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      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
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kbenj1

Blood Test Negative, But Could It Be Celiac?

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Hi, I am new to the gluten free diet. I tested negative for celiac in a blood test, but all of my symptoms disappeared once I went gluten free. Last night I ate a publix rotisserie chicken, and within an hour I hade aphthos ulcers on my throat, I was nauseous, my stomach was cramping, and I was gassy. My doctor thinks that the chicken was bad, but I think it was the gluten. It's been 24 hours, and I'm still not right. Could I have celiac?

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Hi kbenj1,

My diagnosis was tumultuous, just like many others' here. What I've learned (which may or may not be a popular opinion) is that it could always be Celiac. The tests are fallible - some have a 30% false neg. rate. Even with genetic testing, there's just so little known about the cause and necessary contributing factors that it's hard to make diagnosis fool-proof! It could be that the chicken was bad or it could be the gluten. Did anyone else have the chicken? Did they get sick?

I suggest that you request copies of all of the Celiac lab work. Many times doctors do not order the full Celiac panel, opting to just test TTG and total IgA. That would be the first thing to do. Does your family have a history of autoimmune diseases? Fertility issues? Vitamin deficiencies? All of the above? (:P)

Laura

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if you've already gone gluten-free, getting tested again might not show if you do have gluten intolerance. Perhaps, as Laura said, you'll have more information if you see copies of your actual test results. my daughter (20) was tested last january and everything came back negative. we breathed a sigh of relief and celebrated. but her symptoms kept getting worse - she kept developing more food allergies, feeling worse, having more anxiety, and by november, i actually thought she was developing schizophrenia.

she went gluten & dairy free and within 4 days we were saying it was the gluten. it's now been a couple of months and she's a world better in every way. i got tested and mine came back positive, and i have the genes.

my point is that the tests aren't very reliable. what is reliable is if you go gluten-free for a 6 week trial and find that you are better. the reason people go gluten & dairy free is because the milk protein, casein, in some people's bodies, can 'look' like gluten and the body can react to it. i didn't go dairy free because i'm stubborn, i guess, but i'm doing fine.

rotisserie chicken does have gluten added to it by some stores. i don't know if all do, but i saw it listed on one i looked at. you could contact the store and see if anyone else reported getting ill. if no one else that ate it with you got sick as well, i'd think it was not food poisoning.

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Thanks so much for your replies. My husband and daughter ate the chicken and were fine. The one I ate was the barbecue flavor, and it definitely has gluten. There are autoimmune issues in my family-my mother has 7 different ones, and I'm wondering if she has celiac but doesn't know it. My daughter has stomach problems and eczema, and I'm wondering if she might have an allergy as well. The tests I had done were the IgG IgA. Are there others tests I should do? I know having gone gluten free will alter any biopsies I may need, but I am desperate for relief!

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You may or may not have celiac, but it does sound like you might be gluten intolerant. There are several other tests which make up the celiac panel, which consists of the following:

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

As you can see, none of them is labelled IgG IgA (maybe it was AGA IgA?) They normally run the IgA versions of tests unless total serum IgA is insufficient. My personal opinion is that the DGP is the most likely to give an accurate result, although if any of the tests is positive it should be explored further. I don't know how long you have been eating gluten free? If longer than two weeks you would need to resume eating gluten for a while.

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My blood work only lists IgG and IgA. It doesn't break those tests down the way you did. I will ask my doctor about it. I have been gluten free for 16 days now, and have felt better than I have in years. But my symptoms have started to recur after eating the publix chicken(see above post). Not sure if it is gluten or something else. It's been over 48 hours and I'm still not feeling well. Had an ultra sound of my abdomen today to rule out other problems. I see my dr next week, so hopefully I will get some answers.

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the only part of my tests that came back definitive was the TTG - Tissue Transglutanimase IGA. Labs measure things differently, but I had mine sent to Prometheus Labs and the local lab accidentally sent it to their usual PeaceHealth Labs. So i ended up with results from 2 different labs, interpreted differently, from the exact same blood sample.

The tests these 2 labs ran were

Immunoglobulin A (IgA)

Endomysial Antibody, IgA

Gliadin IgG

Gliadin IgA

Tissue Transglutaminase IGA

The celiac specialist my family is working with said that a study was done where blood samples from people with known celiac disease were sent to various labs and there was only a 30% accuracy rate in the results. Meaning that they missed 2/3 of the diagnoses.

The fact sheets on this page from the University of Chicago's Celiac Center are full of great information: http://www.cureceliacdisease.org/medical-professionals/guide/factsheets

and this e-book (lower right corner of page) is equally helpful: http://www.cureceliacdisease.org/

Celiac disease is genetic. When my daughter went gluten-free, I spent the next 3 days researching online and by the time i was done i knew without a doubt that I also had it, my brother and mother as well. I opened a facebook conversation with 8 of my cousins on my mom's side to ask them about health problems - and the answers just confirmed for me that was the genetic link. Getting the test was just a formality.

There's really no advantage to having a diagnosis in the US, unless you want one. If you thrive being gluten-free and are sick when you eat it, that's really all you need to know. i did get the genetic test, which Prometheus Labs will do. However, while I have the gene, by its location the Prometheus Labs report says that i have a low chance of having celiac - 2 out of their scale of 8. And yet, I have it. the Celiac Specialist here said that if you have the gene, you have it.

What you're describing with your mom and your daughter sounds like you're all in the same boat.

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    • I think the prevalence much higher too. It seems like a lot of our friends are celiac and at least a few families we know have more than one affected member. My husband is celiac (diagnosed several decades ago) and I am pretty sure some of our kids are as well, even though the spouse doesn't want to admit it or have them screened because of our tight budget and the cost of gluten free food. But if celiacs seem to be everywhere, why do celiac organizations say that 1% are affected and 80% of them are undiagnosed?
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    • Thank you so much for your very well thought out answer.  You're right, I'm just going wait 12 weeks because although I feel like crap, it is not horrible like I know it is for some people. How anemic were you? I ask because I have had low iron on and off 12 ferritin (22+ normal) 37 iron (normal 50 and above), and 10 transferrin saturation (14 is normal) have been my lowest.  I know this is not crazy low and what happens is I do respond to iron pills. After a year of taking iron my levels became normal again, so the dr. advised me to stop taking the pills and within 6 months my levels dropped below normal again.   I had to start taking  iron again and now my levels are back to normal. The doctor said she would do an endoscopy if I didn't respond to the iron and clearly I have.  But the thing is I know if I quit taking the iron again my levels will just drop. This has been going on for two years lol and Kaiser doesn't really think it's abnormal. I guess my question is would someone with celiac even respond to iron pills, or would it just stay low?  Thanks so much!  I've been kind of a  lurker on here for awhile and have noticed you are always so helpful!! 
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