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Entrolab Or Prometheus?

Nic

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Nic Collaborator
Nic
Posted

Hi, I called my older son's ped. GI today to ask his opinion on having my younger son tested through Enterolab. Apparently he has not heard of them and doesn't agree with testing through the stool. I explained how Lucas has been showing symptoms like his brother (constipated) and also he is developmentally delayed with Hypotonia. He said he would send me paper work to have his blood sent to Prometheus (am I spelling that right?). I feel very frustrated about this because I was trying to avoid anymore blood work and I just wanted to hear him say, "yes, go with Enterolab". Forgive me for saying this as I know so many of you used Enterolab and trust them but I just feel apprehensive (sp?) about giving money to an "on-line" lab that my insurance won't cover and my doctor has never heard of. I know I am being silly and I am sure they are very trustworthy but when you live pay check to pay check it is a lot of money to spend without feeling certain. Any thoughts on this?

Nicole

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Nantzie Collaborator
Nantzie
Posted

I would go to www.enterolab.com, and print out a bunch of information to give to the doctor. That's what I did when I gave my daughter's Enterolab results to her ped. He said that he had never heard of them, but that since it's an accredited lab, he trusts that the results are accurate.

These are the pages I printed out for him -

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

I'm the type who does my own research. I check and recheck and verify everything. Enterolab says that they send their genetic tests to a immunogenetics lab called Laboratories at Bonfils.

So I found their site: Open Original Shared Link I emailed them and asked them if it was true that they did the genetics for Enterolab. They verified that they do.

Then I went even further and researched at the U.S. Department of Health and Human Services website and found that Labs at Bonfils is mentioned in the Genetics Testing Laboratories Directory. Open Original Shared Link

I didn't research Dr. Fine's Curriculum Vitae by calling Baylor University, but by the time I got to this point, I, personally was satisfied that it was a valid laboratory.

Even if you use Enterolab as just a starting point to see if more testing, or a trial of the gluten-free diet was in order, it would give you some solid information to go on. Whereas even doctors will admit that the current blood tests and biopsy approach will miss some cases.

I hope that helps.

Nancy

celiacgirls Apprentice
celiacgirls
Posted

I used Enterolab and found my GI doctor through them. When I went to him, he suggested the genetic testing. He wanted to use Prometheus but was all right with using Enterolab. According to his staff, the Prometheus testing may or may not be covered by insurance and would be $300 - $400. They also said that Enterolab's test showed the different subtypes of the gene and gave more information than Prometheus. The test was $149 + $20 S&H. The genetic test is done with a cheek swab at Enterolab.

KaitiUSA Enthusiast
KaitiUSA
Posted

Prometheus...I used them and they are one of the best labs for celiac testing. They do a full panel and a gene test. I would highly recommend them and doctors accept them alot better than an Enterolab. If it comes back negative and you are having symptoms then I would recommend an Enterolab but I would go woth Prometheus first choice.

TCA Contributor
TCA
Posted

We used Prometheus. I too asked my dr. about Enterolab and he was not supportive. I know lots of people here swear by them and have considered them myself, but felt that I should go with what is more accepted in the way of testing. The genetics testing was 440.00 with prometheus, but insurace covered all but the deductible. I'd check with your insurance co first.

chrissy Collaborator
chrissy
Posted

we tested my son through promethius because is is IgA deficient. they did gene testing and whatever different testing it is that needs to be done because of the IgA deficiency. it cost us $720. at first our insurance rerused to pay for it, but i had the doc send a letter, and they later covered quite a bit of it.

Nic Collaborator
Nic
Posted
  • Author

Has anyone ever had a negative experience with Enterolab? They seem more affordable but I worry about the doctor not knowing of them.

Nicole

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dawnd Newbie
dawnd
Posted

I would love to believe Enterolab will tell me for sure if my 2 1/2 year old has to continue to be gluten free. He has been gluten free for 1 year. I removed gluten from his diet because he wasn't progressing motorically and he always had a rash and he seemed in a fog. I did see changes in him when we went gluten free but in order to commit to gluten free long term I need some numbers. It is so hard to have a child on this diet. I don't want to do a food challenge to see if his behavior changes because who knows why a child's behavior changes day to day- that is too subjective. This is the first time I have heard of Prometheus testing. How is it different from the typical blood test from the doc?

Nic Collaborator
Nic
Posted
  • Author

I believe they are only different in respects to quality. They are supposed to be one of the best at diagnosing for Celiac. I am not sure why the doctor doesn't send it to the regular lab my insurance company makes us use. I wonder if they don't do this test, or maybe just not well. I am not sure.

Nicole

chrissy Collaborator
chrissy
Posted

our ped gi's office told me that promethius lab is the only lab she knows of that is able to find exactly what it is they are looking for-----this was when my son was being tested with his IgA deficiency.

TCA Contributor
TCA
Posted
I would love to believe Enterolab will tell me for sure if my 2 1/2 year old has to continue to be gluten free. He has been gluten free for 1 year. I removed gluten from his diet because he wasn't progressing motorically and he always had a rash and he seemed in a fog. I did see changes in him when we went gluten free but in order to commit to gluten free long term I need some numbers. It is so hard to have a child on this diet. I don't want to do a food challenge to see if his behavior changes because who knows why a child's behavior changes day to day- that is too subjective. This is the first time I have heard of Prometheus testing. How is it different from the typical blood test from the doc?

Prometheus Genetic testing can be done under any diet, but the celiac panel should only be performed while on a gluten diet. Enterolab claims you don't have to be gluten-free at the time. I'm hesitant to try Enterolab because of things I've heard drs. say. Others here swear by them, though.

High-Tech Mom Rookie
High-Tech Mom
Posted

From my experience, the Prometheus CeliaGene test is not accurate. My child was tested about 2 years ago at age 3, and the test came back negative. We re-tested my child at age 5 just last month through Quest (and tested the rest of the family), and my child's genetic blood test came back positive with DQ8. My husband's also came back with DQ8, so it is apparent that Prometheus made the mistake initially.

After watching my child suffer celiac symptoms for years, enduring the battery of blood tests, and getting inconclusive (and even erroneous) results, my child didn't receive positive results for his celiac disease until the disease severely progressed. Had we found out years ago, at the time that we originally suspected celiac, our child could have been saved a couple of years of damage.

We are now waiting for our EnteroLab results. Dr. Fine is pioneering research and rethinking the way celiac disease is approached. He's approach makes sense, and is in the best interest of the patient.

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