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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 Celiac.com's FREE weekly eNewsletter   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

How Accurate Is Prometheus Celiac Genetics Test?
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Mine came back  <0.1x  which they state on the results as EXTREMELY LOW

 

Is this a reliable test?

 

So far my test results from eveything are"

 

Endoscopy with 9 biopsies ... Neg

Anti gilandin antibodies  ...  1:10   stated as borderline

Transgulatminase ab IgA  ... 60.9        neg is <15

  """""""                       IgG  ... < 15        neg is <15

 

Anti  Saccaromyces Antibody ... 32.1    neg is <20.1

Saccharomyces Cerevisiaw Ab Test  50.4   neg is <20.1

 

Went back to eating as much gluten as I wanted, everyday for 2 months before endoscopy, felt the same as I did when I was gluten free for 1 year+

 

What say you?

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I don't really understand the genetics results? Are they saying you do not have either of the .celiac genes so that makes it very very unlikely that you have Celiac?

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I don't really understand the genetics results? Are they saying you do not have either of the .celiac genes so that makes it very very unlikely that you have Celiac?

That is correct, the genes they test are DQ2 which 95% of all Celiacs have, and DQ8, which 5% of Celiacs have, combined I am

DQ2-. DQ8-

 

This test does not depend on eating gluten or not, you can be gluten free for 10 years, that will not change your genes, either you have it or you don't. 

 

But is it an accurate test?

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I understand which genes they test for. I don't see any reason gene tests from Prometheus wouldn't be accurate. I think it is a standard CYA disclaimer with gene tests to say they have a 99.9% accuracy.

http://www.cureceliacdisease.org/?s=False+positive&submit=Search

http://www.cureceliacdisease.org/archives/faq/how-does-one-rule-out-other-possible-causes-of-the-positive-ttg-blood-test

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I understand which genes they test for. I don't see any reason gene tests from Prometheus wouldn't be accurate. I think it is a standard CYA disclaimer with gene tests to say they have a 99.9% accuracy.

http://www.cureceliacdisease.org/?s=False+positive&submit=Search

http://www.cureceliacdisease.org/archives/faq/how-does-one-rule-out-other-possible-causes-of-the-positive-ttg-blood-test

 

 

Anyone, do I have Celiac or not.  THere is no census of opionion by my GI doctors, 2 say yes, 2 say no.  Need a tie breaker.

 

If NO, then what would cause the high numbers on some tests?

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Anyone, do I have Celiac or not.  THere is no census of opionion by my GI doctors, 2 say yes, 2 say no.  Need a tie breaker.

 

If NO, then what would cause the high numbers on some tests?

not sure what these are, they are not celiac tests?

Anti  Saccaromyces Antibody ... 32.1    neg is <20.1

Saccharomyces Cerevisiaw Ab Test  50.4   neg is <20.1

 

with negative biopsy taking 9 samples and you do not have the genes, your chances of having celiac are very slim

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not sure what these are, they are not celiac tests?

Anti  Saccaromyces Antibody ... 32.1    neg is <20.1

Saccharomyces Cerevisiaw Ab Test  50.4   neg is <20.1

 

with negative biopsy taking 9 samples and you do not have the genes, your chances of having celiac are very slim

sometimes positive in celiac, more often in crohn's

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Anyone, do I have Celiac or not. THere is no census of opionion by my GI doctors, 2 say yes, 2 say no. Need a tie breaker.

If NO, then what would cause the high numbers on some tests?

I gave you a link. Trying not to diagnose you or scare you but - get your liver checked. Get checked for other AI diseases. Chron's? Colitis? I'm sorry. It's highly unlikely you have Celiac. What was the result of your colonoscopy biopsies? That is likely your problem.

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No one here can be a "tie breaker" for you, hon.  Sorry.We're not doctors.

Gene tests are reliable, but gene tests do not diagnose celiac.

They can be used to rule it out, but we have seen at least 2 diagnosed celiacs who post on here with genes other than DQ2 and DQ8.

 

You may need further testing and another medical opinion. 

From what I understand, Crohn's and ulcerative colitis are usually diagnosed by symptoms, barium scans, blood work and a positive  Anti  Saccaromyces Antibody test 

 

Other diseases in which ASCA are found:

 

If I were you, I'd seek  more opinions until I got a definitive answer. And by that, I mean medical opinions. Best wishes.

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One thing that always amazes me about the gene test is most experts say 97% of celiacs have DQ 2 or 8.

 

Which means 3 percent of celiacs don't have either one!

 

And yet doctors always act as if a negative gene test is proof you don't have it. Since I'm DQ9, I often wonder if I'm just one of the 3 percenters.

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One thing that always amazes me about the gene test is most experts say 97% of celiacs have DQ 2 or 8.

