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deanna1ynne

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Everything posted by deanna1ynne

  1. deanna1ynne
    I just thought of another question to ask related to this: Although my husband has "normal" numbers (as shown above), is there any reason for him to pursue further testing for celiac? I don't want to "see it everywhere," but as I've been reading about it (and seeing it in three children *and* his side of the family now, suggesting he's got the genes....)...
  2. deanna1ynne
    We recently had to do this with my 8 yo. She’s been mostly gluten free since age 3, of her own volition. Just started refusing to eat bread, pasta, pizza, etc. We didn’t find out it hurt her until she was 7, and we didn’t think to have her tested for celiac until she was 8. It has not been fun to make her eat bread again, and we ended up testing after just ...
  3. deanna1ynne
    We live with my in-laws, and my mother in law would like to know the answer to these two questions: 1) Can going gluten-free have any negative impact on her health (outside of making sure you get appropriate nutrients)? She's heard that if you go gluten-free without being celiac, it can actually cause you to become gluten intolerant or even have celiac...
  4. deanna1ynne
    Thank you all very much! I think we're beginning to get a clearer picture of things and realize that it may be in the extended family much more than we realized! I was sitting and chatting with my in-laws last night about it, and asked if there was any celiac in the family, and they were adamant that no one has it. But in the same conversation, I sat...
  5. deanna1ynne
    We have not had genetic testing done, but we did have a standard celiac panel done. Our results were both negative; mine were all under the minimums (<0.8 on every one), but hubby had his gliadin (deamidated) IgG & IgA both around 6, I think (where 15 is the cut-off, again).
  6. deanna1ynne
    Thank you all for being the voice of reason and talking me down. It's just really hard for me to process that I may have three children ages 10 and under with autoimmune diseases. It's not even "just" the diet/lifestyle part of dealing with celiac disease-- autoimmune diseases seem scary to me. I will keep trying to get through with the doc. I...
  7. deanna1ynne
    No, they haven't had biopsies. I guess I was just thinking about the not-very-fun prospect of a biopsy in these two, and.... gosh, I can't even come up with the right words to say what I was thinking.... I guess, since the numbers aren't nearly as high as for the child I originally posted about, I was maybe hoping that there's a chance they don't have celiac...
  8. deanna1ynne
    So I got results back from my three other kids today, and two more flagged high on some measures, but not super high, and I'm wondering - what other reasons are there for flagging these high? Is it always celiac related, or is it related to other auto-immune diseases, or is it possible that they're perfectly healthy, despite the high flags? With the...
  9. deanna1ynne
    We live a whole foods, plant based lifestyle, so I've always ground my own flour for her (so not enriched). Because of our lifestyle, we do bloodwork regularly to check for nutrient deficients, and she's generally been alright, but we do use some supplements as well. I will check to see if they are gluten free. Thanks for this reminder. Since she...
  10. deanna1ynne
    She did tell me tonight, when we talked about it, “it’s ok. As long as I only eat a little, I can handle it hurting.” So at least she’s agreed to keep eating it for another month. Thank you all so much. I feel so much calmer than before, at least understand a little better now.
  11. deanna1ynne
    Sorry for the confusing; yes, “celiac doc” many celiac specialist. Thank you for sharing that information about doctors in the UK. Do you know if it is also the case in the USA? (And my apologies if I accidentally posted on a UK board incorrectly!) i think we’ll try to keep her eating gluten, in any case (until we see the specialist, only, of c...
  12. deanna1ynne
    So I called the celiac clinic at childrens and got an appointment with a celiac doc and a nutritionist next month, and the rest of our family is going this afternoon for blood draws for celiac panels. What are my next steps likely to look like? Should my 8 yo continue eating wheat for four weeks until she sees the celiac doc and we get next steps from...
  13. deanna1ynne
    Oh. Wow. Ok. Thank you. I have a lot to think about and read about now, I guess.
  14. deanna1ynne
    Thank you. I reread your reply and will continue to try to get a hold of the doctor and discuss genetic testing. In the meantime, here are the results I have: Thank you. I reread your reply and will continue to try to get a hold of the doctor and discuss genetic testing. In the meantime, here are the results I have. She flagged two super high and...
  15. deanna1ynne
    Ok, I will drive over to the hospital and ask for a print-out. Thank you. I figured the numbers would be "standardized" somehow. But it just goes to show how little I know about tis. She's not below the growth curve per se, but we've always affectionately called her the runt, because she's around the 40th %ile in size, compared with all three of her...
  16. deanna1ynne
    They didn't give me any (it was over the phone). I'm sorry!
  17. deanna1ynne
    Backstory: 8 yo has refused to bread, pizza, muffins, pasta, etc. since she was 3. We didn't really think it was a big deal until she told us at 7 that it hurt her stomach. So we talked with her doc, got a celiac panel ordered, and made her eat wheat for 4 weeks beforehand. She cried everyday for two weeks, and was on the verge of not eating ANYTHING anymore...
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