Gene Test

[MyMississippi]

I'm thinking I might go for the gene testing since I am allergic to wheat and can't do the eating gluten thing. I really would like to know if I have the genes.

I certainly have a suspicious family history for celiac----I've had abd. cramps, bloating, and "gurgling" intestines since I was 18. My son has had recurrent mouth ulcers since childhood- (celiac symptom). My sister is anemic with gut problems too. My father (of Irish decent )had same problems as well as most of his siblings did. His own father (my grandfather ) had issues too and referred to it as the "Carr Belly " So apparently these bellyaches go way back !

Is the test expensive--- I have insurance--- but not sure if I will ask my MD for the test or just do it myself.

Thanks !

[brendygirl]

I've been thinking about doing this, too. My parents are both Norwegian, so wondering if I have two of the genes or just one.

There are articles about genetic testing and labs on the homepage on this site. Very informative.Good luck!

[lizard00]

My doctor uses Prometheus. I believe that there are only 3 labs int the US that are capable of doing this test:

Enterolab (which is still controversial), Prometheus and Kimball. (If I'm wrong on that, I apologize and please correct me)

The next question is how much will my insurance pay???

[happygirl]

Many other labs do it as well - including

Quest Open Original Shared Link

Labcorp Open Original Shared Link

And most labs that your doctors office uses. Go to your doctor and ask to him to test you for HLA DQ2 and DQ8.

Otherwise, use Kimball Genetics - they are recommended by the Celiac Center at the University of Chicago. Open Original Shared Link

[MyMississippi]

Thanks for the info !

Will look into it---

[blueeyedmanda]

I had my testing done through AML labs which has since converted to Quest Diagnostics. It is the lab our hospital uses, my insurance covered the entire panel.

[*lee-lee*]

i used Prometheus. my GI doc ordered the tests and i went to a local hospital to have the blood drawn. Supposedly the doctors office and the hospital have some kind of agreement where they don't give Prometheus any patient info and all the billing is through the doctor and the hospital. i was confused as far as what that meant for me and what i'd have to pay but i bit the bullet and went ahead with the testing. i just got the initial EOB from my insurance company and sure enough, $788 was billed from the hospital. no mention of Prometheus. insurance hasn't paid yet so i don't know what is my portion. i'm hoping it's not more than a $10 or $25 co-pay.

[givenupgluten]

I go to Dr. Green in NY, and he orders the tests through Kimball Genetics. I didnt end up having to pay anything at all, b/c I went through my insurance and they covered it. When you receive the tests, you can get codes for the test, so that you can contact your insurance co. and find out if they will cover it. I called before I sent in the test just to make sure. I'm not sure about the other genetic testing labs, but i've heard Enterolab is also pretty well known and respected.

[nora-n]

https://www.celiac.com/articles/21628/1/Cel...tics/Page1.html is an article that had been in a newsletter but now it has been published on the website.

Some labs only test for DQ2 and 8, and some only for the beta chain, and those with the half gene are missed, and those with the gluten sensitive genes will just get an answer that they are negative for celiac gennes without further expnanation. Some labs have changed their testing and reporting now (those that calculate your risk now. The old way of reporting or not reporting results was ovten very confusing)

I am thinking about ordering a gene test from enterolab as I am in europe and only got the test for DQ2 and 8, and now my doctors think they excluded celiac and it is all in my head, and have referred me to the shrinks. The article comments on negative resutls, that they still cannot be used to exclude celiac like my doctors think. ( they say it si absolutely impossible for me to be celiac. My daughter is diagnosed celiac, and I have DH but without diagnosis so I disagree)

nora

[jbuckeye]

I thought I'd share my experience on gene testing again since this topic pops up from time to time. I know Kimball Labs is very respected, but they misdiagnosed me the first time they did my testing. I was a biopsy and blood test proven Celiac, and they told me that I was non DQ2 and 8. When I told them that I'd already been diagnosed, they reran the test and found DQ8. They said that it was "acting like another gene" that I had and they needed to do a more sophisticated test.

I tested my kids and myself through Enterolab, and the test results showed that Enterolab uses the American Red Cross for the gene testing. If you can't trust the American Red Cross, who can you trust?

[nora-n]

jbuckeye, I have been wondering for several months now what the enterolab test said about you (assuming you did some gene tests through them)

and what genes Kimball thought you had initially.

I remember thye sent the sample on to a bigger lab and they found DQ8.

I guess Kimball used a rapid test, a commercial test kit, I found it when googling.

I guess the bigger lab actually carried out a proper test.

There is an article where it is mentioned which lab Enterolab uses, https://www.celiac.com/articles/21628/1/Cel...tics/Page1.html , Bonfils does testing for Enterolab

and see the next article Ten facts

https://www.celiac.com/authors/45/Dr.-Scot-Lewey

I was negative on a test that seems identical to kimball's test, so the question is a bit relevant to me.

