deanna1ynne
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Scott Adams reacted to a post in a topic:
Inconclusive results
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Inconclusive results
deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int... -
Scott Adams reacted to a post in a topic:
Inconclusive results
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Wends reacted to a post in a topic:
Inconclusive results
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Inconclusive results
deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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... -
Inconclusive results
deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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... -
Inconclusive results
deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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... -
Wends reacted to a post in a topic:
Inconclusive results
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Inconclusive results
deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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. ... -
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...
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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...