Ethnic Frustrations

[Guest Viola]

Hello all, I have a Chinese friend who very much needs to be tested, but the doctors all say it is a European disease. Could anyone tell me if you are or know of anyone NOT of European background?

In my opinion, if anyone is eating a North American diet, or European diet the disease could and must show up.

What do you all think???

[mytummyhurts]

I know there was somebody on here once who posted from Korea. Of course, that doesn't necessarily mean that is their heritage now that I think about it.

[frenchiemama]

I don't know anyone personally, but I have seen statisitics calculated for non-caucasions and, although it is not as common, it is most certainly possible. I would advise your friend to seek out another doctor.

[mle-ii]

Right, seems strange that they won't test for it. Hell it's genetic isn't it. So there is the potential that they could have this particular gene even if they didn't decend from N European.

[celiachap]

I'd guess that there may be a lot more Asian people with undocumented Celiac, but the statistics are off because their diets are less prone to aggravate it.

[Carriefaith]

That's weird that the doctors say that... There is no reason why they couldn't get it if they are on the north american diet. There are probably less cases of celiac amoung Asians than Europeans because in Asia the staple food is rice, thus many people in Asia would be on a gluten-free diet or close to one anyway.

[celiachap]

I live in a neighborhood with a lot of Asians, and their diets are rice-based, for carbohydrates, rather than wheat. You can get a bag of rice pasta for about 79 cents in a Chinese supermarket. They also have a lot of rice cakes, and all different types of similar products. You have to watch out for gluten in the soy sauce, but there are types that are gluten free.

If they have Celiac, it would not surprise me, either, if it’s under control because they don't OD on wheat, like I did.

Real bagels used to be called "High-Gluten Water Bagels". Before I even knew I had Celiac, I knew not to have any on Sunday night, because of the reaction I would get the next day. Many commercial "bagels" are not the real thing. Unfortunatly, we cannot have either. I've tired gluten free bagels, which are safe, but didn't like them very much.

One of my worst experiences was many years ago, after consuming almost a box of Grape Nuts (which interestingly contains neither grapes nor nuts) cereal over a few days. That stuff has got to be the WORST thing for us - for me, it was worst than the bagels. I never ate it again, and that was a few decades ago.

[skbird]

I used to love Grape Nuts - in fact, the week before going gluten-free I was eating my first box in several years (had been low carb for a couple of years before gluten-free). I still miss them. That and Wheat Chex, oh and Shredded Wheat.

I've *made* water bagels before. They are definitely different than most commercial ones. Gluten free bagels just don't have the appeal to me that wheat ones did.

My brother bought the engagement ring today he is going to give to his girlfriend - she's Chinese. Since we will be related... I'm going to be doing a lot of question-asking about food, gluten, etc. Well, I guess I can wait until after the wedding!

Stephanie

[celiac3270]

Actually, there's an equal and in some cases, higher prevalence in celiac in Africans than in Europeans or Americans--very high prevalence in some areas. It's very rare in Asians, but it happens.

[Carriefaith]

Actually, there's an equal and in some cases, higher prevalence in celiac in Africans than in Europeans or Americans

I've read that too, and it is also very underdiagnosed in Africa.

[debmidge]

With the fact that there's been intermarriage and migration for decades-who knows centuries! there's the possbility that any nationality could have had an ancestor who had the gene for celiac.

[lushgreen]

I am South Asian and suspect celiac disease for myself even though many (very frustratingly) are telling me it is impossible because of my ethnicity (am waiting for blood results). I had done some searches on the net and found that there is less of an incidence in non-European descended communities but not impossible.

I think a few days ago I had come across a poster here on this board who is Chinese (maybe you can do a search?) and there are at least three others here who are of South Asian descent. I don't know if there are any African or African-American posters...?

[Guest Viola]

Lushgreen .. have you been tested? And if so, did you have any trouble getting tested?

My friend is from China, but has lived in this country for over 20 years and has adopted the Canadian life style for the most part, including much of the diet. I wish more doctors would just start thinking outside the box and realize that statistics aren't hard and fast rules. And mostly, I wish they would realize that doing at least the blood tests is much cheaper in the long run than having these patients going to doctors sick constantly. If nothing else, it would rule out Celiac Disease and they could move on.

[Guest Viola]

Oops, just re-read your post and realize that you are waiting blood test results

Please let us know how you make out.

[lushgreen]

When I went to get tested I was steeled to hear refusals based on my ethnicity but very fortunately, it did not happen. However, there has been much skepticism from my own family who are not supportive about getting tested (my symptoms have been dismissed as being due to IBS and/or depression).

