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deanna1ynne

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by deanna1ynne

  1. deanna1ynne
    Well, I'm not sure what happened, but we upped her gluten intake significantly (gave her a biscuit made from straight up vital wheat gluten - no actual flour - estimated to have 20g of gluten each, based on how many we made and how many servings of gluten/protein was in the package) for 4 weeks, and then gave her two biscuits a day for the last two weeks...
  2. deanna1ynne
    Thank you!! I am super excited to read all of this!
  3. deanna1ynne
    Ok, I realize we’re totally in the realm of educated guesses here (so no disclaimer needed!! 😂) , but I’ve been thinking about this more and wondered if you have any estimates of how long the antibody titer would increase? Is that also highly dependent on the subject? I know I’ve read that 6-8 weeks may not be long enough for a gluten challenge in adult...
  4. deanna1ynne
    How sad! Thank you for your input. I will talk more with my husband. I’m really frustrated with the whole situation right now.
  5. deanna1ynne
    He just said he can't give an "official dx" without either a positive biopsy or ttg >10X the upper limit. And I have school aged children who need things to be "official" so that schools and other people will take it seriously. I don't like the idea either. I've been trying to figure out if I can cause it to "spike" somehow (e.g., feeding her gluten...
  6. deanna1ynne
    Thank you! I didn't know that kids are more likely to have negative biopsies - I'll definitely look into that more! The doc is willing to diagnose with 10X the upper limit, so recommended she continue eating gluten and test again in 3 months. He did also order an EMA which came back positive, so I agree that she likely has it. I'm thankful he didn't...
  7. deanna1ynne
    That's really interesting! Thank you so much for sharing!
  8. deanna1ynne
    For someone who has celiac disease, does higher gluten intake equate to a higher ttg? Or is there likely some ceiling to how high your ttg goes that's perhaps more dependent on your body and your own immune reaction? I know that ttg is supposed to return to "normal" with enough time on a strict gluten-free diet (except for refractory celiac), but is the reverse...
  9. deanna1ynne
    I have a 6 yo whose ttg-iga was 3X the UL when we first tested (not gluten free, but only had bread once a week or so) and 6X the UL when tested a month later (after feeding her a serving of bread every day), but whose biopsy was negative for celiac (4 samples from the duodenum and 2 samples from the duodenum bulb). D-gliadin igg was also over the upper limit...
  10. deanna1ynne
    What about silicone baking molds?
  11. deanna1ynne
    Yes, we are working on that side of things. My hope is to get kids doing “better,” and if grandma bakes and notices that is makes the grand babies sick, she is open to not baking here anymore. She is just reluctant to do it if it’s unneeded, but also doesn’t want to cause her grand babies pain.
  12. deanna1ynne
    I’m trying to do a kitchen purge now that we have official diagnoses for my children, and have a few questions: 1. I used to grind my own wheat flour 3+ years ago. I’ve only ground bean flours since then. Do I need to throw out my current stash of bean flours due to cross contamination in the grain mill (internals of the grain mill cannot be cleaned, bu...
  13. deanna1ynne
    That really is unfortunate! I can hardly imagine a greater disparity than what my 8 year old got with "everything looks really healthy!" on the scope vs. marsh type 3c "Complete Villous Blunting" on the actual biopsy.
  14. deanna1ynne
    Well, moot point, now. Her biopsy said marsh classification type 3c. It's crazy for me to think of how much damage that is, given that she was gluten free for 5 years (not 100%, but I'd guess a solid 99.5% - occasional things like soy sauce slipping in), and she's only been eating gluten again for two months.
  15. deanna1ynne
    That would be great for them, I think?! And it would make sense, given that the 8 yo was more-or-less gluten-free for the five years before we had her tested (she's been on gluten again for two months now). Gosh, it's going to be hard work to just wait on the biopsy results themselves and not wring myself into a mess imaging "what-if" scenarios. lol.
  16. deanna1ynne
    Whelp, all three girls ended up with endoscopies, two because they didn't hit the 10X threshold, one because she wanted to do it while she was eating gluten already anyway. But I guess we'll wait and see, because the GI doc who performed them said that, at least visually, everything looks perfectly healthy. She did qualify it with "it's certainly possible...
  17. deanna1ynne
    Good to know. I was following a fb group on celiac kids and someone whose husband worked in the medical field said that they knew the "inside" of the insurance industry enough to "know" that the dx may not be considered official without a biopsy. That made me nervous! lol. But she is just SO ready to be DONE. We have another appt tomorrow for two of my other...
  18. deanna1ynne
    So, our doc (celiac specialist) is TOTALLY willing to diagnose my most uncomfortable child on blood results alone - he just wants to repeat the blood tests and add an EMA test to the panel she had before. YEA!! But she is very scared that if she doesn't get a biopsy now, she'll have to repeat a gluten challenge at some point in the future, if someone...
  19. deanna1ynne
    This would make sense to me, because three of my results had “< 0.X” results, so I just figured it was the limits of what could be detected.
  20. deanna1ynne
    Ha ha - I’m not sure he’d eat 100% gluten free even if his test came back overwhelmingly positive!! 😂 But I’ll link him this thread and let him read it and see what he says!
  21. 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....)...
  22. 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 ...
  23. 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...
  24. 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...
  25. 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).
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