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African American

Healed

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Healed Newbie
Healed
Posted

My prometheus celiac panel results revealed very high indicating positive for celiac disease. My MD disputes the results because I am African American. I decided to go on a celiac diet(100 %). I feel somewhat better although not completely. Question: Do African-Americans have celiac disease and if so what did you have to do to get a true diagnosis. Please help!

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FMcGee Explorer
FMcGee
Posted

African Americans definitely get celiac disease. It is pretty evenly distributed across every ethnic and racial group (with the possible exception of the non-diasporic Japanese, who seem to get it less). Your doctor doesn't sound like s/he's that up to date on things. If I were you, I'd consider going back on gluten and getting an endoscopy, but that's entirely a personal call. At least, I think you should take your blood work to a different GI doc.

Lisa Mentor
Lisa
Posted
My prometheus celiac panel results revealed very high indicating positive for celiac disease. My MD disputes the results because I am African American. I decided to go on a celiac diet(100 %). I feel somewhat better although not completely. Question: Do African-Americans have celiac disease and if so what did you have to do to get a true diagnosis. Please help!

Open Original Shared Link

"My prometheus celiac panel results revealed very high indicating positive for celiac disease. My MD disputes the results because I am African American. "

There is no dispute for a positive celiac panel other than your doctor's ignorance. Consider yourself diagnosed.

Reading here and posting can help you navigate the gluten free world. We are here to help.

Welcome to the Club!

nasalady Contributor
nasalady
Posted
My prometheus celiac panel results revealed very high indicating positive for celiac disease. My MD disputes the results because I am African American. I decided to go on a celiac diet(100 %). I feel somewhat better although not completely. Question: Do African-Americans have celiac disease and if so what did you have to do to get a true diagnosis. Please help!

My grandkids' biological father is African American, and he says his brother (who is now deceased) had both MS and celiac disease. Which would mean that the kids have celiac on both sides of the family because I have it too.

African Americans can have celiac disease.

You might want to see a different doctor....one who's a little better informed!

sarahk47 Newbie
sarahk47
Posted
My prometheus celiac panel results revealed very high indicating positive for celiac disease. My MD disputes the results because I am African American. I decided to go on a celiac diet(100 %). I feel somewhat better although not completely. Question: Do African-Americans have celiac disease and if so what did you have to do to get a true diagnosis. Please help!

African Americans are not exempt from celiac. Since you're not feeling completely better on the gluen-free diet, you might consider cutting out dairy for a while as well to see if that helps. According to the NIH, up to 80% of African Americans are lactose intolerant. So you could be both celiac and LI.

If your blood results are significantly positive, you have celiac. False positives are rare. You can start eating gluten again and get the biopsy to get an official diagnosis, but I did the gluten challenge and regret it wholeheartedly (before I went back on gluten for the biopsy, I could eat anything except gluten, and I came out of the gluten challenge with intolerances to lactose, eggs, and corn in addition to the gluten). I don't recommend it to anyone. I do recommend going to a doctor who is up-to-date on celiac.

Best of luck finding your answers!

Healed Newbie
Healed
Posted
  • Author
African Americans definitely get celiac disease. It is pretty evenly distributed across every ethnic and racial group (with the possible exception of the non-diasporic Japanese, who seem to get it less). Your doctor doesn't sound like s/he's that up to date on things. If I were you, I'd consider going back on gluten and getting an endoscopy, but that's entirely a personal call. At least, I think you should take your blood work to a different GI doc.

Thanks! I will definitely stay on a gluten free diet and I will find a new MD

Healed Newbie
Healed
Posted
  • Author
Open Original Shared Link

"My prometheus celiac panel results revealed very high indicating positive for celiac disease. My MD disputes the results because I am African American. "

There is no dispute for a positive celiac panel other than your doctor's ignorance. Consider yourself diagnosed.

Reading here and posting can help you navigate the gluten free world. We are here to help.

Welcome to the Club!

Thank You!

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Healed Newbie
Healed
Posted
  • Author
My grandkids' biological father is African American, and he says his brother (who is now deceased) had both MS and celiac disease. Which would mean that the kids have celiac on both sides of the family because I have it too.

African Americans can have celiac disease.

You might want to see a different doctor....one who's a little better informed!

Thank You!

Healed Newbie
Healed
Posted
  • Author
African Americans are not exempt from celiac. Since you're not feeling completely better on the gluen-free diet, you might consider cutting out dairy for a while as well to see if that helps. According to the NIH, up to 80% of African Americans are lactose intolerant. So you could be both celiac and LI.

If your blood results are significantly positive, you have celiac. False positives are rare. You can start eating gluten again and get the biopsy to get an official diagnosis, but I did the gluten challenge and regret it wholeheartedly (before I went back on gluten for the biopsy, I could eat anything except gluten, and I came out of the gluten challenge with intolerances to lactose, eggs, and corn in addition to the gluten). I don't recommend it to anyone. I do recommend going to a doctor who is up-to-date on celiac.

Best of luck finding your answers!

Thank You!

Takala Enthusiast
Takala
Posted

Hello, Healed !

Open Original Shared LinkOpen Original Shared Link

While somebody has been playing mightily with this article since the last time I looked at it, it still has charts showing how one of the genes associated with celiac disease and gluten intolerance is found in various ethnic groups worldwide, including Africa. About 30% of the world's population carries the genes, but having it doesn't mean you automatically get it, it is thought it needs to be triggered by infection or other stress. About 1 in 130 people have celiac/gluten intolerance, and most are misdiagnosed, or have it in a form that is silently doing damage until something else goes wrong.

I would have looked at the guy and asked him, poker faced, just which planet did the aliens drop us off from, since according to him, humans didn't originate in Africa. I am of mixed ancestry and as the joke goes, it's the "golden cross" for auto immune disease disorders- I haven't done the genetic testing yet but there is almost no way I have missed out with this particular blend. :ph34r:

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      @knitty kitty I see, thank you!!  Yes, basically the biopsy just said "normal villous architecture."  It didn't give any kind of Marsh score at all, but it sounds like it would be a 0 based on the biopsy report, which is why he's saying it's Latent or Potential celiac.  It's just weird because I know in Europe if I was a child, they wouldn't even do the biopsy, so how does this system make any sense?? I have had an A1c and it's normal.  I do know that I have insulin resistance, however, so there's that. Wow, thank you for all this information!!!  I have a lot of reading to do!
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      That is one issue but the bigger issue may be the human tendency to rationalize it all away without an official diagnosis such that you keep falling off the gluten free bandwagon. But there is the option of going for the gluten challenge in a more robust way and getting retested.
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