• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
Integrous

Genetic Testing For Children?

Rate this topic

Recommended Posts

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

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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.

  • Upvote 1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,404
    • Total Posts
      941,105
  • Member Statistics

    • Total Members
      66,429
    • Most Online
      3,093

    Newest Member
    Jb_rivera
    Joined
  • Popular Now

  • Topics

  • Posts

    • The distillation process does prevent the gluten protein from passing through the filtration process.  However for people who are gluten intolerant like I am, the cross contamination that occurs prior to distillation is still present after distillation.  Therefore while the protein molecule isn't present, the distilled liquid is cross contaminated by containing the gluten protein molecule prior to the distillation process.  I get very ill from any distilled alcohol that contained gluten prior to be being distilled.  For those of you that are gluten intolerant, please be exceptionally careful. Extracts are another thing to stay away from for the same reason.  We have to make our own.  It's a long process but worth not getting sick.
    • I just do a variety of gluten free foods.  Many because someone doesn't like cheese on his potatoes or someone won't eat something else.   I figure they won't starve if all they like is the turkey and the canned cranberry or the sweet potatoes and the apple sauce.  
    • Did the doctor diagnose you with anything?  It sounds like diverticulitis.  Usually treated with 10 days of antibiotics.  Infection can improve, but if it isn't 100% cleared, it can flare up again.  I just had a flare up that didn't improve after 10 days on meds.  Ended up in the hospital for 5 days of IV  antibiotics.  This condition is not related to Celiac.  Let your doctor know you are still feeling pain.  In the meantime, take it easy (eat low fiber) for a couple of weeks and see if that helps.  Call doctor if you develop sharp pain, fever, or blood in your stool.  
    • People who do not have celiac disease, but who have celiac-like symptoms that improve on a gluten-free diet are prime candidates for a condition called non-celiac gluten sensitivity (NCGS). Researchers don't know much about the condition. There are no biomarkers, so they can't just do a blood test. People with this condition often experience celiac-like symptoms. Many of people with non-celiac gluten sensitivity see their symptoms improve on a gluten-free diet. However, these people may also have puzzling sensitivities to other foods that just don't seem to add up. Interestingly, foods with gluten often contain fructans, a type of fermentable oligo-, di-, monosaccharides and polyols (FODMAPs). Fructan is one such compound. Could fructan be the culprit? View the full article
    • Well timed Pep talk Admin. I am trying to accommodate all my intolerances this year to make dinner. Last year  I will admit I was so ill, I didn't bother doing a holiday dinner. My spouse (bless him) handled creating a small safe meal in 2016 as I sulked in the corner miserable as T-Day was my favorite holiday. I was still eating blender foods back in Nov 2016 post gluten challenge, so I sulked, pitied myself, and felt very far from holiday spirit and quite honest was not very thankful despite some long overdue medical clarity.  Ahh so here we are 2017,  I can have potato's again, thank goodness my daughter wants garlic mash.  They are back on the menu! Now I just have to try to convert my pumpkin ice cream pie to coconut milk style ice cream vs cow milk ice cream and master gluten-free crusts. Fingers crossed. Happy Thanksgiving everyone and if you are in the Celiac newly diagnosed pit the sun will rise again -stay with us. 
  • Upcoming Events