Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

How Much Is Genetic Testing And Where To Get It?

janelyb

Recommended Posts

janelyb Enthusiast
janelyb
Posted

I would like my son and myself to get genetic testing but apparently my son's doctors are not infavor of getting it done because it is an expensive test and our healthplan may not cover it.

I would like to get the least invasive testing done like a cheek swab.

Does anyone know what reliable company to go through and how much?

Anyone know if Blue Shield HMO covers celiac genetics testing?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted

Enterolab does gene testing. Its about $150....I dont think insurance would cover any of it but I think the price is pretty reasonable.

Enterolab is the only lab which also tests for "sensitivity" genes. These are Non-Celiac genes. Personally, I dont find these genes to be very diagnostic. Basically almost the entire poulation will have these genes in some combination....unless you are of Asian decent.

If you get gene tested using Enterolab you will end up with one of these possibilties...

1. One Celiac gene and one Gluten sensitive gene.

2. Two Celiac genes.

3. Two gluten sensitive genes.

Its pretty much guaranteed you'll have one of these combinations. I dont put much stock into the "sensitivity" genes. No other lab recognizes these genes as being associated with gluten intolerance.

Having a Celiac gene would mean that you have a predisposition for Celiac. The gene test itself cannot diagnose Celiac Disease....it can only tell you whether or not you have a genetic predispostion for it.

Hope this helps. :)

Nantzie Collaborator
Nantzie
Posted

Enterolab. They send their genetics to Laboratories at Bonfils, which is an immunogenetics lab that does matching for transplants, etc. They've been around since the 1970s.

When I was deciding whether or not to go through Enterolab, I really researched the genetics aspect. I wanted to make sure that whoever was doing the genetic testing was reliable and knew what they were doing. I was able to find out that Labs at Bonfils has done work for a study done by the CDC (Centers for Disease Control). If that's not official, I don't know what would be. ;)

Then I emailed Labs at Bonfils to make sure they actually did work with Enterolab. They confirmed that they do the genetic testing for Enterolab.

Enterolab will test for all the gluten sensitive genes, which most people have. It can be really useful to know what genes you're dealing with - if you're dealing with a gluten intolerance, or whether you're dealing with classic celiac that just hasn't shown up on tests.

One of the main reasons I did genetic testing was because my husband thought I had finally gone off the deep end. I needed SOMETHING so that he would just leave me alone about it. :rolleyes: It really helped in that regard.

www.enterolab.com

Nancy

janelyb Enthusiast
janelyb
Posted
  • Author
Enterolab. They send their genetics to Laboratories at Bonfils, which is an immunogenetics lab that does matching for transplants, etc. They've been around since the 1970s.

When I was deciding whether or not to go through Enterolab, I really researched the genetics aspect. I wanted to make sure that whoever was doing the genetic testing was reliable and knew what they were doing. I was able to find out that Labs at Bonfils has done work for a study done by the CDC (Centers for Disease Control). If that's not official, I don't know what would be. ;)

Then I emailed Labs at Bonfils to make sure they actually did work with Enterolab. They confirmed that they do the genetic testing for Enterolab.

Enterolab will test for all the gluten sensitive genes, which most people have. It can be really useful to know what genes you're dealing with - if you're dealing with a gluten intolerance, or whether you're dealing with classic celiac that just hasn't shown up on tests.

One of the main reasons I did genetic testing was because my husband thought I had finally gone off the deep end. I needed SOMETHING so that he would just leave me alone about it. :rolleyes: It really helped in that regard.

www.enterolab.com

Nancy

and you can do it while off gluten??? My son has been eating gluten-free for 7 weeks and myself for nearly 4 weeks.

Is the stool test better than a cheek swab? Does that lab even do a cheek swab test?

Nantzie Collaborator
Nantzie
Posted

You can be gluten-free and still be tested by Enterolab.

The genetic test is the cheek swab.

The stool test checks for antibodies in the stool. Some of the same antibodies that they look for in the blood, I believe. The theory that Dr. Fine is working with is that the antibodies are much easier to detect in the stool than in the blood, and they are detectable for longer (as long as six months according to them).

I did just the genetic test for myself, but did the genetic and the stool for my kids. The gene test will only tell you what genes you're dealing with. The stool test will tell you if there is an active gluten intolerance going on.

The stool test for JUST gluten is $99. The gene test is $149.

Nancy

janelyb Enthusiast
janelyb
Posted
  • Author
You can be gluten-free and still be tested by Enterolab.

The genetic test is the cheek swab.

The stool test checks for antibodies in the stool. Some of the same antibodies that they look for in the blood, I believe. The theory that Dr. Fine is working with is that the antibodies are much easier to detect in the stool than in the blood, and they are detectable for longer (as long as six months according to them).

I did just the genetic test for myself, but did the genetic and the stool for my kids. The gene test will only tell you what genes you're dealing with. The stool test will tell you if there is an active gluten intolerance going on.

The stool test for JUST gluten is $99. The gene test is $149.

Nancy

I can't find it on their site, the gene test that is...

Nantzie Collaborator
Nantzie
Posted

Here's the page Open Original Shared Link

It's the fifth one down under Individual Tests.

