Jump to content
  • 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

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

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

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
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

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
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

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
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
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

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

Nantzie Collaborator

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.

  • 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. - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Insomnia help

    2. - TheDHhurts posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      need help understanding testing result for Naked Nutrition Creatine please

    3. - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Insomnia help

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,107
    • Most Online (within 30 mins)
      7,748

    Maggie1349
    Newest Member
    Maggie1349
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @cristiana,  I react the same way.  Dairy consumption flushes out my digestive system within an hour, too! As casein is digested, it forms casomorphins that bind to opioid receptors in our bodies.  This is similar to digested gluten peptides being able to attach to opioid receptors in our bodies.   We have opioid receptors throughout our bodies including lots in the digestive tract. Casein raises tTg IgA antibodies just like gluten consumption does, which leads to further intestinal damage and continuing inflammation.  No wonder our bodies react to it by pushing the "emergency evacuation" ejection seat button! The mother of my childhood friend was British and introduced me to drinking tea properly with milk or cream.  I miss it so much.  And chocolate ice cream.  Not worth the after effects, though.  I've found taking Omega Three supplements (flaxseed oil, sunflower seed oil, evening primrose oil) helps shake those dairy cravings.   Green leafy veggies like broccoli, kale, and greens (mustard, turnip, collards) are great sources of calcium.  Avoid spinach as it is high in oxalates that block calcium absorption and may cause kidney stones.  Yes, more leafy greens are needed to reach the same amount of calcium in a glass of milk, but the greens have other benefits, like increased dietary fiber and polyphenols that act as antioxidants, reduce inflammation, and promote health.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards.  The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.   Some people in remission report being able to consume gluten again without consequence.  Another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.  
    • TheDHhurts
      Hi, I bought Naked Nutrition Creatine. It lists itself as gluten free but is not certified. (It used to be, but they dropped it in the past year or two apparently.) I wrote the company and asked them what testing results they had for creatine and they sent me the attached, which says the test result for gluten is <0.025MCG. I'm used to seeing test results as ppm, so I'm not sure what <0.025MCG means. Can it be converted to ppm easily? I want to confirm that it is safe to use.
    • cristiana
      When I was still recovering my gastroenterologist suggested I bought lactofree product as I was very bloated.  So I bought some from the supermarket and from memory, I drank a nice big glass of milk - and it went right through me literally within an hour or so, if my memory serves correctly.  I came off dairy completely next and it worked like a charm, but started to reintroduce quite gradually it as I missed it! To this day, if I overdo dairy products, they work like a mild laxative.  I've never wanted to give up milk completely as I like it so much, and my mum had osteoporosis and it's an easy way of getting calcium.  But it doesn't really 'sit' well with me.   You may need to experiment a bit as when I was healing certain dairy products were worse than others - I could cope with one brand of Greek yoghurt, but I got extremely and painfully bloated with another brand of live British yoghurt.  
    • wellthatsfun
      i have been strictly gluten free for 7 months. this includes avoiding anything that may contain gluten and making sure surfaces and appliances are clean. i am 18 years old in australia and my tTG-IgA results were 69U/mL, pretty low compared to most people's, for reference. i feel the exact same as before. sure, i was pretty much asymptomatic/silent. the worst i'd get was occasionally bad stools and pitting of the nails/brittle hair since early childhood - and i was diagnosed with low iron and vitamin d which checks out due to easy bruising and such. but those symptoms have remained. maybe i'm jumping the gun, sure. i know it can take years to fully heal. but being over half a year in, i feel that i should be, y'know, healing. i'm nearly at my wits end and wondering if i should have a piece of bread or something to see how i go - to see if i possibly have refractory? my mental health is declining as i feel myself wanting to bang my head against a damn wall out of frustration every day. cravings haven't gotten better. look, i love the stuff i still can have, like salads and such. OH! i haven't lost any weight, which is mind boggling considering i eat very healthily now! i've always been on the chubbier side which is atypical of coeliac. i just don't know what's going on with me. i try to remain hopeful but i'm just so sad all the time. thanks for reading  
    • trents
      @Charlie1946There is a PM (Personal Message) tool built into the forum website that allows you to send a private message to other forum users. Just hover over their name with your mouse cursor and the menu containing that tool will pop up. This is useful if you want to communicate with an individual without everyone else involved in the thread seeing it.  Are you realizing that in my PPI taper down recommendations in an earlier post above, I was responding not to your posts but to @Caligirl57? If you must use a PPI, I certainly would advise taking the lowest dose that is effective for you.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.