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deanna1ynne

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Everything posted by deanna1ynne

  1. deanna1ynne
    She has been dairy free for six years, so she’d already been dairy free for two years at her last testing and was dairy free for the entire gluten challenge this year as well (that had positive results). However, now that we’re doing another biopsy in six weeks, we decided to do everything we can to try to “see” the effects, so we decided this past week to...
  2. deanna1ynne
    And thank you for your encouragement. I am glad that her body is doing a good job fighting it. I also just want clarity for her moving forwards. She was only 6 for the last round of testing and she's 10 now, so I'm also hoping that makes a difference. It was weird during her last round of testing though, because right before her biopsy, we'd upped her gluten...
  3. deanna1ynne
    The first negative biopsy in 2021 just said "no pathological change" for all the samples, and the second one in 2022 said "Duodenal mucosa with mild reactive change (focal foveolar metaplasia) and preserved villous architecture." So I think Marsh score 0 in both cases, though it's not actually written in the pathology reports. I'm really hoping to get a clear...
  4. deanna1ynne
    Thank you both very much. I’m pretty familiar with the various tests, and my older two girls with official dxs have even participated in research on other tests as well. I just felt overwhelmed and shocked that these recent results (which I found pretty dang conclusive after having scott clean labs just six months ago) would still be considered inconclusive. ...
  5. deanna1ynne
    Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating glute...
  6. 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...
  7. deanna1ynne
    Thank you!! I am super excited to read all of this!
  8. 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...
  9. 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.
  10. 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...
  11. 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...
  12. deanna1ynne
    That's really interesting! Thank you so much for sharing!
  13. 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...
  14. 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...
  15. deanna1ynne
    What about silicone baking molds?
  16. 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.
  17. 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...
  18. 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.
  19. 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.
  20. 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.
  21. 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...
  22. 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...
  23. 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...
  24. 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.
  25. 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!
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