Nancy

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


janelyb Enthusiast
janelyb
Posted
  • Author
Here's the page Open Original Shared Link

It's the fifth one down under Individual Tests.

Nancy

thanks...brain fart here I was scrolling right past it each time...LOL....now we shall see if hubby will allow us to test for $$$ reasons.

janelyb Enthusiast
janelyb
Posted
  • Author
Here's the page Open Original Shared Link

It's the fifth one down under Individual Tests.

Nancy

Alright I ordered the gene test for my son (without permission from hubby) but I'm sure he'll be ok with it. How long does it really take to get the results back? I'm only having them come to me, not to a doctor.

If his gene test comes back with celiac gene then I will get tested too.

jerseyangel Proficient
jerseyangel
Posted

My gene test came back in 2 and 1/2 weeks. :)

Nantzie Collaborator
Nantzie
Posted

Same here. 2 1/2 weeks. All three times I did it. It must be the standard turn-around. I'm sure it depends on how many people are being tested though.

If you provided an email address, they email them to you.

Nancy

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to alimb's topic in Coping with Celiac Disease
      1

      How to keep water down?

      Get someone to take you to the local ER and get some IV fluids on board. You already are or are at risk for serious dehydration. If you have no one who can transport you or you are too weak to make the trip in a car, call 911.
    2. alimb
      - alimb posted a topic in Coping with Celiac Disease
      1

      How to keep water down?

      Hi, I don't know if this is the right topic, but I've been glutened and I'm having a horrible time trying to keep even a sip of water -or any liquid- down. I've gotten to the point of which I'm having dry-heaving episodes because there's nothing left to vomit, and it's incredibly painful and I'm so weak and lightheaded as a result. If I try even taking the...
    3. Jefferson Adams
      0

      Gluten-Free Maple & Bacon Glazed Brussels Sprouts

    4. PixieSticks
      - PixieSticks replied to PixieSticks's topic in Super Sensitive People
      2

      Working in a kitchen with gluten?

      Hi yes! I was diagnosed 10 years ago through a biopsy. I’ve been gluten free ever since but no one I’m around is gluten free. I sometimes wore a surgical mask in the kitchen. but I believe particles were still getting through. I’ll definitely look into n95 instead. thanks for the reply.
    5. BoiseNic
      - BoiseNic replied to BoiseNic's topic in Dermatitis Herpetiformis
      11

      Skinesa

      Ya I used to react to iodine, but it doesn't bother me anymore after strict adherence to a gluten-free diet for many years now. I am happy to report that for the first time ever in my life, a probiotic formula is not making me break out, but actually seems to be helping. The strains in this formula have been specifically tested to help with skin issues. It...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,543
    • Most Online (within 30 mins)
      7,748
    alimb
    Newest Member
    alimb
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      How to keep water down?

      By trents · Posted

      Get someone to take you to the local ER and get some IV fluids on board. You already are or are at risk for serious dehydration. If you have no one who can transport you or you are too weak to make the trip in a car, call 911.
    • alimb
      How to keep water down?

      By alimb · Posted

      Hi, I don't know if this is the right topic, but I've been glutened and I'm having a horrible time trying to keep even a sip of water -or any liquid- down. I've gotten to the point of which I'm having dry-heaving episodes because there's nothing left to vomit, and it's incredibly painful and I'm so weak and lightheaded as a result. If I try even taking the tiniest sip of water, doesn't matter how long after I vomit, I start feeling nauseous and I no longer have the energy to try fighting keeping it down. Is there anything I can do to try keeping it down? I've taken prescribed zofran and dicyclomine already.
    • PixieSticks
      Working in a kitchen with gluten?

      By PixieSticks · Posted

      Hi yes! I was diagnosed 10 years ago through a biopsy. I’ve been gluten free ever since but no one I’m around is gluten free. I sometimes wore a surgical mask in the kitchen. but I believe particles were still getting through. I’ll definitely look into n95 instead. thanks for the reply. 
    • BoiseNic
      Skinesa

      By BoiseNic · Posted

      Ya I used to react to iodine, but it doesn't bother me anymore after strict adherence to a gluten-free diet for many years now. I am happy to report that for the first time ever in my life, a probiotic formula is not making me break out, but actually seems to be helping. The strains in this formula have been specifically tested to help with skin issues. It is gluten and dairy free also. 
    • knitty kitty
      Feeling ill

      By knitty kitty · Posted

      @Whyz, I take a combination of Thiamin (Benfotiamin), B12 Cobalamine and Pyridoxine B6 for my pain and headaches.  Really works well without hurting the digestive tract.  Riboflavin B2 also helps with migraines.  Most newly diagnosed people have vitamin and mineral deficiencies.  Check with your doctor and nutritionist.   If you follow the updated gluten challenge guidelines, you can wait until two weeks (minimum) before your appointment, then eat lots of gluten, like six slices of gluten containing bread or "name your poison".   Here's the Updated Gluten Challenge Guidelines: Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer. While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.   Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.   References: https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/ And... Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader  "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced." Keep us posted on your progress!
×
×
  • Create New...