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Could I Have Celiac? I'm African-American.


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16 replies to this topic

#1 andyeight1

 
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Posted 19 July 2012 - 08:30 AM

--which would make that extremely unlikely, but possible as there have been cases.

I'm 20. For my entire life, I have had "undiagnosed" stomach problems. When I was younger, about 4 or 5, my doctor threw Prevacid at me. I had to take it twice a day before meals. It made things bearable, but I always just felt....sick after eating. My doctor's have dismissed IBS, Chron's, etc.

My stomach problems have grown worse, since then, but only intermittently. Whenever I drink vodka or beer (wheat based) at college, I get extremely sick. I'm talking vomiting, sick for days after. However, on a number of occasions (I'm in college, okay!) at friends' birthdays, I have downed bottles upon bottles of wine, champagne, and tequila, and my stomach feels a-okay.

I usually start off my day with an english muffin and eggs/sausage/some protein. I eat the eggs and sausage and feel fine. Like clockwork, after I eat the english muffin, or the toast, I get stomach cramps.

A month or so ago, I did the first part to the South Beach Diet (the part where you eliminate all bread), and I felt like a million bucks. I didn't lose any weight (that's another story...) but I was much less bloated in my face and stomach. The second I ate a piece of white bread, my stomach got upset.

So, I went to the doctor for it, and they asked me to monitor my stools based on what I eat. TMI!

I noticed that when I was eating no bread (the south beach diet) my stools were normal looking. On days that I ate bread (specifically, pepperoni pizza for dinner, french bread with my salad for lunch), my stools had stringy white stuff all through out.

I don't know if my doctor is planning on testing me for Celiac. Should I ask? I know I sound paranoid...but I felt SO healthy when I was just eating meat, veggies, and cheese.
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#2 taterhart

 
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Posted 19 July 2012 - 09:39 AM

I don't have any definitive answers, as I'm new to this too, but I would say that if you have ALWAYS felt bad except for the time that you ate no bread, that is an answer. Whether that is celiac, I don't know. We have foregone getting a diagnosis from a doctor and have opted to do an elimination diet. It's only been 6 days, but I feel like I have seen/felt enough to know that something is going on. Your own body is the best diagnostic tool there is. Trust your instincts when it comes to your health!
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#3 andyeight1

 
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Posted 19 July 2012 - 09:59 AM

I don't have any definitive answers, as I'm new to this too, but I would say that if you have ALWAYS felt bad except for the time that you ate no bread, that is an answer. Whether that is celiac, I don't know. We have foregone getting a diagnosis from a doctor and have opted to do an elimination diet. It's only been 6 days, but I feel like I have seen/felt enough to know that something is going on. Your own body is the best diagnostic tool there is. Trust your instincts when it comes to your health!



Thanks for the help!
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#4 frieze

 
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Posted 19 July 2012 - 11:09 AM

1) Lactose intolerance is fairly common in the AA community, if my memory serves. What is one of the big sequelae of celiac....hmmm
2) Most of us in this country can't, with any real certainty state we are not of mixed race.
I betcha, you belong here.
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#5 Mnicole1981

 
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Posted 19 July 2012 - 11:55 AM

--which would make that extremely unlikely, but possible as there have been cases.

I'm 20. For my entire life, I have had "undiagnosed" stomach problems. When I was younger, about 4 or 5, my doctor threw Prevacid at me. I had to take it twice a day before meals. It made things bearable, but I always just felt....sick after eating. My doctor's have dismissed IBS, Chron's, etc.

My stomach problems have grown worse, since then, but only intermittently. Whenever I drink vodka or beer (wheat based) at college, I get extremely sick. I'm talking vomiting, sick for days after. However, on a number of occasions (I'm in college, okay!) at friends' birthdays, I have downed bottles upon bottles of wine, champagne, and tequila, and my stomach feels a-okay.

I usually start off my day with an english muffin and eggs/sausage/some protein. I eat the eggs and sausage and feel fine. Like clockwork, after I eat the english muffin, or the toast, I get stomach cramps.

A month or so ago, I did the first part to the South Beach Diet (the part where you eliminate all bread), and I felt like a million bucks. I didn't lose any weight (that's another story...) but I was much less bloated in my face and stomach. The second I ate a piece of white bread, my stomach got upset.

So, I went to the doctor for it, and they asked me to monitor my stools based on what I eat. TMI!

I noticed that when I was eating no bread (the south beach diet) my stools were normal looking. On days that I ate bread (specifically, pepperoni pizza for dinner, french bread with my salad for lunch), my stools had stringy white stuff all through out.

I don't know if my doctor is planning on testing me for Celiac. Should I ask? I know I sound paranoid...but I felt SO healthy when I was just eating meat, veggies, and cheese.