 

Which means 3 percent of celiacs don't have either one!

 

And yet doctors always act as if a negative gene test is proof you don't have it. Since I'm DQ9, I often wonder if I'm just one of the 3 percenters.

 

The doctors I heard speak said it is rarer than 3% of Celiacs & if someone doesn't have the genes, they don't have Celiac.  Basically, it is extremely rare if anyone without the genes actually has Celiac. 

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I am another prometheus celiac plus person. My results were a postive DGP IgG and DGP IgA only. The genetics part was unable to interpret. Mine says that there were substances present in the sample that interfere with the HLA typing method. I have searched and can't find out what else this means. I had a negative biopsy, but positive ANA. Being treated with plaquenil for sjogren's but the doctor does not believe that this one is primary.

I feel like I just dumped a lot of $ for a test that is inconclusive and the doctor wants to do another one. John, I agree, how accurate is the test and where do you go from here. I figure, now, go gluten free because I definitely have something autoimmune going on and since gluten-free diet helps with inflammation and thyroid, I don't want any more problems. I just wonder about my kids.....

Renaye

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I am another prometheus celiac plus person. My results were a postive DGP IgG and DGP IgA only. The genetics part was unable to interpret. Mine says that there were substances present in the sample that interfere with the HLA typing method. I have searched and can't find out what else this means. I had a negative biopsy, but positive ANA. Being treated with plaquenil for sjogren's but the doctor does not believe that this one is primary.

I feel like I just dumped a lot of $ for a test that is inconclusive and the doctor wants to do another one. John, I agree, how accurate is the test and where do you go from here. I figure, now, go gluten free because I definitely have something autoimmune going on and since gluten-free diet helps with inflammation and thyroid, I don't want any more problems. I just wonder about my kids.....

Renaye

 

 

That sounds like the sample that was sent to them for genetic testing was bad.  Perhaps the lab that drew the blood didn't prepare it properly?   Or a mouth swab that had food or biotene mouth wash coating the inside of the mouth? Maybe they would consider running it again on a "good" sample?  maybe you or the doc should take that to the lab that made the sample and demand they make it right?

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 Mine says that there were substances present in the sample that interfere with the HLA typing method.

 

Karen's right.

Then, the sample was tainted or contaminated  in some way. Not your fault. Not the lab's fault. 

Could be any number of reasons why it happened. It likely lies with whomever collected the blood sample.  

 

(if this were a drug test, let's say....for example, there would be question of what someone took to mask results or what was added to the sample to affect the results)

 

 

My chemist hubs says that is cause for re-testing in any lab he ever worked in.

 

Your primary care doctor can order a genetic test. Mine did and it was covered by insurance (for the most part) I think I paid a $50 or 60 co-pay.

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Was looking up LabCorp as that is the one my insurance uses for tests.  It said this for either the blood or the mouth swabs:

 

 

"Limitations:

Even with appropriate precautions, an occasional specimen may not be satisfactory for testing. In such cases, fresh specimens should be collected for retesting."

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I gave you a link. Trying not to diagnose you or scare you but - get your liver checked. Get checked for other AI diseases. Chron's? Colitis? I'm sorry. It's highly unlikely you have Celiac. What was the result of your colonoscopy biopsies? That is likely your problem.

Colonoscopy done earlier this year, one small polyp removed, biospsy neg.

 

Blood test and ultrasound done for liver as part of abdominal US.  All normal.   No GI doc has even mentioned Chron's or UC.  IMO, I may have SIBO, due to previous antiobiotic issues previous to all this starting.  I know when I take an antibiotic, things get better.  When I take a probiotic, get very bloated.  I have told the docs this, in one ear out the other. 

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I am scheduled to see a new gastro this week as my old one decided to leave so I will ask him and work with him on the insurance. I remember that day that they took 13 vials of blood from me. Everything else was readable. You never know. Here I kept thinking that I had something else wrong. Wish me luck and thank you!!

Renaye

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One thing that always amazes me about the gene test is most experts say 97% of celiacs have DQ 2 or 8.

 

Which means 3 percent of celiacs don't have either one!

 

And yet doctors always act as if a negative gene test is proof you don't have it. Since I'm DQ9, I often wonder if I'm just one of the 3 percenters.

 

I've wondered this too! In all the literature I've read, it is extremely rare for a person to develop celiac without a variation of DQ2 or DQ8. However, the individuals in those studies were tested for all variations of the genes and both alpha and beta units on each loci. It is very unusual to stumble across a doctor who orders that thorough of a genetic test. It seems they either look for DQ2.5 on the alpha side and DQ2, DQ8 on the beta, or just the beta or just DQ2.5 and not DQ2.2. So, from my research, there appears to be some disharmony in the percentages that the studies give and what specificity of tests are used in practice. 

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