like.

nora

[Fiddle-Faddle]

Alvin, I am in europe and here we always advice people to try to get a proper diagnosis and NOT try going gluten-free first.

I am convinced that biopsy of the small intestine is NOT as accurate a diagnosis as dietary response. If villi damage is often patchy and not visible to the naked eye, and they only take a few 1/2" samples out of 20 feet of intestine, then even if you do have villi damage , you are likely to get a negative biopsy. Plus, endoscopies are invasive and somewhat risky, whereas trying the diet has absolutely no risks.

However, if there is a reason to suspect something other than celiac that would show up on an endoscopy, then you would want to go ahead with one.

[mftnchn]

Hi Alvin, welcome to the board.

The Chinese for celiac disease is 乳糜泻。 You might try searching for that on google, I found several articles in Chinese but didn't notice if there were any references to Singapore. I found that info about DQ2 in Southeast Asians interesting. The thing is, with the coming and going of many races of people in Asia over the centuries, even if the gene originated in northern europe, you could have it somewhere in your ancestry, or any of the others. DQ4 sounds like the only one not associated to some degree with celiac.

Yes, on the soy sauce, and many other sauces as well which contain gluten. Also, MSG is wheat based in China, my friends tell me. How are the labeling laws in Singapore? In China, often things are not clearly labeled. Cross contamination is a major issue as well.

I agree that if possible you should get the blood tests and biopsy. Biopsy sometimes reveals damage that is visible to the eye, but often it is microscopic only. Also if you are gluten free or gluten lite before the tests, they could very likely be false negative.

Would having a diagnosis allow for you to have a special diet in the military?

[Alvin]

Hi,

Well I suppose they can't ignore someone with special dietary requirements in the military, they do make consessions for Muslims and vegetarians (but no gluten is another thing, of course).

Labelling laws are pretty strict in Singapore. (Laws in general are very strict over here). And you're right about the mixing of people in Asia, my ancestors came from Fujian province, and noodles used to comprise half their diet, so I wouldn't be surprised to have the gene for that.

That said, I don't get any discomfort after eating wheat/gluten, I don't get diarrhoea (but I do get constipated - not sure if it's due to gluten). Does anyone here feel very dehydrated/thirsty after eating gluten? Just wanna check, 'cause I seem to be getting that. (But could be due to something else)

Alvin

Hi Alvin, welcome to the board.

The Chinese for celiac disease is 乳糜泻。 You might try searching for that on google, I found several articles in Chinese but didn't notice if there were any references to Singapore. I found that info about DQ2 in Southeast Asians interesting. The thing is, with the coming and going of many races of people in Asia over the centuries, even if the gene originated in northern europe, you could have it somewhere in your ancestry, or any of the others. DQ4 sounds like the only one not associated to some degree with celiac.

Yes, on the soy sauce, and many other sauces as well which contain gluten. Also, MSG is wheat based in China, my friends tell me. How are the labeling laws in Singapore? In China, often things are not clearly labeled. Cross contamination is a major issue as well.

I agree that if possible you should get the blood tests and biopsy. Biopsy sometimes reveals damage that is visible to the eye, but often it is microscopic only. Also if you are gluten free or gluten lite before the tests, they could very likely be false negative.

Would having a diagnosis allow for you to have a special diet in the military?

[Nancym]

Dr. Fine says double DQ4, which is only found in Asians, is about the only genetic sequence that seems free of gluten intolerance. But you'd have to have 2 copies of that gene, so probably pure bred Asians only.

However, there are intolerances to all kinds of foods like dairy, even rice sometimes. Another possibility is that you're allergic to something, not just intolerant.

But if I were you I'd probably try an elimination type of diet to see if I could find the culprit.

I think SE Asians like vietnamese and thai have a lot more options when it comes to avoiding gluten, they use lots of rice noodles and fish sauce.

[mftnchn]

20% of celiacs present with constipation only, another large percentage have alternating diarrhea and constipation.

Elimination diet would help, however, that will be very difficult in the military. If you have enough time, you could try the "rare foods diet" and see if your symptoms cleared up on that, if they do, add in one food at a time.

I'd still suggest trying to get testing if possible, if you are eating enough gluten now to have the possibility of positive results.

[Wai Ling]

On 02/10/2007 at 9:43 PM, Alvin said:

Hi all,

 

I'm new to this forum. I'm 22, male and of Chinese descent, and I come from Singapore. I've been feeling unwell for a while now, did a lot of research, and chanced upon celiac disease and this forum, so I actually suspect I might have celiac. However, my medical student friend tells me that Chinese hardly get the disease, is that true? Compared to some of the symptoms I've read on this forum, mine are pretty mild. I know that celiac is pretty rare in Singapore, but I don't know about how it's like over in the States. Do people of East Asian descent get diagnosed with celiac? Anyway, I have had a weak digestive system my whole life, have always been quite prone to diarrhoea, get gastric attacks from time to time, but it was last March, after a bout of really bad constipation that my symptoms started.

 

Fatigue/tiredness/lack of energy (especially after eating)

Weight loss/losing muscle tone

Stomach pain from time to time (interestingly this happens on the right side, above the navel - anyone knows what part this is)?

Bloating and uncontrollable belching

Folliculitis (itchy scalp - have had this for a while I think, one or two years I think)

Eczema (behind my knee, very itchy, can't get it to heal, groin area, buttocks around the tail bone area)

Weird bowel habits - sometimes constipated, passing thin stools, sometimes passing stools in volumous amounts, or sometimes stools are "hairy", sometimes stool doesn't hold together and "breaks down" into particles, usually smelly)

 

Typically after BM, I feel "cold" and weak.

 

I've also observed some blood in my stool before.

 

Oh yes, I was on long term antibiotics (doxycycline) for my acne problem (which is better now, thankfully), which I was on from about June last year to about January this year. I've also visited a TCM physician, she told me that my digestive system was in poor shape and that I had trouble absorbing nutrients, this is also why I decided to suspect celiac disease. Strangely enough she advised me to cut out wheat products. (But I'm not sure if TCM recognises celiac disease in the same way Western medicine does)

 

What does this all mean?

 

Can infection with H.Pylori cause this? Or is this more indicative of malabsorption? I had colonoscopy and gastroscope(OGD/EGD) done, and the Dr said except for some mild gastritis everything else was ok. No biopsy was done; and from what I know intestinal damage doesn't show up on the scope.

 

I just did a FBC and tested for H.Pylori but I'll only know the results next week. But so far, results seem pretty inconclusive. Dr thinks there's nothing wrong with me and said it's probably stress from work... But it's my body, and I know much better...

 

Any comments/advice would really be appreciated! I'm pursuing undergraduate education, but really, for most of the time I'm so tired I don't feel like doing anything!

Hi Alvin, 

Great to have found a fellow Singaporean in this forum:) I lives in Singapore too! This is an old thread so I'm not sure if you'll reply me. Anyways, I'm curious if you're still on tcm treatments currently? If so, may I know how's it going?