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Confused On Results

Liviesmom

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Liviesmom Newbie
Liviesmom
Posted

Hello - this is my first venture to this site. My 3 yo daughter got her celiacs results and we can't get to the GI for 2 mos. As mentioned, her total IgA was 59 (range for age group 41-395). But, alleles were detected in the genetic test, giving her a higher risk for celiacs. She has chronic diahera (or just mush, I guess). I know the GI will want to scope her, but in the meantime, should I start going gluten free?? She has some symptoms, but isn't testing positive, except for having the gene. The lab report says no serological markers were detected, but that this test does not rule out a diagnosis of celiacs. Any words of advice would be great.

Thanks,

Karen

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aikiducky Apprentice
aikiducky
Posted

If you want a positive biopsy, which will give you an official diagnosis, you need to keep her on gluten until the biopsy is done.

Pauliina

happygirl Collaborator
happygirl
Posted
Hello - this is my first venture to this site. My 3 yo daughter got her celiacs results and we can't get to the GI for 2 mos. As mentioned, her total IgA was 59 (range for age group 41-395). But, alleles were detected in the genetic test, giving her a higher risk for celiacs. She has chronic diahera (or just mush, I guess). I know the GI will want to scope her, but in the meantime, should I start going gluten free?? She has some symptoms, but isn't testing positive, except for having the gene. The lab report says no serological markers were detected, but that this test does not rule out a diagnosis of celiacs. Any words of advice would be great.

Thanks,

Karen

Hi Karen! Welcome to the board.

A total IgA doesn't diagnose Celiac, but tells if she has an IgA deficiency (which can affect the accuracy of the other Celiac blood tests).

Did she have the other blood tests run: Open Original Shared Link

Do NOT go gluten free until the testing that you choose to have is completed. The testing measures the damage done by gluten and the antibodies your body produces. If you stop eating gluten, and are a Celiac, your body begins to heal and you will test negative. That is the last thing you want---a false negative!

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      By knitty kitty · Posted

      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
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      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.
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