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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.

Quest Vs Prometheus
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the2ofus    0

I am having a hard time getting my doctor and insurance company together with me on having my blood work done at Prometheus labs in california. I had heard from several people that this was the best lab for this testing.

Does anyone know if Quest is accurate? Quest is covered by my insurance and the other one isn't unless they approve it ahead of time. I don't know if I'm going to fight my insurance company for nothing or should I persue it?

Anyone with a lot of knowledge on the labs please help me. I only want to take the test one time.

Thanks

Robin

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gf4life    5

I only know a little about the two labs, but I will share my experience with you.

I had my blood test done at Quest and was negative. My kids had the same tests done at Quest and they came back positive on IgG only. We got the referral to a pediatric GI and he said that he doesn't like to use regular labs for celiac disease testing. He ONLY trusts Prometheus for celiac disease testing. So he ordered the tests. My insurance of course refused to cover the cost, so the children's hosp. lab sent the blood to Quest again. Again they came back IgG positive only. I looked into having the Prometheus tests done and paying out of pocket, but for my 3 kids it was going to cost over $2000. The blood test for Celiac is around $270, but if it is negative then they automatically run the gene test and then the two test together cost over $700! I just couldn't swing that kind of money, so I opted for Enterolab. We go back to the doctor next week and I will show him the positive results from Enterolab for my kids, but he might not accept them.

My personal opinion is that Quest doesn't do enough of the celiac disease tests to know how to do them well, and they also don't do the most specific test (TTG) accurately. See they have to use Human Tissue Transglutaminase when they do the TTG test and most regular labs use Guinea Pig Tissue Transglutaminase and that makes the test not so accurate. I feel using Quest is a waste of money. Just my opinion though. The decision to fight the insurance company or not is yours. I personally chose not to fight, since I had already waited two years for my own testing to be completed and I did not want to waste more time while my kids suffered.

God bless,

Mariann

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the2ofus    0

Hi Mariann,

Thanks for your information. Half of my battle is seeming to be getting the doctor to call the insurance company. When I spoke with the woman at the insurance company she asked me if there was a local lab that could do this. I told her there is but they don't do it with the same amount of accuracy. I since found out from quest that they don't do the gene panel. I am hoping that this will be my tool to get them to approve it. In the mean time I can't try the gluten free diet because I'll mess up my results.

You must do an awful lot of research. Every section I go in it seems as though you have some really good information. Thank you for all the answers you have given to me all over this board.

Robin

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gf4life    5

Thanks Robin,

I'm glad I could help. I spent over two years researching all aspects of celiac disease, the gluten free diet, the testing and all that and I feel like I hardly know much at all. I can understand a little of why doctors are lost when it comes to diagnosing, but the information is out there. I just hope that more and more doctor will become receptive to learning from us patients! :rolleyes: I hope you have enough information available for your insurance to cover Prometheus. I've heard they are the best for testing for celiac disease.

God bless,

Mariann

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jka8168    1

I called a well known Celiac Disease Program and specifically asked whether I should allow my son's dr to use Quest for his bloodwork. I received a firm negative, and Prometheus was highly recommended. This Center also lists Mayo Clinic and Specialty Labs as appropriate.

I also have spoken with a support group leader whose sister got a false negative from Quest and retested positive later.

I called Prometheus directly and spoke with customer service. They will send the transport kits to either the dr or patient, and will process the tests if specimens are returned with a dr's script and direct payment or (accepted) insurance info. They give a discount for cash forms of payment (20-25% I think). I remember that the Panel including Total IGA if needed was around $217 with cash discount.

It is important to call the dr ahead of time. He may not have an account with Prometheus, and some drs don't want to bother in that case because direct payment from the patient does not give their billing system a way to add their cut to the billed office visit amount. In that case, find a dr who has an account with Prometheus or who will work with you regarding payment options.

If you don't call ahead, your specimens will go to a lab with which the dr has an account. Once the blood is drawn, it's too late to specify.

Many regular labs may be licensed to do the test, but the results are very dependent on skilled operator procedures. Many techs haven't run enough tests yet to be that skilled. They may or may not run or read your test correctly. I got this info from a registered dietitian who works with a celiac disease program.

Prometheus Labs # is 888-423-5227.

Hope this helps

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the2ofus    0

Well, I have my prometheus kit and my authorization number from my insurance company. I can't believe they actually approved it. I can't wait to have my test done. I haven't removed any gluten from my diet yet but I'm going to wait another week to take the test. In this week I'm going to pig out on pasta etc. I just hope the test is accurate.

Thanks for everyones help

Robin

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