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AllisonMcM

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About AllisonMcM

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  1. Hi there - no I did not go gluten free until after the endoscopy.
  2. Are my numbers considered high positive, in your opinion? Thanks for your response!! Thank you! Seeing as his toothbrush contains gluten, would drinking water before seeing me be better?
  3. Hi Ennis, Thanks for your response. Even if I am getting glutened from kissing my boyfriend and eating out, wouldn't I most likely feel some kind of improvement, seeing as I went from lots of gluten at every meal to trying to eliminate it completely? It seems like I would notice some difference, even if I continued to have symptoms sometimes. I've really noticed nothing. Also, can celiacs never kiss their gluten-eating partners without getting sick? That seems pretty extreme. And I do vet the restaurants we go to in terms of knowledge about celiac disease and I am careful to ask questions about ingredients, handling, not putting gluten-free bread in the toaster, etc. I really appreciate you sharing your thoughts - just trying to get to the bottom of this! My concern now is that it's not celiac and it's something else raising my blood levels... And yes, we got rid of all cutting boards, pans, plastic measuring spoons, pots that were not stainless steel and I have checked all my hair products and lotions.
  4. Hi All, After mild symptoms like worsening gastritis, stomach cramps and loose/more frequent stools, my blood was tested in late May 2018 (only IGA serum, TTG IGA and EMA). IGA serum was normal, EMA was negative but TTG IGA was positive (3X normal limit). I was referred to a gastroenterologist for a consult and endoscopy. Gastroenterologist tested DGP IGA and IGG - DGP IGG was 4X normal limit, DGP IGA was normal. In the consult, gastro doc told me she was certain I had celiac as all my symptoms, including occasional night sweats and random nausea, fit. I had endoscopy and 6 biopsies were taken from my small intestine and duodenum - all came back negative. My gastro doc says that she has never had a patient with positive serology but negative biopsies, which according to this forum is not all that uncommon, and she doesn't know what to tell me. I understand that the biopsies could have missed the damage. However, I have been gluten-free for two months exactly and I feel little to no improvement. I have been strict about cross-contamination (though I eat out a few times a week which is always risky) and I've made a few mistakes -my boyfriend and I shared a tube of toothpaste until last week when I realized it could be CCing me. But I don't feel like I'm fine and then sick when I get glutened. I feel like literally nothing has changed since going gluten-free. My gastro doc told me that, given my negative biopsies and poor response to the diet, that she does not think I have Celiac disease. She can give me no answers for why my ttg iga was 3X the normal limit and dgp igg was 4X the normal limit. She literally shrugged her shoulders when I asked her why they could be that high if I did not have Celiac. I'm incredibly frustrated. My plan until today was to be strictly gluten-free until January (6 month mark) and then have my blood retested and see if the levels have dropped. Now, I'm not even sure if that will tell me definitively if I have it so I'm tempted to have my blood retested now and then just start eating gluten again and see if I feel worse. And if I don't, just keep eating it and go back to my previous normal life. I'm wondering what all of you would do if you were me: if you were told you didn't have Celiac but were worried about elevated blood levels? Working hard to be gluten-free and seeing/feeling zero results. Would you give it more time? Retest blood now? I'm at a loss and my doctor is providing no support. I appreciate your thoughts! Allison
  5. Hi All, After positive TTG IGA but negative biopsy, I had the remaining celiac blood panel run at the recommendation of several on this forum. Now, my total blood results are: TTG IGA - positive (3X normal range) IGA serum - normal EMA - negative DGP IGG- positive (4X normal range) DGP IGA -negative I have read in a few different places online (one of them a research study) that the DGP IGG test is 100% selective - meaning that mine would not be elevated for any other reason than Celiac disease. My doctor still finds my results inconclusive and suggested a small bowel enteroscopy but admitted that it will not necessarily find the damage either (even if it exists). What is the consensus on the specificity of the DGP IGG test? Could my antibodies be high for any other reason? I appreciate everyone's time and advice Allison
  6. Thank you all for the replies! I got blood drawn today for the four remaining tests on the celiac panel that were not run last month (I had the EMA run last month as well as the TTG IGA - EMA was negative). I hope that these results will give me a more definitive idea. Thanks again! Allison
  7. Hi All, I have been following this forum since testing positive for Celiac via one blood test a month ago (TTG IGA: 43 (normal range <15). I wanted to confirm my diagnosis via biopsy so I scheduled an endoscopy which I had last week. I just received the biopsy results and they were: no sign of Celiac but evidence of Barrett's Esophagus. I've been reading on this forum since last week how easy it is to miss Celiac via endoscopy and my doctor only took 3 biopsies. I was told by a nurse practioner in the Gastro office that my positive TTG IGA test translated to about a 98% chance that I have Celiac so I find it likely that the biopsies missed the damage. Regarding Barrett's Esophagus, I have burning gastritis pain every day which I could attribute to that but I have many other symptoms that BE would not be causing (stomach cramps, frequent/loose stools, chronic fatigue, night sweats). I am very frustrated that the biopsies did not confirm my diagnosis. Has anyone else had a positive TTG test but negative biopsy? I am planning to go off gluten starting today and see how I feel. If anyone has advice or a similar experience, I would appreciate hearing from you! Thanks! Allison
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