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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

African Americans And Celiac Disease
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18 posts in this topic

Okay. So while I was looking up info on celiac disease, I realized that almost every site i've referred to, it explains that it predominately affects White Europeans. What bothered me the most is that I am half African American and half European, and I still managed to get this disease. Hehehe. So much for that. But what has really been bugging me is that there is so few support groups, sites, or anything that raises the awareness of celiac disease in African Americans and other race groups for that matter.

I would have never even known about this disease if my boyfriend didn't suggest that I might have had it. I would have never gotten tested. My twin brother was diagnosed with Chrons Disease 5 years ago, I think he has Celiac disease. Infact, I think everyone in my family has it. But when I tried to explain to them that they might have it, they kept telling me that this was my problem and to not include them. And that they personally think the disease doesn't even exhist.

This is not only affecting me but I feel its affecting African Americans pretty negatively. :( What do you think?

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Okay. So while I was looking up info on celiac disease, I realized that almost every site i've referred to, it explains that it predominately affects White Europeans. What bothered me the most is that I am half African American and half European, and I still managed to get this disease. Hehehe. So much for that. But what has really been bugging me is that there is so few support groups, sites, or anything that raises the awareness of celiac disease in African Americans and other race groups for that matter.

I would have never even known about this disease if my boyfriend didn't suggest that I might have had it. I would have never gotten tested. My twin brother was diagnosed with Chrons Disease 5 years ago, I think he has Celiac disease. Infact, I think everyone in my family has it. But when I tried to explain to them that they might have it, they kept telling me that this was my problem and to not include them. And that they personally think the disease doesn't even exhist.

This is not only affecting me but I feel its affecting African Americans pretty negatively. :( What do you think?

Its 2 issues ...

The first is quite common, that is for some reason families sometimes get all defensive over celiac disease because its genetic. Its almost like some 'guilt thing' which is obviously silly but happens all the same.

As for the racial genetic side ? I guess it is fairly uncommon ... in most things I tend to think that trying to 'promote' a certain disease or anything else for any specific racial group is best only if that group are at particular risk, not the inverse ??? Without trying to sound blazee' about it we would end up with the East Asian American Diabetics, Latin American Cardiac arhythmia Society etc. hen really these things are best looked at and publicized as a whole not split into subgroups etc. ???

As for it affecting African Americas negatively then what about Africans? This in itself is lots of subgroups ...

Would you have a Massai awareness group and a Xosa Group ?? Probably not .. so I'm just saying this to highlight that it is best to only make special awareness groups in at risk populations or the overall awareness ends up diluted?

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Okay. So while I was looking up info on celiac disease, I realized that almost every site i've referred to, it explains that it predominately affects White Europeans. What bothered me the most is that I am half African American and half European, and I still managed to get this disease. Hehehe. So much for that. But what has really been bugging me is that there is so few support groups, sites, or anything that raises the awareness of celiac disease in African Americans and other race groups for that matter.

I would have never even known about this disease if my boyfriend didn't suggest that I might have had it. I would have never gotten tested. My twin brother was diagnosed with Chrons Disease 5 years ago, I think he has Celiac disease. Infact, I think everyone in my family has it. But when I tried to explain to them that they might have it, they kept telling me that this was my problem and to not include them. And that they personally think the disease doesn't even exhist.

This is not only affecting me but I feel its affecting African Americans pretty negatively. :( What do you think?

I am sure that it'll be discovered that all races have a small segment who have celiac: it just isn't going to be in large enough numbers to make a case for a African-Amercian (or fill in the blank) Celiac Society group emerge. However, I urge you and all of those of non-white background to stick to the societies already in place as splinter groups only dilute the cause of celiac. Everyone knows there's power in numbers and one large group cannot be ignored.

Secondarily if your family is also a split race background, they shouldn't be so uninterested. I guess they feel "what they don't know won't hurt them.."

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Okay. So while I was looking up info on celiac disease, I realized that almost every site i've referred to, it explains that it predominately affects White Europeans. What bothered me the most is that I am half African American and half European, and I still managed to get this disease. Hehehe. So much for that. But what has really been bugging me is that there is so few support groups, sites, or anything that raises the awareness of celiac disease in African Americans and other race groups for that matter.

I would have never even known about this disease if my boyfriend didn't suggest that I might have had it. I would have never gotten tested. My twin brother was diagnosed with Chrons Disease 5 years ago, I think he has Celiac disease. Infact, I think everyone in my family has it. But when I tried to explain to them that they might have it, they kept telling me that this was my problem and to not include them. And that they personally think the disease doesn't even exhist.

