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

Genetic Testing


mamaw

Recommended Posts

mamaw Community Regular

i'm sure this has been talked about before but I finally got my pcp to let me have the genetic testing, but he told me I would have to find out exactly what markers I wanted tested for. ( ANd I have to pay him ) Some docs are such idots but I agreed to find out everything I wanted . I just want to know what my genetics are regarding celiac.

SO I know I want to see if I have the DQ2 & 8 marker --- what else do I need to tell his guy???? I don't have time to read over all the old threads regarding this. And I want to do it while he is in the mood to let me do it....... He has no idea about any of this--- when I told him my daughter and grandson were full-blown celiac his comment was SSSSSSOOOOOOOOOO. DUh, I could have hit him.

It's pretty sad when patients have to inform wealthy doctors about illness'......

PlEASE anyone PM regarding this matter......

mamaw


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

I actually have an article in front of me that I was reading ....

HLA-Dq2 and HLA-Dq8. One or both are presnt in 90 to 97% of Celiacs. However, these markers are in 25-40% of the general population, also. (i.e., so just having the gene doesn't mean we have it.)

Tell your dr (I'm sure you already know this!) that 1 in 22 first degree relatives and 1 in 39 second degree relatives have Celiac, also!

That's all I could find. I take it you have already had the blood work done?

mamaw Community Regular

I had the bloodwork done and it came back false positive. Since the pcp doesn't give copies unless you pay a fee : I don't have the bloodwork . I know how much better I feel not eating wheat & gluten. I just wanted to know about the markers I may or may not have...

thanks

mamaw

penguin Community Regular
I had the bloodwork done and it came back false positive. Since the pcp doesn't give copies unless you pay a fee : I don't have the bloodwork .

thanks

mamaw

Your Dr charges for copies of your bloodwork? Is that legal?!?! :blink:

CMCM Rising Star
i'm sure this has been talked about before but I finally got my pcp to let me have the genetic testing, but he told me I would have to find out exactly what markers I wanted tested for. ( ANd I have to pay him ) Some docs are such idots but I agreed to find out everything I wanted . I just want to know what my genetics are regarding celiac.

SO I know I want to see if I have the DQ2 & 8 marker --- what else do I need to tell his guy???? I don't have time to read over all the old threads regarding this. And I want to do it while he is in the mood to let me do it....... He has no idea about any of this--- when I told him my daughter and grandson were full-blown celiac his comment was SSSSSSOOOOOOOOOO. DUh, I could have hit him.

It's pretty sad when patients have to inform wealthy doctors about illness'......

PlEASE anyone PM regarding this matter......

mamaw

Why don't you do the Enterolab gene test? It's $149. They send you the swabs, you follow directions in getting the sample (from your cheeks, inside your mouth) and send it back. Quick and easy!

With this doctor's attitude I wouldn't give him a penny. The money paid to Enterolab goes to their Intestinal Institute.

mamaw Community Regular

yep, my pcp charges for copies but they will send them to another doctor for free...... Next time I go in I'm going to ask if this is his idea because he did get a new front office girl,,, The bell went off maybe she is pocketing the dollar for each copy. Wow, I hate to think that ,in fact that is a horrible thought so I truly hope I'm wrong about that!!!!!! She is kinda odd when I think of it............

I just may do the swab thing instead.

thanks

mamaw

Rachel--24 Collaborator

I second the recommendation of using Enterolab. Not only do they check for DQ2 & DQ8 (Celiac genes)...they also check for gluten sensitivity genes as well.


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



Celiac.com Sponsor (A8-M):



Guest Robbin

OMG!! I once worked in a drs. office where the front desk girl charged a quarter!! She was later fired for taking money from the petty change drawer!! What is your drs' problem? It's your money and you are paying him, after all. Doctors are in a SERVICE industry, aren't they?! Sometimes I wonder. I just did the enterolab because of loosing patience with my dr. It was very easy and the mailing couldn't have been easier either. Forgive my ignorance, but how can a positive be false? I thought a positive was nearly 100% ? :)

mamaw Community Regular

I wish I knew the answer to the false positive thing as I have asked a zillion times to explain that one to me.... Doctors really suck... They just want money . I just try to stay gluten-free. but I was curious if I had the two genes DQ2 & DQ8. I thought maybe I could get ine ins to pay since it was close in my family. I also have to hace the testing pre-approved by my crappy ins. Been waiting about a week for that so I probably will have to do mailorder and pay. I don't know why we have to have ins. as mine pays next to nothing but they charge me like crazy.

