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 For Children?

Integrous

Recommended Posts

Integrous Apprentice
Integrous
Posted

I was recently diagnosed with celiac disease. The tTg, EMA & DGP tests run on my four young daughters were negative, but I'd like to have them genetically tested so we know which, if any, to monitor going forward.  Their pediatrician said the only reliable genetic test is the HLADQ2/HLADQ8 blood test. 

 

Is it true that HLADQ2/HLADQ8 are the only reliable genetic tests?  Are there any commercially available genetic tests that are reliable?  I've read that insurance companies sometimes use such test results to deny future coverage, so I'm thinking there might be some benefit to staying "off the grid."  Thanks

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

30% of the population will have one or two of those genes (DQ2 and DQ8) but only about 1% of the population has celiac disease. Having the genes just meas that you have a greater chance of developing celiac disease compared to the rest of the population. You can have celiac disease without those genes. I know of at least one board member who has celiac disease but not the genes. The genes are found in about 95% of celiacs though.

 

My rambling is basically to say that even without the genes, the kids could have a chance of developing celiac disease. Without knowing the genetics, first degree relatives od celiacs have about a 10% chance of developing celiac disease. If your kids do continue to eat gluten, they should be retested every couple of years as celiac disease can develop, or finally reveal it's presence, at any time of of life. If your kids have symptoms, and test negative, you may want to make them gluten-free for 6 months to see if they improve. It could be non-celiac gluten intolerance (NCGI), or it could be celiac disease - those tests aren't perfect.

 

My three kids were tested and were all negative but two of them had some symptoms (nothing severe). I made the family gluten-free (gluten is not nutritionally required - it's a food of convenience now a days) and their health improved. Just something to consider.

 

Best wishes.

Cara in Boston Enthusiast
Cara in Boston
Posted

My son had the genetic test and was found to have a "low probability" . . . this led the doctor to conclude that he DID NOT have celiac disease (no classic symptoms, target size/weight, positive and negative blood test results)   His doctor could not explain the positive blood tests.  Said it might be a "lab error."   By that time, I had tested positive for Celiac too, so we found a new doctor.  He had an endoscopy and was found to have extensive damage.

 

So this is a case where he DIDN'T have the genes, but DID have celiac.  His new doctor (at the Celiac clinic at Children's Hospital Boston) doesn't even do the genetic tests because it doesn't really tell you anything.  You may or may not develop celiac if you have the genes, you may or may not develop celiac if you don't have the genes.  Waste of time and money and potentially misleading.

anand Newbie
anand
Posted

Hi,

It can be done through a cheek swab...

Open Original Shared Link

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,804
    • Most Online (within 30 mins)
      7,748
    MadiKlumpner
    Newest Member
    MadiKlumpner
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Struggling to get into a good pattern

      By cristiana · Posted

      Since I've been a member of this forum,  I've seen some people write that they have not been able to tolerate corn, and others nightshades - tomatoes, potatoes, eggplant, and peppers (including bell peppers, chili peppers, and paprika).    However, intolerances can be short term, just while you are healing.    So bear this in mind if you start dropping certain foods from your diet - you may well be able to eat them again once you are healed.
    • trents
      Anyone From South Africa

      By trents · Posted

      Welcome to the forum, @Izelle! Normally, the diagnosis of celiac disease involves two stages.  The first stage involves a simple blood test that looks for antibodies that are pretty specific to celiac disease. Celiac disease is an autoimmune disorder that attacks the lining of the small bowel which produces antibodies that can be detected in the blood with tests specifically designed for this purpose. There are a number of these tests that can be run. Some are more specific for celiac disease and thus more reliable than others. The two most common antibody tests ordered by physicians when diagnosing celiac disease are the "total IGA" and the "tTG-IGA" test. At least these two should always be ordered. Here is a an article outlining the subject matter of celiac antibody tests:  If the tTG-IGA levels are 10x normal then it is becoming common practice in some countries to grant a celiac diagnosis on the bloodwork alone. The second stage involves an endoscopy with biopsy of the small bowel lining to look for the damage to the small bowel lining typically caused by celiac disease's inflammatory process over time. This is usually done in response to one or more positives from the blood antibody testing and constitutes confirmation of the antibody testing to eliminate the possibility of false positives. 
    • Izelle
      Anyone From South Africa

      By Izelle · Posted

      Hi there, Please can you tell me exactly how this disease is diagnosed? I am also from South Africa Regards Izelle
    • Waterdance
      Diagnosed gluten allergy but not Celiac

      By Waterdance · Posted

      Thank you for saying that. That doctor diagnosed me with IBS with no follow-up so the relationship is already concluded. If I pursue diagnosis further I'll request someone else. 
    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      Hey everyone. Thanks again for your suggestions. I wanted to give an update and ask for some follow-up suggestions from you all.  So I did go through all of my food items and stopped eating things that were “gluten free” and switched over to the “certified gluten free” ones (the ones with the g symbol). I also stayed away from restaurants except once and there I ordered something raw vegan and gluten free hoping for the best. I also stayed away from oats and soy and dairy. I've also been increasing my vitamin B complex. I've been doing this for about 12 days and while I know that's not that long, I'm still getting sick. Sometimes having diarrhea. Sometimes getting headaches and having necklaces. Sometimes waking up feeling horrible brain fog. I did go to my GI doc and they did a blood test and found my TtG-IgA was in the negative range (and a lower number than I'd had before). I also had normal levels of CRP. My stool showed no elevation of calprotectin and no pathogens. My GI doc said the symptoms could be related to a gluten exposure or to IBS. I'm keeping a food diary to see if I can narrow down whats going on. I know I have good days and bad days and Im trying to isolate what makes a good day versus a bad day. Generally so far it looks like if it eat something super cautious like raw vegetables that I chopped myself into a salad and almonds, im fine but if I eat something more complex including, say, chicken and rice (even if packaged and certified gluten free or made by me with gluten free ingredients), it may not go so well. I may end up with either a headache, neck tension, brain fog, and/or diarrhea that day or the morning after. Any other thoughts or suggestions? I am planning to start tracking my foods again but I wanted to do it in more detail this time (maybe down to the ingredient level) so are there any common ingredients that celiacs have issues with that you all know of that I should track? I've got dairy, oats, soy, eggs, corn, peas, lentils on my “watch list”. Other things I should add? I'm hoping if I track for another two weeks I can maybe pin down some sensitivities. Appreciate the help and tips. Thank you so much!!
×
×
  • Create New...