This is not only affecting me but I feel its affecting African Americans pretty negatively. :( What do you think?

I agree with you. I am black and my GI looked at me like I was crazy when I suggested celiac. Most American blacks know nothing of celiac disease. I believe my sister and cousin are symptomatic, but neither take it seriously. I am pretty sure my uncle had it as well, and that it played a hand in his early death.

Bravie & gfp I don't think the OP was suggesting that there be an "African American Celiac Society" (example) or any other splinter group. Just that awareness needs to be raised that African Americans (AA) are at risk as well. Take for instance heart disease and hypertension. Doctors know that for whatever reason it seems to be more prevalent in AA populations, so they more aggressively watch for it. AA community groups also advocate and raise awareness among AA populations. But you do not see an African American Hypertension Association or an African American Heart Association. The existing organizations are just fine.

I think the problem lies in how we as a country deal with race and appearances. Well he looks black so he must be *all* black. This is just not the case. My cousin is blacker than I am, and her grandfather is Scottish, straight from Scotland. But you wouldn't know her ancestry by her appearance. The truth is a good portion of the AA population have European and Native American ancestry to varying degrees depending on location, and appearance is not a good indicator of it. The following links talk about this issue:

Link: How white are blacks?

Link: DNA research

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The truth is a good portion of the AA population have European and Native American ancestry to varying degrees depending on location, and appearance is not a good indicator of it.

I was going to post this same thing last night but I hit something wrong on my keyboard and lost everything! Sigh. Anyway, except for first and maybe second generation immigrants, there are few if any African Americans of pure African descent in North America. There don't call America a melting pot for no reason!

Bravie, you may think of yourself as African American, but if you are half European, you are just as much one as the other, no matter what you look like.

If your family would like to believe that celiac is a white people's disease, tell them OK fine, your white half has it, and maybe theirs does, too! :lol::lol::lol: (sorry) Seriously, good luck with trying to convince them to at least try the diet. Others have posted family reluctance so you are not alone. We'll be pulling for ya!

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The CSA has an advertisement running in "Living Without" magazine which shows a group of people, black and white and asks the question something like "are you the 1 in 133"? So the CSA is putting the fact forward that Blacks can get celiac disease.

A lot of people don't know that the only other nationality to have a type of Sickle Cell Anemia are Italians (of which I am of this descent as well). That doesn't mean I reject it because it's a "black" disease. It makes me want to know more about it because my family is then more at risk for it.

Well let's then kick around some ideas on how blacks can be made more aware of celiac and not dismiss it as a "white" only disease....

I hate to go back to this again as it's been posted numerous times on this board, but perhaps Oprah can lend assistance to all Celiacs and have a show on it (it's been mentioned about Oprah on this board now for a few years, many board members wrote to her and suggested a show on celiac disease). Maybe now it's time for her to lend this assistance.

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The CSA has an advertisement running in "Living Without" magazine which shows a group of people, black and white and asks the question something like "are you the 1 in 133"? So the CSA is putting the fact forward that Blacks can get celiac disease.

A lot of people don't know that the only other nationality to have a type of Sickle Cell Anemia are Italians (of which I am of this descent as well). That doesn't mean I reject it because it's a "black" disease. It makes me want to know more about it because my family is then more at risk for it.

Well let's then kick around some ideas on how blacks can be made more aware of celiac and not dismiss it as a "white" only disease....

I hate to go back to this again as it's been posted numerous times on this board, but perhaps Oprah can lend assistance to all Celiacs and have a show on it (it's been mentioned about Oprah on this board now for a few years, many board members wrote to her and suggested a show on celiac disease). Maybe now it's time for her to lend this assistance.

Hey I knew about Sickle Cell and Italian ethnic subgroups. ;) I don't know that blacks are dismissing it as a "white" only disease. I know I certainly didn't when I learned of it. However there is still a lot of language out there that can lead one to that implication. And that implication can have an affect on not only the black community, but *doctors* and other social ethnic groups as well. Which is what I think the OP was getting at.

I think in my prior post I got a little tangential, but I think we agree that we just need to raise awareness in general for everyone. I just wanted to push back on the whole idea that socially constructed racial groups based on appearances and locale have any bearing on the reality of a persons genetic makeup. (Well it has some bearing, but not nearly as much as we like to think).

