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Vanillabean

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About Vanillabean

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  1. Oh, it definitely struck me as very odd! It also says "no significant increase in intraepithelial lymphocytes". That's their favorite word I guess! My blood work pre-biopsy also showed increase lymphocytes and my primary doctor said it usually means increased inflammation. Doing all the things I can now---filing a complaint, I've emailed my doctors to tell them I'm upset and don't think I received proper care, I'm in the process of trying to see a naturopath that diagnosed a friend of a friend w celiac. I'm going to see if i can get the other blood work done with them---and I've been gluten free for a week and a half!
  2. Thanks Frieze, I'm planning on filing a complaint in the next few days.
  3. That's great, Gertrude! I'm glad your doctors sound more competent than mine. And that you're starting to feel better. I haven't had any abdominal or joint pain in the last few days, and I feel like I have more energy for sure. I've been feeling a little off/dizzy but that might be from gluten withdrawal. Good luck with everything!
  4. By the way, I got my biopsy pathology report and the doctor took 2 biopsies, not the recommended 4-6. It says no "significant villous blunting not seen." I don't know if I should laugh or cry---so frustrating.
  5. Thank you, this does feel helpful and reassuring. Did you end up getting blood tests again after going gluten-free? Do you have to worry about cross contamination as much as with a celiac diagnosis? How do you explain it to friends and family? Non-Celiac gluten sensitivity sounds so vague and I know it's dumb, but I worry about people not taking me seriously.
  6. I just got a call from the Kaiser GI department. The doctor who performed the endoscopy was supposed to call me with the results and instead the receptionist did. She said "Dr. X says your biopsy was normal and you do not have celiac disease." Word for word, that's it! So not only did I not get to talk to her the day of my procedure, but not at all! They are printing copy of the biopsy pathology report for me and I'll get it tomorrow. I want to see if it says how many samples they took. At this point, I still feel like crap, still have symptoms and I'm going to try a gluten-free diet to see how I improve, get blood tests again eventually.
  7. A quick update: I emailed my primary doctor and she is on the same page as the GI doctor, saying the Endoscopy looks normal. Even before we've gotten the biopsy back. By the way, I should mention I'm dealing with Kaiser in the Bay Area, CA and everything I've found about Kaiser on these forums is horrible and similar to my own experience. I specifically asked about all the components of the full celiac panel and that I would like to get it and all she said was: "The lab tests are not perfect. Although they may indicate an increased risk for celiac, they are not as specific as the biopsy." So, now we should just ignore the positive IgG? How am I supposed to know if I'm IgA deficient if they don't test for that? I replied and asked again and she said that Kaiser doesn't offer the full panel. Why not? And I said I want vitamin and iron tests and no reply to that yet.
  8. Gertrude, Sorry to hear you're going through the same exact thing. It makes me feel less alone to know you are experiencing this at the same time as me. It's a horrible feeling, and I'm already an anxious person so waiting just makes it worse. You are so right--it feels like a total bias on the doctor's part. They don't even address why there would be any abnormality in the blood tests...just that the IGa isn't positive. I did email my regular doctor today to ask about the full celiac panel and vitamin and iron blood tests to see if I have any deficiencies. I wonder what my EMA would be if that was included... I feel annoyed that I didn't even know there was a full celiac panel until after my endoscopy---they just made the referral for the biopsy right away and I wish we had more info beforehand because my copayment was expensive! I hope you get answers soon. If you're comfortable, could you reply here or message me when you find out a diagnosis? I will do the same.
  9. My current blood test from my regular only included the tTG, but I'm not sure why. More questions, but I feel prepared to ask both my regular doctor and the GI doctor. I agree with you, I think gluten is the culprit...I do feel ready for the challenge of going gluten-free, and I'm already daydreaming about all the pastries I can make. I think it'll be difficult at first and I may have to change jobs for a while (back to office work), but it would be cool to be able to share with other gluten intolerant people. I've even thought of teaching gluten-free/celiac friendly baking classes.... My biggest worry about being gluten-intolerant/celiac is navigating the social side of sharing food with friends and family and going out to eat, and then of course, long term health problems. But hopefully I'll have a clearer picture in the next week or two, it's just so frustrating having to wait and continue to feel sick. Thank you for walking me through the process of receiving my biopsy results and for your support!