I was told by a gastroenterologist that Celiac disease is rarely seen in African-Americans, and I even tested negative in blood and biopsy, of course. I am severely lactose intolerant, had just about all the symptoms. Since you're African-American, you'll probably just get the IBS diagnosis. Most African-Americans are descend from Caucasian blood. I have three White great-great-great grandmothers, two on my dad's side, and one on my mother's side. It's sad that we live in a world where a diagnosis of a disease is based on your race. My mother has "IBS'. Last time I checked, IBS was not a genetic disease.
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#6 andyeight1

 
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Posted 19 July 2012 - 12:51 PM

^ Thank you for replying to me. Interestingly enough, my Father has the same problems, will culminated in a diagnosis of.....nothing. It's nothing, the doctors say. Not IBS, not Chrohn's, just a "bad stomach". He ended up going to a wholistic doctor that put him on a custom pro-biotic diet and he feels a lot better. This pro-biotic diet consists of drinking almond milk instead of regular milk, and host of other things which sound suspiciously like what like one of my friends (who has celiac disease) eats.

But anyways, are you suggesting that I don't bring this up point blank with my doctor? I think I would like to be tested, but I feel stupid asking, as again, my only proof is how I feel, and a few discussions with my celiac disease friend.
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#7 taterhart

 
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Posted 19 July 2012 - 01:46 PM

Maybe you can find a doctor who specializes in this in your area, or maybe a naturopath or homeopathic doctor. Or maybe even a nutritionist. It is my understanding that these kind of doctors are more likely to identify complaints with celiac or gluten issues.
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#8 frieze

 
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Posted 19 July 2012 - 02:20 PM

^ Thank you for replying to me. Interestingly enough, my Father has the same problems, will culminated in a diagnosis of.....nothing. It's nothing, the doctors say. Not IBS, not Chrohn's, just a "bad stomach". He ended up going to a wholistic doctor that put him on a custom pro-biotic diet and he feels a lot better. This pro-biotic diet consists of drinking almond milk instead of regular milk, and host of other things which sound suspiciously like what like one of my friends (who has celiac disease) eats.

But anyways, are you suggesting that I don't bring this up point blank with my doctor? I think I would like to be tested, but I feel stupid asking, as again, my only proof is how I feel, and a few discussions with my celiac disease friend.

okay, young'un...lol, a little consumer education....you are the customer, you explain to the doc what you NEED done. Respectfully of course.
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#9 jerseyangel

 
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Posted 19 July 2012 - 03:12 PM

--which would make that extremely unlikely, but possible as there have been cases.

I'm 20. For my entire life, I have had "undiagnosed" stomach problems. When I was younger, about 4 or 5, my doctor threw Prevacid at me. I had to take it twice a day before meals. It made things bearable, but I always just felt....sick after eating. My doctor's have dismissed IBS, Chron's, etc.

My stomach problems have grown worse, since then, but only intermittently. Whenever I drink vodka or beer (wheat based) at college, I get extremely sick. I'm talking vomiting, sick for days after. However, on a number of occasions (I'm in college, okay!) at friends' birthdays, I have downed bottles upon bottles of wine, champagne, and tequila, and my stomach feels a-okay.

I usually start off my day with an english muffin and eggs/sausage/some protein. I eat the eggs and sausage and feel fine. Like clockwork, after I eat the english muffin, or the toast, I get stomach cramps.

A month or so ago, I did the first part to the South Beach Diet (the part where you eliminate all bread), and I felt like a million bucks. I didn't lose any weight (that's another story...) but I was much less bloated in my face and stomach. The second I ate a piece of white bread, my stomach got upset.

So, I went to the doctor for it, and they asked me to monitor my stools based on what I eat. TMI!

I noticed that when I was eating no bread (the south beach diet) my stools were normal looking. On days that I ate bread (specifically, pepperoni pizza for dinner, french bread with my salad for lunch), my stools had stringy white stuff all through out.

I don't know if my doctor is planning on testing me for Celiac. Should I ask? I know I sound paranoid...but I felt SO healthy when I was just eating meat, veggies, and cheese.

Hi Andy, and welcome :)

Sounds to me what you have already discovered--you have a problem with gluten. You can go a couple ways here--go gluten free and never look back, or if you would like to be tested, keep eating a regular gluten diet and directly ask your doctor to run the Comprehensive Celiac Panel on you. Again, you can't be gluten free or even gluten lite and expect accurate results. The testing is also not without the possibility of a false negative.

There is still (in my opinion) a lot they don't know about Celiac. To dismiss the matter simply because of race does not make sense to me--if a formal diagnosis is important to you, then by all means tell the doctor you want the testing. He/she works for you and your symptoms mean something is amiss.

