Alibu
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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Everything posted by Alibu
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Well, I've made if from the pre-diagnosis forum to here! I've been diagnosed with "latent" or "potential" celiac and my doctor has suggested me to go gluten-free before my appointment with him in October (first available, LOL). My ttg-iga was 152, my EMA was positive, I have the gene, but my biopsy was negative (and he took 12 samples), so it makes sense...
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@knitty kitty I see, thank you!! Yes, basically the biopsy just said "normal villous architecture." It didn't give any kind of Marsh score at all, but it sounds like it would be a 0 based on the biopsy report, which is why he's saying it's Latent or Potential celiac. It's just weird because I know in Europe if I was a child, they wouldn't even do the biopsy...
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I can't remember if I tried taking thiamine at one point and it didn't agree with me, or if I tried it but didn't take it very long. I may have to try that out again. I have taken magnesium threonate in the past and unfortunately it did not help with my migraines. I do take a monthly injectable migraine preventative and I know not to eat after 8pm or I...
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From what I understand, my high antibody level and EMA positivity rule out NCGS because those are not typically elevated in NCGS. That's what I've read anyway? My doctor is calling it "potential" or "latent" celiac disease, which honestly is just frustrating. I don't have celiac but I also don't not have celiac. I'm just in limbo and I can...
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@knitty kitty My whole family has migraines and I started getting them at age 19, so I'm not sure mine are related to gluten, although I do feel like obviously the more inflamed my whole system is, the more likely I am to suffer from more of these things.
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@knitty kitty Thank you for those, I will definitely bring them up! I did send a message to my doctor basically asking what they think so I'll go from there. He may very well just decide that this was enough to diagnose celiac, but I have no clue what his thoughts are right now. I also asked for a second opinion on the pathology.
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@knitty kitty Thank you for your response!! So do you think my doctor might still diagnose celiac even with the negative biopsy? At this point I'm just wondering like do I have to be super careful when I eat places for cross-contamination, or do I just have to eat gluten free and not worry about the damage so much as the symptoms, you know? Like with celiac...
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MY BIOPSY WAS NEGATIVE!!! HOW?? Obviously I'm thrilled it was negative, but I'm so confused now.
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I just had my endoscopy the other day and the doctor took 12 samples because he said if we're going to find something we're going to find it today LOL. But when he got down there, he said everything looked good. So I have it in my head again that it's going to be negative because everyone I've heard of who had a positive biopsy had their endoscopies where...
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Oh I definitely am doing that! I'm having a "last hurrah" leading up to the endoscopy and I am making sure to eat as much gluten as I can now. I will say I am BLOATED but I've been this way for so many years, it's kind of my norm. Just a couple more weeks until I have answers though, I hope!
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@Scott Adams thank you again! You definitely 100% get it!! It's so helpful to know that what I'm going through is normal and part of the process. My endoscopy just got scheduled for June 10 (I'm going to be traveling or else they could have gotten me in earlier) so I have 2 more weeks of eating gluten. I'm assuming I should just go to the endoscopy...
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Thank you so much for your reply! I keep asking ChatGPT if it can be wrong and it basically keeps telling me the same thing as you did, but then I'm like oh I was so ready to embrace the diagnosis back in 2017 and then they were like nope, you're good, carry on, so I think I'm just really guarded and thinking it's going to be a repeat of last time. Of course...
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I was tested back in 2017 and my TTG-IGA was mildly elevated (an 11 with reference range <4) but my EMA was negative and biopsy was negative. Fast forward to 2 weeks ago where I was like y'know what, I still have so many symptoms and I'm always so sick, I should repeat this, thinking it was not going to be positive. I also found out through 23 and me...
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Question about PPV and NPV of TTG and EMA
Alibu replied to Alibu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
I know, I know! I'm so impatient, LOL!! I'm just one of those people who does not do well in limbo. So I know want to KNOW, which makes me try to seek out answers. I've had a hiatal hernia for years and years, as I've had reflux since I was like 18 (I'm 41 now). I guess the other stuff, I just don't know. I think it depends on what they... -
As I wait (impatiently) for my biopsy results, I've been doing a lot of research about my conflicting test results (positive TTG at 11, where positive is anything over 4, and negative EMA). Everything I've been reading has said that TTG has a positive predictive value of about 90% and that EMA has a negative predictive value of 100%. So according...
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While I'm waiting on my biopsy results, I thought I'd share my endoscopy report to see if anyone had anything to say about them. My TTG was elevated at 11 (lab range was anything over 4=positive), but EMA negative. No IGA deficiency. Pictures included had following captions: 1) Hiatal Hernia 2) Normal mucosa in the whole examined duodenum ...
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I have been struggling with rosacea for years but this is new and different. It's all on my neck under my chin, and I feel like I should be able to squeeze them, but there's nothing in them, if that makes sense. I do have a lot of very small bumps along my jawline but they're all under the skin and I can squeeze some white stuff out of them. I know, gross...
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1st of all my GI is AMAZING. Not only is he a great doc, but he also is just a great guy. We had a great time, LOL!! The findings were: 1) Hiatal hernia 2) Duodenal tissue looked normal, but he took 10 biopsies to be sure. 3) I may have Eosinophilic Esophagitis, which is an chronic allergic/immune response to a certain food (we don't know what...
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My endoscopy is this afternoon. I'm a little anxious because I just want to get it over with. I honestly think there's a high probability of it coming back negative, but it drives me crazy that I won't know for like a week or two, especially with the holiday. Should they tell me how many samples they took? Anything I should make sure to ask, etc....
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A little background: I was recently tested for celiac and my results are not conclusive (positive TTG, negative EMA). I have a biopsy scheduled for tomorrow. I asked my pediatrician if my kids (ages 14 and 11) need to be tested because my TTG was positive, and he ordered the test (he'll pretty much order anything, LOL). Anyway, I'm totally freaking...
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Oh wow!! Ok, good to know, thank you!
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Hi, I have an endoscopy scheduled on Thursday to confirm celiac. I have a positive tTG IGA test but negative EMA. I know they'll take some biopsies and those will take 1-2 weeks to come back, but can they see the damage by sight too? Is it also possible to see absolutely no damage, but then the biopsies come back showing damage? I'm just going crazy...
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In shock and confused!
Alibu replied to Alibu's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Thank you for your response! I guess I'm trying to cling on to the hope that it's a false positive with the negative EMA, LOL. I have been checked for lupus a few times and it's always negative, so that's good. I really didn't expect this to come back positive at all. And yes, I'm eating ALL the gluten while I still can!! -
Hi all! I can't even believe I am on this forum right now! I asked my doctor to run a Celiac Disease Panel to rule it out after dealing with so many digestive and systemic issues for years now. I never in my life expected it to come back positive, but the results are a little confusing and I keep finding conflicting info online. Any help is appreciated...
