deanna1ynne
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Does more gluten = higher ttg?
deanna1ynne replied to deanna1ynne's topic in Coping with Celiac Disease
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... -
Does more gluten = higher ttg?
deanna1ynne replied to deanna1ynne's topic in Coping with Celiac Disease
Thank you!! I am super excited to read all of this! -
deanna1ynne reacted to a post in a topic:
Does more gluten = higher ttg?
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deanna1ynne reacted to a post in a topic:
Anything else to ask the doctor?
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Does more gluten = higher ttg?
deanna1ynne replied to deanna1ynne's topic in Coping with Celiac Disease
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... -
How sad! Thank you for your input. I will talk more with my husband. I’m really frustrated with the whole situation right now.
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deanna1ynne reacted to a post in a topic:
Anything else to ask the doctor?
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deanna1ynne reacted to a post in a topic:
Anything else to ask the doctor?
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deanna1ynne reacted to a post in a topic:
Anything else to ask the doctor?
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deanna1ynne reacted to a post in a topic:
Anything else to ask the doctor?
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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...
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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...
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Does more gluten = higher ttg?
deanna1ynne replied to deanna1ynne's topic in Coping with Celiac Disease
That's really interesting! Thank you so much for sharing! -
deanna1ynne reacted to a post in a topic:
Does more gluten = higher ttg?
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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...
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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...
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What about silicone baking molds?
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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.
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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...
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Interpreting test results
deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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. -
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Interpreting test results
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Interpreting test results
deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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. -
Interpreting test results
deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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.