I agree - fine, if it turns out to not be celiac, but at least I will know that I have done the responsible thing by considering it (given the particular constellation of symtoms I have) and I can then go on to figuring out what it could be.

I think that there must be a high incidence of celiac disease in parts of South Asia with enormous underdiagnosis because of the absence of classic symptoms and general ignorance about the ways in which celiac disease can present (particularly in adults, without major GI issues), combined with the erroneous idea that it is a European disease.

In the part of South Asia that I come from, wheat is consumed with every meal. Bread is cooked fresh (rotis or some variation of it) in EVERY household, once, sometimes two or three times a day! And bread is not eaten as a side - it is used with all the other items. (This is in contrast with other parts of the region where rice is the main event). How could there not be problems with gluten tolerance where this has been the eating pattern for millenia??

[TawnyaK]

My husband is from Sri Lanka and our daughter is adopted from India. Gluten, especially wheat, is also part of the diet even in South India and especially in Sri Lanka (e.g., roti, savory snacks, and cakes/pastries). Our daughter, age 2, was diagnosed with celiac disease one month ago. If you do a search on the Journal of Indian Gastroenterology, you'll find some more recent articles on celiac disease in South Asia, particularly in north India where wheat is consumed in higher concentration. The difficulty with diagnosing celiac disease in India is also the fact that diarrhea and malnourishment is common, per the UNICEF statistics. Short stature and anemia are also possible characteristics of celiac disease in Indians. As for celiac disease being an inherited disease in South Asia, well, the articles indicate that north Indians with celiac disease have a different haplotype than Europeans with celiac disease. It does appear to be inherited. There is a Celiac society in Delhi - Open Original Shared Link

Tawnya K.

When I went to get tested I was steeled to hear refusals based on my ethnicity but very fortunately, it did not happen. However, there has been much skepticism from my own family who are not supportive about getting tested (my symptoms have been dismissed as being due to IBS and/or depression).

I agree - fine, if it turns out to not be celiac, but at least I will know that I have done the responsible thing by considering it (given the particular constellation of symtoms I have) and I can then go on to figuring out what it could be.

I think that there must be a high incidence of celiac disease in parts of South Asia with enormous underdiagnosis because of the absence of classic symptoms and general ignorance about the ways in which celiac disease can present (particularly in adults, without major GI issues), combined with the erroneous idea that it is a European disease.

In the part of South Asia that I come from, wheat is consumed with every meal. Bread is cooked fresh (rotis or some variation of it) in EVERY household, once, sometimes two or three times a day! And bread is not eaten as a side - it is used with all the other items. (This is in contrast with other parts of the region where rice is the main event). How could there not be problems with gluten tolerance where this has been the eating pattern for millenia??

[Gemini]

That's weird that the doctors say that... There is no reason why they couldn't get it if they are on the north american diet. There are probably less cases of celiac amoung Asians than Europeans because in Asia the staple food is rice, thus many people in Asia would be on a gluten-free diet or close to one anyway.

Being on the North American diet alone will not trigger celiac disease for anyone...you have to have the genetic predisposition. Plus, may Asian cultures do eat a lot of wheat in noodles and soy sauces. My guess would be that this person may have the genetic link from someone in their background and the doctor should do gene testing to rule it out. You are also going to see more people here in the US of different cultures who have celiac disease....there is so much inter-marrying here that it's bound to cross lines. This is the downside of marrying outside one's culture. It's also going to become much more difficult to find organ donors that match for transplant surgeries...the more mixed your background, the less likely a match will be found.

[Fiddle-Faddle]

I know one Chinese guy who does have either celiac or gluten intolerance, and it started not long after he came to North America and began a Western diet.

I did read that celiac rates in Asians in Asia are almost unheard of, but that in each successive generation in Europe and North America, their rates quickly increase, and after 3-4 generations, their rates are nearly equal to those of European heritage.

Dang--can't remember where I saw that. If anybody finds it, please post it!

[mftnchn]

According to Enterolab the only genotype not associated with gluten sensitivity is DQ4, only found in Asians. Now of course there are other factors than genotype.

I have read that more are getting diagnosed in Asia. Here in China though, I have yet to talk to anyone who has even heard of the disease. They find it incredulous that someone can't eat wheat.

I'd love to hear from more Asians with the disease, and especially if they know their genotype.

[Candy]

Can your Chinese friend go to ,www.enterolab.com? That's where I went to SEE if I was dealing with Celiac Disease.I didn't have health insurance,but could come up with $150 to speculate and SEE if I was subject to wheat intolerance. I like that the testing was in my hands and that I didn't have to beg someone else to agree that I should be tested.

