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amanda12

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by amanda12

  1. amanda12
    Thanks so much!
  2. amanda12
    Thanks for your response. I have already have been tested for RA and every other disease under the sun I feel! All blood levels and imaging came back normal. I sincerely appreciate your advise and input!
  3. amanda12
    I was diagnosed with Celiac disease with a biopsy at the end of January 2020. My doctor wants to do a repeat EGD next month, only 5 months after diagnosis. From all my reading this does not seem to be standard. I wonder if anyone could offer some insight on if there is any benefit with proceeding with this procedure so soon. The one benefit of getting...
  4. amanda12
    Thank you! I was actually searching to see it there was a group in Central Ohio yesterday and much not of searched the right thing. Thanks for this info, I asked to join! Great asset on top of this forum.
  5. amanda12
    Interesting because the two I saw were both younger! One was actually a fellow.
  6. amanda12
    Thank you I appreciate the kind words. I think they have just gotten into my head that they still dont seem to be certain that it is Celiac even though it's been diagnosed. At this point I can't think of any other auto immune diseases to ask to be tested for. I guess I'm so eager to get better I worry there is something else going on that the doctors are...
  7. amanda12
    Thanks for the input. I do have an official diagnosis of celiac disease. They gave that to be after the biopsy. They just keep saying its consistent with Celiac but not specific but with my labs they make the diagnosis. This new doctor just didnt seem like he was 100 percent confident. Sounds like based on one lab that isnt even Celiac relevant (Hla-b27)...
  8. amanda12
    My PCP is great, but I dont get the idea he is comfortable managing celiac disease. I do know he have no trouble referring me out. I will keep looking for a doctor and hopefully I will find one that is good. Columbus is a large city, you would think it wouldn't be this hard!
  9. amanda12
    I actually printed and took the celiac.org one with me to my appointment. The doctor didnt seem to care to look at it. I read labs and recommendations from the sheet during the appointment. I carry my folder of information and lab results with me each appointment. I just feel like I can't trust any doctor. I've tried researching GIs that specialize...
  10. amanda12
    Thank you both. This has just not been a good experience for me so far. I feel like I have just been bounced around the medical system for the last year to rheumatologists, neurologists and different primary cares. Each one just making me feel like it was all in my head. Then fast forward to the last few months where I researched and asked my primary...
  11. amanda12
    All, I was hoping for some advice and input. I met with my new GI doctor today and while he agrees my labs I first posted is a strong indicator of celiac disease that he was very surprised my HLA-B27 was negative. I was doing some research and getting mixed results on how often its positive in Celiac. I haven't been tested for the HLA-DQ2 or DQ8 yet...
  12. amanda12
    Great. Thanks for elaborating. I sincerely appreciate the advise!
  13. amanda12
    Thanks for the advise. I will take that into consideration. How long do you suggest do the fasting for?
  14. amanda12
    Great thanks. I switched doctors because I had poor experiences with mine and I don't see the new one until March 31st so I can talk to him more then about the issue. In the meantime I can switch to a non NSAID for any pain I may have (hopefully that decreases soon). Another question I had that I read about on this forum in some older posts was the...
  15. amanda12
    I don't think I had been taking a ton of OTC but I definitely had been taking more than I ever have in my life. As for alcohol I'd say I have 2 or so drinks on the weekends which I don't consider a lot. In the last few months I have had very little because I was on a med for a month that didn't allow alcohol (all of January).
  16. amanda12
    Pathology report came back with mild villous blunting with intraepithelial lymphocytosis in the 2nd portion of the Duodenum (appeared normal on endoscopy) and villous blunting with intraepithelial lymphocytosis in the duodenal bulb. This with my labs made the diagnosis of Celiac. I was told by a nurse that the damage was not specific to Celiac disease but...
  17. amanda12
    That's great for you, seems it doesn't always work out that way. I have seen 4 different rheumatologists, 3 different neurologists and two different primary care. None of which thought about GI or Celiac. I had a lumbar puncture, 3 different MRIs and pages of lab work. The GI doctor totally dismissed it with just the gliadin results since I had little...
  18. amanda12
    Thank you. This forum has just been fantastic and has provided so much information to me. It is great to talk to people that are going through what I've been through. Cant help to think how much pain, anxiety and testing I could of avoided in the last year if this would of been tested sooner. I asked for this to be tested. If I didnt, who knows how long...
  19. amanda12
    Thank you. I have had very little stomach pain either. Mostly severe joint pain, numbness tingling in my hand and feet and headaches. As I think back I did experience some stomach pain and nausea when I went to an all inclusive resort in the fall and probably ate way more gluten than I normally do.
  20. amanda12
    Thank you. Your response is extremely helpful. All the doctor told told me that did the scope is that scalloped mucosa could be Celiac disease but scalloped mucosa is not "specific" to Celiac. It was only found in the bulb with the second part found to be normal. I think I have been brushed off by my GI doctor because I am not having any major GI symptoms...
  21. amanda12
    Had my endoscopy today. Scalloped mucosa was found in the duodenum bulb. Second part of duodenum normal. Now I await the pathology results. Was told it would take 1-2 weeks.
  22. amanda12
    That was the conclusion I was getting from my hours of reading on the topic and labs, but was interested in getting feedback from others that I was understanding the literature. I will be sure to post once I get my results.
  23. amanda12
    Thank you, I appreciate the feedback. When I initially saw my GI doctor I only had the GLIADIN results back which she said was outdated lab and unreliable. Without having GI symptoms and no anemia she completly wrote off Celiac until my other labs came back. I just really want some answers.
  24. amanda12
    I have been through a year of severe joint pain, headaches and brainfog. I have been through numerous tests and asked my primary care to check for celiac on a whim. I have gotten the following labs back and was wondering if anyone can tell me the likeihood of a celiac diagnosis based on the below labs. I do have a biopsy scheduled, but am just very curious...
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