Daughter is a diagnosed celiac.

Here is your initial posting. Open Original Shared Link Blogspot seems to be down these days so thefoodoc's link does not work right now.

nora

[glutenfreewithease]

jbuckeye, I have been wondering for several months now what the enterolab test said about you (assuming you did some gene tests through them)

and what genes Kimball thought you had initially.

I remember thye sent the sample on to a bigger lab and they found DQ8.

I guess Kimball used a rapid test, a commercial test kit, I found it when googling.

I guess the bigger lab actually carried out a proper test.

There is an article where it is mentioned which lab Enterolab uses, https://www.celiac.com/articles/21628/1/Cel...tics/Page1.html , Bonfils does testing for Enterolab

and see the next article Ten facts

https://www.celiac.com/authors/45/Dr.-Scot-Lewey

I was negative on a test that seems identical to kimball's test, so the question is a bit relevant to me.

Daughter is a diagnosed celiac.

Here is your initial posting. Open Original Shared Link Blogspot seems to be down these days so thefoodoc's link does not work right now.

nora

Just a note, I was tested in August through Enterolab and both of my girls are being tested this month and Enterolab is currently using the American Red Cross. It is also listed on the bottom of my lab results. American Red Cross is not associated with Bonfils is it?

[jbuckeye]

Hi--Kimball originally sent a letter saying I was DQ2 and 8 negative--nothing else. When they reran the test, a new letter came saying I was DQ8 positive.

Enterolab said I was DQ8 and DQ7.

My daughter is also DQ8 and DQ7.

I'm thinking that maybe DQ8 and 7 look similar/have similar actions, but genetics is WAY over my head.

jbuckeye, I have been wondering for several months now what the enterolab test said about you (assuming you did some gene tests through them)

and what genes Kimball thought you had initially.

I remember thye sent the sample on to a bigger lab and they found DQ8.

I guess Kimball used a rapid test, a commercial test kit, I found it when googling.

I guess the bigger lab actually carried out a proper test.

There is an article where it is mentioned which lab Enterolab uses, https://www.celiac.com/articles/21628/1/Cel...tics/Page1.html , Bonfils does testing for Enterolab

and see the next article Ten facts

https://www.celiac.com/authors/45/Dr.-Scot-Lewey

I was negative on a test that seems identical to kimball's test, so the question is a bit relevant to me.

Daughter is a diagnosed celiac.

Here is your initial posting. Open Original Shared Link Blogspot seems to be down these days so thefoodoc's link does not work right now.

nora

[nora-n]

Thank you, I was wondering wether I should order a gene test from enterolab. Shipping is very expensive from europe.

As far as I know, DQ7 and DQ8 are not similar, but I can look at the Wiki for DR. Looks like there are several DQ8 types, so maybe this rapid test kit is not so good for all of the DQ8 types, just the more common ones. Maybe. Just a theory.

nora

[nora-n]

The DR wiki page is Open Original Shared Link

I even have a link that says that DQ7 is very very similar to DQ8:

Open Original Shared Link

"Eight of the 122 celiac disease patients lacked both the heterodimer and the DRB104 alleles; therefore, we further screened the DQB1 locus to investigate if other alleles were present in association to celiac disease (2)(14). Two of these eight celiac disease patients showed the DQ2 molecule (DQB10201 allele in heterozygosis); but one of them carried also the DQB10501 allele, also found in Sardinian patients to be associated to celiac disease (15); four showed the DQ7 molecule (DQB10304 or DQB10301 alleles). Another patient carried the DQ8 molecule encoded by the DQB10302 allele, and the remaining patient had the haplotype DQB10501 in homozygosis (15). The DQ8 molecule seems to be an alternative to DQ2 in influencing susceptibility towards celiac disease, being present in up to 20% of celiac patients not bearing of DQ2 in the Mediterranean area (2)(14)(16). Our data do not support an earlier finding that HLA-DQ7 is a nonsusceptible molecule (2). In fact, DQ7 was present in 50% of our celiac disease patients in the absence of the heterodimer and of the DRB104 alleles. Because the DQ7 molecule is very similar to the DQ8 molecule, it could alternatively present similar gluten-derived peptides to restricted T cells (17). DQ7 has been detected in a few celiac disease cases in the absence of DQ2 but in association with the DRB104 alleles (18). "

I also have a link that DQ9 is very similar to DQ8

Open Original Shared Link and they say right out that both DQ7 and DQ9 are very similar to DQ8.

"The DQ8 molecule is highly homologous to two other naturally occurring alleles, DQ7 (DQA1*0301/B1*0301) and DQ9 (DQA1*0301/B1*0303). These three alleles share an identical chain (DQA1*0301) and have nearly identical