Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

African Americans And Celiac Disease


Bravie

Recommended Posts

Bravie Apprentice

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



gfp Enthusiast
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?

debmidge Rising Star
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.."

Lemonsieur Newbie
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:

Open Original Shared Link

Open Original Shared Link

home-based-mom Contributor
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!

debmidge Rising Star

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.

Lemonsieur Newbie
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).


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



debmidge Rising Star
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.

  • 1 month later...
SAN-Tiger Newbie

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

Open Original Shared Link

Additional links for information...

Open Original Shared Link

Open Original Shared Link

Carlo Catassi--Istituto di Clinica Pediatrica, Universit

SAN-Tiger Newbie

I think celiac is under-tested in minority groups. If they don't test for it, they won't find it! Wherever there is gluten, there will be gluten intolerence....

check out this article....

Open Original Shared Link

"'The global village of celiac disease'

  • 8 months later...
Ms. Skinny Chic Explorer
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..

Open Original Shared Link

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.. ;)

coldnight Apprentice

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. ;)

  • 1 year later...
faithbuilder Newbie

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.

  • 7 months later...
Nadia2009 Enthusiast

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.

Takala Enthusiast

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.

Open Original Shared Link

GFinDC Veteran

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.

Nadia2009 Enthusiast

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.

Open Original Shared Link

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*

Open Original Shared Link

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.

chasbari Apprentice

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to VinnieVan's topic in Introduce Yourself / Share Stuff
      7

      Question

    2. - fritz2 replied to VinnieVan's topic in Introduce Yourself / Share Stuff
      7

      Question

    3. - Tuba1971 replied to Pat B's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      FDA says that most drugs are gluten-free???

    4. - PA Painter replied to PA Painter's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      NCGS Diagnosis

    5. - Viroval replied to Nicbent35's topic in Related Issues & Disorders
      13

      3 year old gluten intolerance?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,754
    • Most Online (within 30 mins)
      7,748

    Adair Robertson
    Newest Member
    Adair Robertson
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.2k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      endomys is, aka, "EMA" and is a celiac disease antibody test. It was negative. gliaiga is, aka, IGP-IGA, is also a celiac disease antibody test. It was negative. TRANSGLUA is, aka, TTG-IGA, another celiac disease antibody test. It was in normal range. tranigg is, aka, TTG-IGG, still another celiac disease antibody test. It was high, or above normal range. immaqnt is, I believe, what is also known as "total IGA" and at 160, looks to be in normal range since it wasn't flagged otherwise. This is a test for IGA deficiency. If someone is IGA deficient then all other IGA test scores cannot be trusted as being accurate. You are not IGA deficient. Here is a primer explaining the various tests that can be used to diagnose celiac disease: Celiac disease blood antibody testing is not valid when someone has been gluten free or eating low gluten for a significant period of time. The IGA tests are more specific for celiac disease than are the IGG tests but your slightly high TTG-IGG test score could reflect that you have celiac disease and have had low level exposure to gluten over time or a recent exposure. You could also have NCGS (Non Celiac Gluten Sensitivity).
    • fritz2
      I'm 70, had gut issues my whole life.  15 years ago my grandchild was diagnosed with celiac.  Since I had a constant either constipation or diarrhea and what the doctors thought was fibromyalgia and other issues I decided to see what happens if I quit gluten.  I got a lot better.  BTW, 30 years ago I had head & neck cancer, the radiation destroyed my thyroid.  I suffer from chronic fatigue and have to take synthroid. A few months ago, I bought a bottle of Ice water, I was thirsty and all they had at the motel was this.  It said sugar free and had a bunch of vitamins.  I couldn't read the fine print so I thought it's safe, so I bought several bottles (it had sucralose and maltodextrin in it).  I thought one per day would be ok and it absolutely was delicious.  In the meantime, my wife found some links and bratwurst for breakfast, we didn't know it had wheat in it and we picked up a half gallon of her favorite ice cream and unknown to us they had changed the formula and added wheat.  I had several meals and several bottles before I realized something was wrong.  Did all the sugar add to the issue?   In a day, I wasn't feeling well, my joints started swelling.  In a couple days, I thought sure I had gout in both hands.  In three days, I needed help to stand up or sit down, the pain was extreme.  I went to the emergency room.  They took blood and gave me cholchistine to alleviate the gout, it did nothing.  I didn't get a report on the test.  The next week the doctor ordered more blood tests and it's all acronyms but a couple items on celiac were listed as high.  The nurse I asked about the report had no clue and the RA was negative.  This has been ongoing for over a month and only now am I able to use my hands, but it's painful. Under the Celiac labs headline it says:  endomys-Negat gliaiga-  5 gliaigg-  1 TRANGLUA -3 tranigg-  8  (high) immaqnt-  160 Rheumatoid factor <12 Thyroid stimulating hormone: 2.81 Does anyone know what this means?
    • Tuba1971
      I had been glutened from somewhere since I pretty much make all my food from scratch. I had to have an endoscopy which should gluten damage, had blood work which also indicated high gluten. 4 years ago when I had these tests my gluten levels were all in good alignment. It comes down to my levothyroxin accord brand that must have gluten in it. I switched to synthroid 3 weeks ago and have been doing much better and am able to sleep at night again.
    • PA Painter
      That somes it up. It is worth mentioning GliadinX does not reduce symptoms for me at all. I also react to banana, avacado, cabbage, Oatmeal, and pecans among other things. If anyone else out there is like me, I had to eliminate gluten and all processed food before I could start to heal. I wish I had know this a long time ago. Thanks for the acknowledgement.
    • Viroval
      Thanks for sharing this detailed explanation. It’s really helpful to understand the differences between celiac disease and gluten sensitivity. I had no idea that gluten withdrawal could feel similar to addiction, and it’s great to have that context when considering how it affects people. It’s also good to know how important it is to continue eating gluten for accurate testing. I’ll keep all of this in mind!
×
×
  • Create New...