There are more than one or two varieties of Celiac genes-kids in India get a variety of it,and India Indians are a variety of Caucasian.But I know very little of this condition ,so I don't know how extensive it is worldwide,but scientists know,so it's best to go ask them.

Even many Caucasians say their Physician won't test them for it-You sort of have to get "lucky" to get tested and diagnosed in this country(the USA).No one seems too willing to test you for anything serious.I went to three doctors and I was very sick.The first seemed unaware of the extensiveness of the condition,the second I sought declined to test me for anything,he said as they all do, that everybody is tired and everybody has heartburn,and dry eyes.He said he'd test me for nothing.The third I went to was a kind,well intentioned person,who actually ran bloodwork on me,then follow up with another test,and I got one diagnosis for Sjogrens,which from what I read on this site accompanies Celiac Disease.Even if there isn't much that can be done,since there are no major cures,it still helps to be diagnosed so people know why you feel sick,or why you can't do everything you'd like to do-and you can tend to your health with supplements and proper food and any other lifestyle adjustments.Your Chinese friend could also have a wheat allergy-but a doctor should look into it.

[Candy]

Hey Fiddle Faddle-I agree with what you read about Chinese American developing wheat intolerance.When I first thought I had it, I read that it is rare in Africa and Asia ONLY because they don't eat wheat in the first place.Many Asians eat rice,many Africans eat sorghum,and corn meal,and injera bread made out of some other grain.But the Article implied that they'd develop wheat intoleance IF they ATE Wheat ,but they don't primarily eat it, so they don't develop wheat intolerance.But then what does genes have to do with it then?Maybe anyone who eats wheat can get wheat intolerance-I made many a loaf of homemade bread before I came down with this condition-I even got a bread machine-Hell ,I made bread every week. MAYBE I BROUGHT IT ON MYSELF. My other family members have no problem with wheat that I know of - I'm a Mutant I guess.

[Gemini]

Hey Fiddle Faddle-I agree with what you read about Chinese American developing wheat intolerance.When I first thought I had it, I read that it is rare in Africa and Asia ONLY because they don't eat wheat in the first place.Many Asians eat rice,many Africans eat sorghum,and corn meal,and injera bread made out of some other grain.But the Article implied that they'd develop wheat intoleance IF they ATE Wheat ,but they don't primarily eat it, so they don't develop wheat intolerance.But then what does genes have to do with it then?Maybe anyone who eats wheat can get wheat intolerance-I made many a loaf of homemade bread before I came down with this condition-I even got a bread machine-Hell ,I made bread every week. MAYBE I BROUGHT IT ON MYSELF. My other family members have no problem with wheat that I know of - I'm a Mutant I guess.

Candy.......in order to develop Celiac Disease, you HAVE to have the genetic predisposition (of which I am convinced the medical community is not really good at yet, as far as discovering the genes related to it), have to trigger and have to be eating gluten in your diet. Obviously, you cannot develop a disease related to wheat, barley and rye if you are not ingesting them. You absolutely cannot develop Celiac if you do not have any genetic predisposition to it. I think where people get hung up is by listening to the the AMA and only going by what they consider a Celiac gene....DQ2/DQ8. I'm sure there are many others not recognized yet.

If a Chinese person develops celiac disease after moving to the States and eating a Western diet rich in gluten, then they have triggered for it and have a predisposition for it also. You just don't develop celiac disease because you are eating a different diet in a different country. I would guess it is more rare in Asian countries but I firmly believe that every country that bases it's diet on wheat, barley or rye could potentially develop celiac disease from the criteria mentioned above. I also think most white Europeans are at a disadvantage because most eat horrible diets, loaded with refined carbs....this is not so true of other countries. This, along with your genes and a trigger, will push a person over the edge. You are also going to see more of it here in the US in the Asian community because they often marry outside their culture today and pass the gene onto their children thru intermarriage.

[Fiddle-Faddle]

Candy.......in order to develop Celiac Disease, you HAVE to have the genetic predisposition

I am not convinced that this is true. I think the genes indicate a predisposition, but cannot be used to rule out celiac. There have been too many reports of biopsy-diagnosed celiacs who do NOT possess the supposedly celiac genes.

Part of the problem stems from the current definition of celiac, which is based on villi damage only, while it has already been proved (by DH, for starters) that one can have celiac and not have villi damage.

[raen]

actually, there are medical documents online that clearly state it is most common in Europeans, but common in Africans, and Asians too.

if needed, you could tell your friend to print out a page like that.

my brother is a mix of korean and cherokee.. and he has celiac. unexplained stomach-cancer is not uncommon in a number of asian countries - one theory is that celiac has a hand in it.