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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Could I Have Celiac? I'm African-American.
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andyeight1    0

--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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taterhart    0

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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andyeight1    0

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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frieze    114

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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Mnicole1981    4

--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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andyeight1    0

^ 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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taterhart    0

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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frieze    114

^ 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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jerseyangel    409

--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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Mnicole1981    4

^ 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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GFinDC    609

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.

CSA Chapters

Doctors section of celiac forum

Friday evening reading list for young people: :):

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

How bad is cheating?

Short temper thread

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IrishHeart    1,634

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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IrishHeart    1,634

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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andyeight1    0

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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GFinDC    609

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.

You are welcome Andy. Check out the recipe section of the forum also, there are many, many recipes for about anything you can imagine. If you need help with a recipe you can post a thread asking for help there and someone will probably have an answer. There really is a lot of food to eat without gluten in it. It just takes getting used to a little different way of cooking things. We had a thread on favorite ways to make grits going a while back.

If you get your test results and post them, most likely someone will be able to help with interpreting them. The test results and the ranges for the results are both needed to interpret them. It sometimes takes a couple weeks to get the results from a lab.

Have a great weekend! :)

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squirmingitch    495

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.

Andy, I'm just as southern as you & I thought I would die w/o all my old southern favorites. But you know what? It pretty much boils down to biscuits & dumplings that you will miss. AND there's hope even there. I haven't even begun to look for dumpling recipes but I have tried a few biscuit recipes & they just aren't cutting it for me. But I have not lost hope. I just KNOW there is something out there that will fit --- I know it! We just have to find it. I have been gluten-free for almost 8 months & reading this board you wouldn't believe how inventive these people get with subbing gluten-free ingredients for gluten ingredients in foods. We'll eventually find our biscuits & dumplings, never fear.

And THIS is the current FULL celiac panel. Make SURE you get the doctor to do ALL of these tests as so many docs do not b/c they don't have a clue what the full panel is so print this out & take it with you & be FIRM but polite.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The DGP test was added recently to the full panel.

Also can be termed this way:

Endomysial Antibody IgA

Tissue Transglutaminase IgA

GLIADIN IgG

GLIADIN IgA

Total Serum IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

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