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1 Year Olds Blood Work Positive! Need Help, Advice.. Etc!

mmcc54

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mmcc54 Contributor
mmcc54
Posted

Hi Im new to all of this first off so any bit of info will be extremely helpful! Our baby girl started falling off the charts around nine months and just two weeks ago at her one year apt was marked as failure to thrive! her dr order a CBC and a celiacs test...her test came back positive! We are waiting to see a GI dr. Some of my questions are how accurte are these blood tests on babies? Her test results on her Tiss transglutam AB, IgG was a 16.1 on a scale of anything above a 6 is positive..is that a really high positive??? My second big question is what should I expect at the GI Dr? Will they do further tests? What types of questions should I be asking?? Sorry im just so lost and want to help my baby girl :(

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mmcc54 Contributor
mmcc54
Posted
  • Author

Hi My one year old had a positive test result...I have been doing research and im alittle confused on how to read the results..we are waiting to see the GI dr but I was hoping someone could help explain these for me!?

 

Tiss. Transclutam AB, IgG 16.1 (anything below a 6 neg)

Tissue transglutaminase IGA AB 1.2 ( <4 negative)

frieze Community Regular
frieze
Posted

Hi My one year old had a positive test result...I have been doing research and im alittle confused on how to read the results..we are waiting to see the GI dr but I was hoping someone could help explain these for me!?

rrate

Tiss. Transclutam AB, IgG 16.1 (anything below a 6 neg)

Tissue transglutaminase IGA AB 1.2 ( <4 negative)

It is fairly unusual to have an infant test positive...you can pretty much "take it to the bank".  there is a fairly high false neg  rate, nearly nil for false positive.  good luck

1desperateladysaved Proficient
1desperateladysaved
Posted

I would ask questions about , what foods to focus on, and whether her nutrient levels are adequate.  If you are by any chance still nursing, keep on. Mommy milk is the easiest to digest.   I suspect it could help for you to eat gluten free while nursing,  This is a guess by an experienced mother, but I was diagnosis challenged (I didn't know I had celiac disease)  when I had infants so I didn't do it myself. 

 

I think it a very good thing she tested positive, so that you know so early.  With the information that she has celiac disease, you can watch the diet and she will be healing and she can begin to make normal growth.  That will be exciting to watch.

 

You and your husband should be checked for celiac disease  as it is genetic.

 

I would love to hear of this daughter turning around to thrive, and I rather expect she will.

 

DT

nvsmom Community Regular
nvsmom
Posted

Yes, to have an infant show a positive tTG test is very unusual. Those tests show damage to the intestines and most infants haven't been alive long enough to make enough damage and antibodies to show on a test. Her result isn't super high (some go up into the hundreds) but it's not low either; I would rank it as typical... for an adult celiac.

 

The GI doc will probably want to do an endoscopic biopsy to view the damage. If it hasn't been run yet, the DGP IgA and DGP IgG tests are very good tests for kids - if you want another blood test to confirm the one you already have. She'll have to keep eating gluten until all tests are complete to have fully accurate tests.

 

Nutrient testing is also advised. Celiacs are often low in D, B's, potassium, calcium, iron, and ferritin. I think zinc is often low too.

 

This article has a lot of info that could help you learn about testing: Open Original Shared Link

 

If all further tests are negative, I would have her go gluten-free anyways... A positive test is a positive test and the only way to confirm it is correct is to give the gluten-free diet a try for 3-6 months or more. Some symptoms take a long time to clear up so 6 months is a good amount of time for observing improvement.

 

As another said, everyone in the family should be tested too.

 

Best wishes.

mmcc54 Contributor
mmcc54
Posted
  • Author

Thanks everyone!! I was just confuded since the IgG test was positive and her IGA was positive! They still are saying have her eat gluten untll we see the specialist it just so sucks that I have to keep feeding her whats making her sick :(

tommysmommy Newbie
tommysmommy
Posted

My 1 1/2 yr old was diagnosed last year. Trust me, its not all that unusual.. but it is unusal that your doctor did the test and figured it out! Count your blessings...celiac dx is live-saving at a young age & she wont suffer the way countless others who go undx do! It is essential to get her body off of gluten immediately...she is not absorbing the nutrients she needs. You will see dramatic improvements on a gluten-free diet & SHE WILL BE FINE, HEALTHY!

The GI will want her on gluten to do an endoscopy to confirm dx and see damage/issues then advise u on nutritional/diet details. Peds GI offices are known for long waits for appointments...if they wont take u right away CALL EVERYDAY, ask to be on cancellation list, threaten to remove gluten before appointment...dont be afraid to push them. The one thing I learned is I needed to be my sons advocate & fight for him!

Dont be scared of celiac, it takes time to adjust but isn't terrible, I promise! Gluten ended up being the answer to all kinds of problems in my family of 5. Good luck!

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    • trents
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      I did some research on what exactly is gluten . . . what defines it.  "The term gluten usually refers to the elastic network of a wheat grain's proteins, gliadin and glutenin primarily . . . " "The types of grains that contain gluten include all species of wheat (common wheat, durum, spelt, khorasan, emmer and einkorn), and barley, rye, and some cultivars of oat" (emphasis mine) "The storage proteins in other grains, such as maize (zeins) and rice (rice protein), are sometimes called gluten, but they do not cause harmful effects in people with celiac disease." (emphasis mine) From: https://en.wikipedia.org/wiki/Gluten What I found most interesting is that some cultivars of oats contain gluten. Could this explain, in part at least, the controversy surrounding oats? I mean, depending on the source, it could indeed sometimes include gluten and cause a celiac reaction.
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