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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    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)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.