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Hey I knew about Sickle Cell and Italian ethnic subgroups. ;)

Actually I was thinking of my father's sister who is 100% Italian....I'd bet a week's pay that she doesn't know about Italians and Sickle cell.... My hard-headed Italian relatives, that unless it happens to them, it doesn't exist.....even if someone in my Italian side of family had it, I'd never know because they refuse to talk about any of them having any disease. I had to pry it out of my grandmother and find out that she had Diabetes Type 2. When my grandfather had congestive heart failure we kind of surmised it was that, but when asked the family replied "There's nothing wrong with him" and he was swollen with water in his legs.

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Celiac disease has long been described as a "European" disease. However, the below information does not surprise me in the least.

http://www.ncbi.nlm.nih.gov/pubmed/11436476

Additional links for information...

http://thriveglutenfree.com/category/celiac-disease/

http://www.celiachia.it/news/page33.html

Carlo Catassi--Istituto di Clinica Pediatrica, Universit

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Okay. So while I was looking up info on celiac disease, I realized that almost every site i've referred to, it explains that it predominately affects White Europeans. What bothered me the most is that I am half African American and half European, and I still managed to get this disease. Hehehe. So much for that. But what has really been bugging me is that there is so few support groups, sites, or anything that raises the awareness of celiac disease in African Americans and other race groups for that matter.

I would have never even known about this disease if my boyfriend didn't suggest that I might have had it. I would have never gotten tested. My twin brother was diagnosed with Chrons Disease 5 years ago, I think he has Celiac disease. Infact, I think everyone in my family has it. But when I tried to explain to them that they might have it, they kept telling me that this was my problem and to not include them. And that they personally think the disease doesn't even exhist.

This is not only affecting me but I feel its affecting African Americans pretty negatively. :( What do you think?

Africans have celiac disease... It isn't a purely european disease..

Most of the African american population are of mixed lineage anyway..

If you think logically..

The fact is that the romans introduced wheat to europeans..but the wheat has been introduced in other societies as well.

European explorers didn't stop eating wheat in europe..They brought it with them..wherever they went..

McDonalds is expanding across the world at record rate with wheat buns.. ;-)

Eastern & other african populations traditionally ate other grains... Not wheat..

http://www.wrongdiagnosis.com/c/celiac_dis...ats-country.htm

Here is a chart of celiac disease sufferers..including africa

Celiac Disease in Northern Africa (Extrapolated Statistics)

Egypt 304,469 WARNING! (Details) 76,117,4212

Libya 22,526 WARNING! (Details) 5,631,5852

Sudan 156,592 WARNING! (Details) 39,148,1622

Celiac Disease in Western Africa (Extrapolated Statistics)

Congo Brazzaville 11,992 WARNING! (Details) 2,998,0402

Ghana 83,028 WARNING! (Details) 20,757,0322

Liberia 13,562 WARNING! (Details) 3,390,6352

Niger 45,442 WARNING! (Details) 11,360,5382

Nigeria 71,001 WARNING! (Details) 12,5750,3562

Senegal 43,408 WARNING! (Details) 10,852,1472

Sierra leone 23,535 WARNING! (Details) 5,883,8892

Celiac Disease in Central Africa (Extrapolated Statistics)

Central African Republic 14,969 WARNING! (Details) 3,742,4822

Chad 38,154 WARNING! (Details) 9,538,5442

Congo kinshasa 233,268 WARNING! (Details) 58,317,0302

Rwanda 32,954 WARNING! (Details) 8,238,6732

Celiac Disease in Eastern Africa (Extrapolated Statistics)

Ethiopia 285,346 WARNING! (Details) 71,336,5712

Kenya 131,928 WARNING! (Details) 32,982,1092

Somalia 33,218 WARNING! (Details) 8,304,6012

Tanzania 144,283 WARNING! (Details) 36,070,7992

Uganda 105,561 WARNING! (Details) 26,390,2582

Celiac Disease in Southern Africa (Extrapolated Statistics)

Angola 43,914 WARNING! (Details) 10,978,5522

Botswana 6,556 WARNING! (Details) 1,639,2312

South Africa 177,793 WARNING! (Details) 44,448,4702

Swaziland 4,676 WARNING! (Details) 1,169,2412

Zambia 44,102 WARNING! (Details) 11,025,6902

Zimbabwe 14,687 WARNING! (Details) 1,2671,8602

All of these african people were affected, because they consumed western diets..

I am sure the individuals/ communities that stuck to traditional diets have been unaffected by celiac disease...

