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suzyq63

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suzyq63 Apprentice

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

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

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

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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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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