So which is the best and most reliable for gene testing?????

thanks

mamaw

CMCM Rising Star
I wish I knew the answer to the false positive thing as I have asked a zillion times to explain that one to me.... Doctors really suck... They just want money . I just try to stay gluten-free. but I was curious if I had the two genes DQ2 & DQ8. I thought maybe I could get ine ins to pay since it was close in my family. I also have to hace the testing pre-approved by my crappy ins. Been waiting about a week for that so I probably will have to do mailorder and pay. I don't know why we have to have ins. as mine pays next to nothing but they charge me like crazy.

So which is the best and most reliable for gene testing?????

thanks

mamaw

You have to have specific genes to develop celiac disease. Beyond the specifically identified genes, it is also believed that a number of other unidentified genes are perhaps involved as well.

Here's a capsule of what Dr. Green says in his new book:

HLA antigens are proteins found on the surface of almost every cell in the body. These HLS antigens patrol the immune system and identify other cells as either "self" or "nonself"--a foreign substance. Everyone has a slightly different version of these HLA proteins, but we each have 2 sets: one inherited from each parent. So we each react differently to different foreign substances.

HLA antigens are thought to play a role in the development of certain genetically predisposed diseases such as diabetes and celiac disease. This is because the genes that predispose people to autoimmune diseases may also control the HLA antigens.

SO....the 2 specific genes that have been recognized so far inceliac disease are part of the HLA class II DQ genes. These genes encode particular HLA proteins that are found on the cell surface, namely HLA-DQ2 and HLA-DQ8. 95% of celiac patients have the DQ2 and most of the remaining 5% have the DQ8.

SO....if you get the gene test you are finding out if you have this PREDISPOSITION. The gene test doesn't diagnose celiac disease, only the predisposition. That said, Dr. Fine of Enterolab says testing with the gene means, in his opinion, that you should stop eating gluten to PREVENT future reactions. If you have no symptoms (and many people are diagnosed when they have no discernible symptoms), there's always the possibility you will never get triggered into active celiac disease. In that case, it's your call I guess. By not eating gluten you are ensuring you will never get celiac disease and will never get the intestinal damage that could lead to a host of other serious problems, including cancer.

If you are having symptoms related to celiac, and you find you have the predisposing gene or genes, you need to go on the diet and see if the symptoms go away over time. There is less choice involved in this scenario.

I don't know how gene testing is done via a regular doctor, or how much it would cost, but thru Enterolab it's extremely easy and the results are completely clear when they come. The cost at Enterolab for just the gene test is $149, done with 2 q-tip like swabs which you rub on each inner cheek and then send back to them.

If you don't want to do additional testing at this time, I'd say it's worth it to just do the Enterolab test on your own and not involving your insurance co. I chose that route because as you said, the insur. co's make every darn thing a big deal and basically want to get out of covering most everything they can. I decided to bypass them because I didn't want my "rating" to go up (more $$$ to be iinsured).

You don't NEED to go thru a doctor to get the gene test,either.

mamaw Community Regular

CMCM

thanks for the advise and the info. I think I will go the route you said as I'm sick & tired of my pcp p%$#@# footin' around.

mamaw

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,953
    • Most Online (within 30 mins)
      7,748

    Ardbeg
    Newest Member
    Ardbeg
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Nicbent35
      Wow she was just playing with play dough yesterday and I actually thought i wonder if I have to worry about play dough! But no meltdowns yesterday. Is your daughter celiac or just gluten sensitive/intolerant? Your son still had to go on Ritalin after going gluten free?
    • growlinhard1
      I had the endoscopy with biopsy done. I have gastritis and duodenitis at this point. The biopsy should provide the cause of the inflammation findings. How common are these findings when Celiac is the ultimate culprit?
    • Wheatwacked
      Welcome to the forum @cookiesyum, I lasted on staton for about a month before getting so weak I had to stop.   Switched to Nicotinic Acid and I posted the results in a previous post.  Instead of getting sicker and weaker on the statin I feel I am improving day by day.  Nicotinic Acid was first used for cholesterol in 1955.  
    • Wheatwacked
      According to research, consuming gluten can potentially trigger sudden mood swings and increased irritability in children, particularly those with gluten sensitivity or celiac disease, making them more likely to have tantrums or display behavioral issues; this is because gluten can trigger an immune response in the body, potentially impacting brain function and neurotransmitter levels.  When my son was diagnosed in 1976 when he was weaned his doctor told us that at 5 years old his kindergarden teacher would beg us to put him on Ritalin.  And so it did happen.  My son was on Ritalin though high school.  In the morning he was a devil who could not put on his socks. Half an hour after the morning dose he was an angel wanting to help mom get ready.  Talk about Jekyll and Hyde! Dr Danel Amen could be a good resource for you.   
    • MommaBear82
      Yes, it certainly can! My daughter has a reaction from just playing with Playdough. She doesn't get GI symptoms at first, just psychological mostly. It can get really bad. It's like night/day behavior. My daughter is eight, but started showing signs around 6.
×
×
  • Create New...