Don't feel bad about celiac disease...it affects many races...equally.. ;)

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It's kind of odd that Europeans are more prone to it. I'm not sure they mean genetically, although that is hard to explain. I assume europeans have been grinding grain longer, or just as long as, anyone else. I posted elsewhere, but reading Michael Pollan's "In Defense of Food," he says that as the "western diet" makes its way around the globe, with it's heavily modified and processed wheat flour, that plenty of diseases follow it. So, it may be more common because of diet, or any number of issues, although genetics clearly play a part, it would be odd for europeans to develop some sort of immunological resistance to wheat and not other races.

For instance, sickle cell is allegedly more common among africans because the same gene carries a resistance to malaria. So unless the celiac genes carry some benefit, one would have thought they would have died out long ago from failure to thrive. But I think the main thing is, people just never ate as much protein filled wheat as we eat. It apparently makes good filler.

But yea, I'm not saying Atkin's is a great diet, but people do it, to lose weight. I bet if you put forth a gluten free diet as a health benefit with a weight loss component, people generally want that. If you want your family to try it, tell them it's a new fad diet, those are much more popular than diseases. ;)

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I am an African American with Celiac Disease...I was shocked to a point about the news concerning this disease. However, my great grandmother was white. I am glad to know that I am not alone.

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This is an old discussion but it is interesting.

I am gluten intolerant and I am African originally from Eastern Africa. Our people don't have awareness of this disease but it doesnt mean it is present. For the last two years, I have been talking to friends and family about celiac disease and since then, I am learning it might under diagnosed in some African subgroups. Now, I know celiac disease is present in my ethnic community: people tell me oh my cousin my niece my friends friend has it. My sister back home now can empathize with her student who has it...she had no clue about it before. Just like celiac disease is more prevalent among North-Western Europeans, there must be some African regions where the rates are higher. From what I have read in books, Sahraaouis in N-W Africa have higher rate than N-W Europeans.

But when you heard that 95% of Americans and Canadians don't know they are gluten intolerant, then you can't blame Africans or African Americans who believe celiac disease is a White man disease. Among my friends, I have those who wonder what kind of "curse" I must carry for having caught celiac disease and the other who became recently familiar because a family member issues.

I had to fight with my doctor so that he could send me for the test and he knew I was paying not Health Canada but in his brain Africans have sickle cell not Celiac. When he was explaining to me that I was negative for the test sickle cell that I didn't ask for, he said maybe all my ancestry wasn't African ahahahah.

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Have you seen the wiki link on the HLA - DQ8 gene carriers ? They are adding more and more details to it all the time about which ethnic groups on which continents are carriers.

http://en.wikipedia.org/wiki/HLA-DQ8

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I met a person with celiac at one of our local groups who is African-American. Also, it seems like I read an article a while back saying there are more ethnicities having or potentially having celiac than was once believed. I think they mentioned Asian people having celiac. It is not just a caucasian person's disease anymore. Hooray? Sounds like a commerical. I guess we got's us an equal opportunity disease. :)

I think the truth is the medical establishment is not very smart about celiac disease yet, and they have a long way to go before they get a real understanding of it. It wasn't all that long ago they thot children outgrew celiac as they matured. Big gong sound here, totally wrong! Among a long list of wrong ideas about celiac that are just slowly changing now.

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Have you seen the wiki link on the HLA - DQ8 gene carriers ? They are adding more and more details to it all the time about which ethnic groups on which continents are carriers.

http://en.wikipedia.org/wiki/HLA-DQ8

That's very interesting. I can understand they are adding more information on new groups. Here is a website I found while goggling on sickle cell*

http://www.understandingrace.org/humvar/race_humvar.html

that link shows that the genetic variations existing in Europe and Asia are already present in Africa but the later has other variations not found in Asia Europe. And these variations are not due to European migration to Africa. Genes go far beyond our understanding of race. Africans who have 0 European blood have gluten intolerance (here I am!) and maybe it is more prevalent in those countries where people have increased their wheat flour intake.

I so wish wheat flour was less used like when I was growing up but more and more countries are adopting the European grain instead of using their own stuff like sorghum teff tapioca rice.

*according to this site sickle cell is present in areas where malaria used to be present long time ago and it doesnt always match the new map of malaria...there are areas of Africa where people haven't developped resistance to malaria while people in India Middle Eeast or Greece have some sort of Sickle cell...I am not sure of the name.

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This is fascinating. I learn more here every day. I wish the rest of the internet was filled with this much intelligent, passionate and compassionate discussion of things that really matter. Just had to throw that in here. Thanks for the education.

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I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
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