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suzyq63

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suzyq63 Apprentice
suzyq63
Posted

Hi. I'm Paula, mom of Alison, 13, with some developmental delays. I joined a couple of years ago when Alison's celiac panel came back with positive IgG antigliadin antibodies. The other tests were negative, as was the endoscopy at that time. She has been followed every 6 months for the past 2 years and each time her IgG AGA would increase and then her IgA AGA became positive, but tTG was still negative. I figured that eventually celiac would catch up with her.

Sure enough a few weeks ago I took her to the doctor thinking she was anemic, which she was (although I thought it was female issues). A week later we had her 6 month follow-up with the gastro, who informed me that her tTG was now positive (20; over 15 being positive). Her endoscopy was this morning and now we wait for the biopsy results, which we are expecting will be positive for celiac now. She also has Type 1 diabetes, which is why we initially started with celiac panels 2 years ago. I guess that about sums it up.

Paula

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LDJofDenver Apprentice
LDJofDenver
Posted

Has she been on a gluten free diet all this time? Or is this just something you will be implementing now that her blood work is positive for celiac disease?

Grace'smom Explorer
Grace'smom
Posted

Hi. I'm Paula, mom of Alison, 13, with some developmental delays. I joined a couple of years ago when Alison's celiac panel came back with positive IgG antigliadin antibodies. The other tests were negative, as was the endoscopy at that time. She has been followed every 6 months for the past 2 years and each time her IgG AGA would increase and then her IgA AGA became positive, but tTG was still negative. I figured that eventually celiac would catch up with her.

Sure enough a few weeks ago I took her to the doctor thinking she was anemic, which she was (although I thought it was female issues). A week later we had her 6 month follow-up with the gastro, who informed me that her tTG was now positive (20; over 15 being positive). Her endoscopy was this morning and now we wait for the biopsy results, which we are expecting will be positive for celiac now. She also has Type 1 diabetes, which is why we initially started with celiac panels 2 years ago. I guess that about sums it up.

Paula

Hi Paula,

If the biopsy is positive for celiac, you'll have a lot of great support and resources here. Everyone has been so incredibly helpful to me in the past 2 mos after my daughter's diagnosis. Wishing you all the best. Emily

suzyq63 Apprentice
suzyq63
Posted
  • Author

Thanks. Alison had her endoscopy on Tuesday. Dr. didn't see damage, but he didn't expect to see it. Biopsy results will be in next week, but we'll be away camping; so our follow-up appointment isn't until 8/18. I'll probably try calling while I'm away to see if they'll give me the results over the phone. The dr. took 10 samples, so hopefully that's enough to get the official diagnosis. Due to Alison's several other diagnoses, I would prefer to have the diagnosis be "official".

The endoscopy has caused an infection or inflammation on her uvula (the thing that hangs down at the back of the throat). It's very red and uncomfortable. Hopefully it will clear up quickly. The dr. did prescribe some liquid medication that's supposed to calm it down.

Paula

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