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Genetic Testing For Infant

dionnek

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dionnek Enthusiast
dionnek
Posted

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.

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happygirl Collaborator
happygirl
Posted

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
Kelgs
Posted

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

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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
squirt2476
Posted

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
Guest cassidy
Posted

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
dionnek
Posted
  • Author

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
happygirl
Posted
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.)

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glutenggirl Newbie
glutenggirl
Posted
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
gfp
Posted
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
Guest cassidy
Posted
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.

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    • SamAlvi
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    • knitty kitty
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    • lizzie42
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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