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 With Celiac Too?


BellaVoce

Recommended Posts

BellaVoce Newbie

First of all, I know that celiac disease amongst African Americans is supposedly low (or maybe just poorly diagnosed?). I am a 32 yr old female. I had a surgery on my ankle a couple of years ago (fell off my stupid, crazy horse) and ever since about that time (maybe it started a little before), I've noticed a ton of weird symptoms that seem to be consistent with a gluten intolerance. Eating has become a really stressful experience for me. I was feeling bad (very, very bloated to the point where I would feel something similar to nausea, but not quite the same thing) after EVERY meal. Stomach cramps, weird gas (smelled horrible sometimes! Like REALLY BAD), mucous-y sticky stool. I also started to feel tired all the time... especially lately. Sleeping was NO problem for me. I was also getting many more colds than a relatively "healthy" person should have (like 3 or 4 a year. To me, that seems excessive). I went to the doctor after what sounded like a "virus". I had actually been quite sick last year for a few days with horrible diarrhea, but this year around March, I had a horrible time as well. I am about 5'1 and I have always been very petite, but I got down to about 97lbs which seems very thin to me even though I was eating lot of fatty foods.

The last visit to the doctor's, I mentioned I suspected it could possibly be a gluten intolerance and my doctor said it was probably unlikely, but to as an experiment, cut out wheat/gluten/dairy. Well, I have been off dairy for a while and cutting out gluten (although I admit I have not been 100% disciplined) has made a difference. I still have some bad days (maybe I've had one or two in the two weeks I've been gluten-free), but I feel much better. Much more energy, have gained some weight and have less stomach upset. I don't know if this is psychosomatic or if gluten is really a problem for me. I am scheduled to see a specialist in a couple of weeks and I am trying to avoid an endoscopy. How accurate or inaccurate are blood screens? My grandfather, I know for sure was lactose intolerant, but I've heard that occurs more with age. My dad has always had a "sensitive stomach", but he has never been screened for celiac.

Sorry if this post is rambling or disjointed. I have so many questions. :huh:


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



Celiac.com Sponsor (A8-M):



lonewolf Collaborator

Welcome! I think you've probably found your answer. I don't think that gluten intolerance or Celiac Disease is ruled out in any racial group.

I hope you stick around - feel free to ask lots of questions!

nasalady Contributor
First of all, I know that celiac disease amongst African Americans is supposedly low (or maybe just poorly diagnosed?).

YES, African Americans can have celiac disease! Please read the posts and comments at the following links:

Open Original Shared Link

Open Original Shared Link

Besides, what is your doctor thinking, anyway! Doesn't he realize that many African-Americans also have some European ancestry?

My two toddlers (my biological grandchildren, adopted children) are half African-American because of their biological father. He told me his brother had both MS and celiac disease and died fairly young.

Both of my little ones have gluten issues...Emma has the HLA DQ2 celiac genetic marker which means she is pre-disposed to developing celiac disease. She is very underweight but since I put the entire family on the gluten free diet she has begun to gain weight.

Your symptoms are telling you what you need to know....listen to your body.

Best of luck to you!

JoAnn

LuvMoosic4life Collaborator

Just thought I would mention if you want to get tested you should be on a diet that contains gluten, otherwise the anibodies wont show up in the bloodwork! I went gluten free BEFORE going to the doctor to get tested...I'm wishing I could re-wind time now!!!!

good luck with everything!

BellaVoce Newbie
Just thought I would mention if you want to get tested you should be on a diet that contains gluten, otherwise the anibodies wont show up in the bloodwork! I went gluten free BEFORE going to the doctor to get tested...I'm wishing I could re-wind time now!!!!

good luck with everything!

Thanks so much! I have re-introduced (much to my disliking) gluten back into my diet in small amounts because if I do have celiac disease, I would like to test positive. I had a flour tortilla (even though the waitress insisted it was corn. She must think I'm a moron), some cookies yesterday and I had some bread today. Man, those cookies were good though! I was never much of a bread person, but I'm going to enjoy it while I can (I guess :huh: )

Thanks to everyone for all the replies. I feel so welcome :) I feel like I am obsessed with this gluten thing, but it just explains so many symptoms. I was also diagnosed a few years ago with having elevated prolactin levels. I had 2 MRIs on my brain because usually, they are caused by a prolactinoma growing on the pituitary, but they never found anything, so they said; "We don't know why you are hyperprolactinemic, here, have some drugs.". The drugs got the levels down to some degree, but I never felt fully, fully better. And now I'm reading today that there is a link between celiac disease and elevated prolactin. It all just seems like too good of a coincidence. I'm convinced my mom may have a gluten problem due based on her medical history as well.

I don't know anything about this GI I am going to see on the 18th, but I hope he's good. I wonder if he'll be open to the possibility of what I would be suggesting. Even if I don't get a positive celiac disease diagnosis, I may go gluten-free anyway...just because of the prolactin thing. You never know...

BellaVoce Newbie
YES, African Americans can have celiac disease! Please read the posts and comments at the following links:

Open Original Shared Link

Open Original Shared Link

Besides, what is your doctor thinking, anyway! Doesn't he realize that many African-Americans also have some European ancestry?

My two toddlers (my biological grandchildren, adopted children) are half African-American because of their biological father. He told me his brother had both MS and celiac disease and died fairly young.

Both of my little ones have gluten issues...Emma has the HLA DQ2 celiac genetic marker which means she is pre-disposed to developing celiac disease. She is very underweight but since I put the entire family on the gluten free diet she has begun to gain weight.

Your symptoms are telling you what you need to know....listen to your body.

Best of luck to you!

JoAnn

Thank you so much for this info! I appreciate it. It is pretty much disregarded that most african-americans have European ancestry as well. I definitely do (and am proud of my Irish part)!

lizard00 Enthusiast

I am continually baffled by the fact that people still think this way. What's the old expression... 'the sun never set(s) on the British empire"... considering most of Africa has been colonized at some point by a European country, I would think it obvious that a lot of African Americans would have European descent. But then again, my doc asked me if I had any European in my background. My response was "I am white and live in America. Of course I do." He laughed. :lol:

I do remember reading just recently that while celiac disease was thought to be a European disease for many years, it seems to cross all races. (As another poster already said)

Anyway, hopefully you have found your answer and can get to the bottom of it so you can get better!! :)


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,161
    • Most Online (within 30 mins)
      7,748

    DAR girl
    Newest Member
    DAR girl
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • trents
      A lot to think about here. Does anyone have any recommendations for third party laboratories that will do full panel celiac screens private pay in the U.S.?
×
×
  • Create New...