Good luck and keep us posted.
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#10 Mnicole1981

 
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Posted 19 July 2012 - 05:47 PM

^ Thank you for replying to me. Interestingly enough, my Father has the same problems, will culminated in a diagnosis of.....nothing. It's nothing, the doctors say. Not IBS, not Chrohn's, just a "bad stomach". He ended up going to a wholistic doctor that put him on a custom pro-biotic diet and he feels a lot better. This pro-biotic diet consists of drinking almond milk instead of regular milk, and host of other things which sound suspiciously like what like one of my friends (who has celiac disease) eats.

But anyways, are you suggesting that I don't bring this up point blank with my doctor? I think I would like to be tested, but I feel stupid asking, as again, my only proof is how I feel, and a few discussions with my celiac disease friend.


I would definitely ask the doctor to test you. There needs to be more awareness about this disease in the African-American community. If you test positive, it may influence someone in your family dealing with the same issues to get tested.
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#11 GFinDC

 
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Posted 20 July 2012 - 04:13 PM

Hi Andy,

You can ask the doctor to run the celiac panel on you. They just take a little blood and send it to a lab for the antibody tests. There is a possibility of false negatives so it's a good idea to trial the gluten-free diet for 3 to 6 months regardless of the test results. The next test after the blood antibodies is an endoscopy. They take 5 to 8 biopsy samples from the small intestine to check for damage to the villi. Some doctors will diagnose based on positive antibodies without the endoscopy, but not all. you could check the doctors thread here at celiac com to see if there are any recommended doctors near you. Or contact the CSA chapter near you to see if the can recommend a good doctor.

African Americans can get celiac disease, There is at least one in my area with it at our local group. Another possibility is wheat allergy but that would usually cause IgE type symptoms of rash or difficulty breathing, swelling face etc.

You do need to keep eating gluten until all testing is done. The tests aren't accurate if you are off gluten for very long at all. Also false positive blood antibodies are rare, but false negative results are not rare. Finding a doctor who is knowledable about celiac can be tough. Lots of them are not.

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http://www.celiac.co...per-depression/
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#12 IrishHeart

 
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Posted 20 July 2012 - 04:31 PM

I agree with JERSEY ANGEL who said:

"To dismiss the matter simply because of race does not make sense to me--if a formal diagnosis is important to you, then by all means tell the doctor you want the testing. He/she works for you and your symptoms mean something is amiss."

(I would have said almost the exact same thing, but since she said it so eloquently, I just plain quoted her :) )

The origins of celiac as a recognized disease and the genetic components they have identified (thus far) also involve Northern Africa. Since the US is a heterogeneous country, of mixed races and nationalities, it is unwise for any doctor to "assume" that the African American community is unlikely to develop celiac. :angry:

It's the same as saying "no one else in your family has it, so you probably don't"!! Many of us heard that stupid statement....yes, well, SOMEONE has to be first for it to be acknowledged as "hereditary".

It's not necessarily a "Caucasian" disease. It's simply not diagnosed properly enough, period--to have any significant "patterns" just yet. If no doctor looks at the patient's HISTORY instead of the "assumed" profile of a celiac, then many patients will fall through the cracks and remain undiagnosed. (This was me, but not because of my skin color, but because I had been overweight and did not "fit the old criteria"...until I was so emaciated and dying that they had to pay attention.)

Go back and demand a celiac panel.

Just my two cents, but I hate to see a young girl go through the same BS I did for over 30 years until it was so bad I could not function.

Let us know what happens!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

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"If you want to lift yourself up, lift up someone else" Booker T. Washington

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Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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#13 Takala

 
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Posted 20 July 2012 - 05:47 PM

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

Those genes can be found in Africans and their descendants, too.
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#14 IrishHeart

 
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Posted 20 July 2012 - 06:09 PM

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

Those genes can be found in Africans and their descendants, too.



Yes!!...and the one I have as well.

DQ2.2
DQ2.2 is shorthand for the DQ α2β2 heterodimeric isoform. The isoform is encoded almost exclusively by the DQA1*0201:DQB1*0202 haplotype. The haplotype is linked to DR7. A small percentage of coeliac disease are associated with this haplotype, and some disease causing gliadins are presented by DQ2.2. The haplotype is found at high frequencies in the Mediterranean and West Africa.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#15 andyeight1

 
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Posted 21 July 2012 - 06:20 AM

Thank you everyone. Especially you, GFinDC. I read through the food threads, and that was somewhat soothing to say the least. Because I do want to find out what's wrong, but the idea of actually having Celiac scares me, as I'm Southern too, so many delicious dishes are made with gluten. :angry:

But when I go in to discuss my lab/samples soon, I will see what the doctor has to say, and then ask for the blood panel. :) I'll keep you guys updated.
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