  10. This is a really helpful reminder. I definitely will! Thanks.
  11. Hi, I'm new here. I'm a 30 year woman, also a professional baker/pastry chef, I'm working with flour 40 hours a week, and I suspect I have celiac. I just had my endoscopy yesterday and I seriously need to rant because I had a horrible experience. A few weeks ago I finally went to my regular doctor to get some blood work done. I have been having inconsistent stools, constipation, random abdominal pains, pretty regular bloating this last year. She initially just said it was probably IBS, but my lab work came back and showed 1: increased lymphocytes in my blood (sign of inflammation?), and she ran the tTG tests, the tTG IgA was in normal range, and the tTG IgG was positive. She said that the positive IgG shows some sort of gluten intolerance, possibly celiac disease, and referred me to the GI for an endoscopy/biopsy. I had to wait a few weeks for the endoscopy appointment---still eating gluten, and of course, working with gluten... I did a lot of research on celiac which made me realize I've been experiencing other things that could be tied to it. Headaches, back pain, brain fog, joint and bone pain, and over the last 3 years (since i started my bakery job), I've gotten crazy canker sore outbreaks on my tongue a couple times a year. Fast forward to yesterday---I went to the GI department for my endoscopy and biopsy and it was such an unprofessional experience! My doctor came in and I barely got a word in before they started sedating me. I wanted to tell her about my symptoms, ask how many tissue samples they would take, but all she said was "Well, your IgA looks normal, so it's very unlikely it's celiac disease." It happened so fast and then I was knocked out from the drugs! No mention of the positive IgG result! Then, I woke up in the recovery room, and the doctor was nowhere in sight, the nurse just handed me a piece of paper that said this: "Endoscopy results: The esophagus, stomach, and small intestine are all normal. I took some tiny biopsies to confirm no celiac disease." No mention of how many biopsies, and how can the dr. say they're all normal just by looking at them?? and then it said this: "Your symptoms are due to functional dyspepsia and irritable bowel syndrome, benign conditions of the intestinal tract that causes symptoms of pain in the absence of any damage or injury". Uhm, no! This definitely doesnt feel like indigestion, I don't have acid reflex. Also, there was no talk of my symptoms, so... What's the deal people? Why did the GI doctor not mention the positive IgG test? Has anyone else had similar bloodwork results to me? Why are they so fixated on IBS when my symptoms seem worse and I have signs of inflammation and possible gluten intolerance?? Any insight would be appreciated while i wait for the biopsy results, (I'm supposed to get them within 7-10 days). Thank you!
  12. oops, I meant to post this in Pre-Diagnosis and i'm not sure how to delete a post! Sorry, I'll post this there now...
  13. Hi, I'm new here. I'm a 30 year woman, also a professional baker/pastry chef, I'm working with flour 40 hours a week, and I suspect I have celiac. I just had my endoscopy yesterday and I seriously need to rant because I had a horrible experience. A few weeks ago I finally went to my regular doctor to get some blood work done. I have been having inconsistent stools, constipation, random abdominal pains, pretty regular bloating this last year. She initially just said it was probably IBS, but my lab work came back and showed 1: increased lymphocytes in my blood (sign of inflammation?), and she ran the tTG tests, the tTG IgA was in normal range, and the tTG IgG was positive. She said that the positive IgG shows some sort of gluten intolerance, possibly celiac disease, and referred me to the GI for an endoscopy/biopsy. I had to wait a few weeks for the endoscopy appointment---still eating gluten, and of course, working with gluten... I did a lot of research on celiac which made me realize I've been experiencing other things that could be tied to it. Headaches, back pain, brain fog, joint and bone pain, and over the last 3 years (since i started my bakery job), I've gotten crazy canker sore outbreaks on my tongue a couple times a year. Fast forward to yesterday---I went to the GI department for my endoscopy and biopsy and it was such an unprofessional experience! My doctor came in and I barely got a word in before they started sedating me. I wanted to tell her about my symptoms, ask how many tissue samples they would take, but all she said was "Well, your IgA looks normal, so it's very unlikely it's celiac disease." It happened so fast and then I was knocked out from the drugs! No mention of the positive IgG result! Then, I woke up in the recovery room, and the doctor was nowhere in sight, the nurse just handed me a piece of paper that said this: "Endoscopy results: The esophagus, stomach, and small intestine are all normal. I took some tiny biopsies to confirm no celiac disease." No mention of how many biopsies, and how can the dr. say they're all normal just by looking at them?? and then it said this: "Your symptoms are due to functional dyspepsia and irritable bowel syndrome, benign conditions of the intestinal tract that causes symptoms of pain in the absence of any damage or injury". Uhm, no! This definitely doesnt feel like indigestion, I don't have acid reflex. Also, there was no talk of my symptoms, so... What's the deal people? Why did the GI doctor not mention the positive IgG test? Has anyone else had similar bloodwork results to me? Why are they so fixated on IBS when my symptoms seem worse and I have signs of inflammation and possible gluten intolerance?? Any insight would be appreciated while i wait for the biopsy results, (I'm supposed to get them within 7-10 days). Thank you!
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