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Questions About My Moms Tests


Stacy0w

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Stacy0w Enthusiast

I've had stomach issues my entire life, but was just diagnosed with celiac at 38. My mom has had health issues for years. Hypothyroid now hashimotos, chronic fatigue, fibro, connective tissue disorder and raynauds and constipation. She's also been deficient in D and B vitamins for years and years with no long term improvement despite megadoses and injections so she quit. So I told her to get tested for celiac. She told them to run a full celiac panel. They agreed. Then called and said all was normal. I had her go get the results and a few things weren't normal. Her cholesterol was high which it has never been before. Her T4 was a 2 (thinking it is messing with her cholesterol), but they didn't change her meds. Then for their celiac panel they ran

total iga which was 514 (norm 91-414)

Ttg iga <2 (norm 0-3)

Deamidiated gliadin igg 2 (norm 0-19)

Didn't they miss something in the celiac panel? Should they have run the deamidiated gliadin igA? I think I've convinced her to try gluten free based on all the autoimmune issues she has, but I wanted to know what others think about the labs done. Thanks in advance.


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nvsmom Community Regular

Yes, they missed a few: tTG IgG, DGP IgA, and maybe the EMA IgA (but that is usually negative if the ttG IgA was).  They could also do the endoscopic biopsy - some people have negative tests but a positive biopsy.

 

I wish her luck with the gluten-free diet (after all testing is done).

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
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      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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