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

Genetic Testing For Infant


dionnek

Recommended Posts

dionnek Enthusiast

I was dx with celiac last year, and have had our 2 yr old genetically tested since then (she has one gene) and am pregnant again. I was wondering if anyone knew if it was possible to have the genetic test done on my newborn in the hospital when they do all those other tests? It's a long shot I know, but I would love to know right away if I even have to worry about him having celiac too or not.


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

I would suggest talking about this with your doctor, as they would be the ones making the decision. The test will be sent out (probably to Prometheus Labs), so if they are doing other bloodwork, you could ask if that test could be added. As long as you have a supportive doctor that is aware of your Celiac and your concerns, I would think it would be possible.

Good luck and congratulations :) :) :)

Kelgs Rookie

According to this article they can actually use the cord blood to test.

Open Original Shared Link

Good luck,

Kelly

Mom of Alex 9 - Gluten free since 1/07

Ethan 6 - Gluten free since 1/07

Zac 1 has never had gluten

Wife to Mark - Gluten free since 2003

I was dx with celiac last year, and have had our 2 yr old genetically tested since then (she has one gene) and am pregnant again. I was wondering if anyone knew if it was possible to have the genetic test done on my newborn in the hospital when they do all those other tests? It's a long shot I know, but I would love to know right away if I even have to worry about him having celiac too or not.
squirt2476 Rookie

I am very interested in hearing answers to this as well. My 2 year old son was recently diagnosed, and my husband and I have both tested positive for having the gene. I am currently 5 1/2 months pregnant and would love it if they could test the new baby early to see if it will even carry the gene.

Good luck to you!

Guest cassidy

I'm pregnant as well. I've been trying to pick a pediatrician and I would like to have a "meet & greet" before I choose one but none of the offices seem to do that, although I've read that they should. I hate to just trust my friends who have healthy kids (hopefully mine will be healthy, but celiac is my concern) and don't know how their doctors act with chronic illnesses. I'm going to make another round of calls and tell the receptionists that I need to know if the doctor knows about celiac before I can choose him/her. It would just be odd to meet the pediatrician for the first time in the hospital and try to get them to run the test.

I don't know much about genetic testing, but is this post stating that you can just do a blood test to find out about the genes?

dionnek Enthusiast

cassidy - the genetic test that we had on our 2 year old daughter (through Enterolab) was a cheek swab (saliva). I'm not really sure if there is a blood test per se that detects the genetic part - I'm just wondering about all that. I would love to not have to fork out the money for Enterolab again for this baby, so was hoping they could test for it in the hospital with all the other tests (so insurance would cover it) :)

BTW, the peds should let you sit down with them before you pick one - we "interviewed" 3 pediatricians in person before picking ours (of course, that was before I knew anything about celiac and that I had it, but turns out we might have lucked out b/c our pediatrician has at least hear about it and said he will run the blood panels on our daughter every year (she doesn't currently have celiac - just hte gene) with her annual checkup). I don't suppose there is any law that would require them to talk to you, but just makes sense for something so important (yoiu WILL be seeing a lot of him/her!) Good luck.

happygirl Collaborator
I'm not really sure if there is a blood test per se that detects the genetic part - I'm just wondering about all that. I would love to not have to fork out the money for Enterolab again for this baby, so was hoping they could test for it in the hospital with all the other tests (so insurance would cover it) :)

I'm not sure if Prometheus is blood or salivea....ask your doctor to test your child for the Celiac genes, and send it out to their genetic lab....very often, it is Prometheus. Given that a parent has dx'ed Celiac, there is a medical reason for it, and insurance should cover it. (It wouldn't be any different than taking your child at any age to the dr. to have them test for it...same procedure.)

Open Original Shared Link

Open Original Shared Link


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



Celiac.com Sponsor (A8-M):



glutenggirl Newbie
I was dx with celiac last year, and have had our 2 yr old genetically tested since then (she has one gene) and am pregnant again. I was wondering if anyone knew if it was possible to have the genetic test done on my newborn in the hospital when they do all those other tests? It's a long shot I know, but I would love to know right away if I even have to worry about him having celiac too or not.

The genetic test can be readily drawn at that time. Other tests are not appropriate such as the gliadin, tissue transglutaminase, and endomysial antibody titers

gfp Enthusiast
The genetic test can be readily drawn at that time. Other tests are not appropriate such as the gliadin, tissue transglutaminase, and endomysial antibody titers

True in some ways but perhaps not useless.

If the baby has elevated IgG then this is due to transfer across the placental wall.... how this affects the baby is I guess either good, bad or indifferent... IgA should not be elevated until breastfeeding... so in a way a IgG + and IgA - test is still useful.

This could make a difference later for decisions on breastfeeding or introducing gluten.

Guest cassidy
True in some ways but perhaps not useless.

If the baby has elevated IgG then this is due to transfer across the placental wall.... how this affects the baby is I guess either good, bad or indifferent... IgA should not be elevated until breastfeeding... so in a way a IgG + and IgA - test is still useful.

This could make a difference later for decisions on breastfeeding or introducing gluten.

I never learned much about the testing part because my blood test was negative (although I never actually saw it). The diet has made all the difference. So, I guess I don't know if I could be passing on celiac or gluten intolerant genes.

Would there be any elevated levels in the baby if the mother is gluten-free? Also, during breastfeeding, if the mom is gluten-free, wouldn't everything be normal until the baby was introduced to food that contained gluten.

I also wonder since my blood test was negative if my baby has a problem with gluten if it would be the same type where his blood test would be negative. I don't know if this means that I have gluten intolerance versus actual celiac, but that is one reason that I really would like the gene test so we will know if we have to worry even if he always has negative blood tests.

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. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    2. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

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

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.