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Tall Holly

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

Everything posted by Tall Holly

  1. Tall Holly
    Just thought I would share my findings from Mayo in case others are going through the same thing. Brief recap as well 1. 2018 endoscopy showed increased IEL’s but celiac blood work negative and villi were fine. Wasn’t told about it. 2. Repeat endoscopy May 2 of this year because of ongoing and worsening stomach issues since January (after a b...
  2. Tall Holly
    I think it's because they aren't checking for celiac anymore. Since both of my endoscopies came back the same 5 years apart (gastritis and increased IEL's) and two rounds of celiac blood work came back negative. I also have good iron levels which indicate not being celiac from what they explained. They were just miffed that the old clinic did not do a colonoscopy...
  3. Tall Holly
    Have you had an endoscopy? My bloodwork for celiac is negative, but I have increased leukocytes in my duodenum. This landed me a diagnosed of NCGS by Mayo Clinic. However, they also believe I have post-infectious IBS after a terrible round with Covid in January. The pain from the IBS flare ups is absolutely unreal. I sweat and almost pass out. I admittedly...
  4. Tall Holly
    Only two biopsies. However, I was able to go to Mayo Clinic for a second opinion. I just saw them on Monday and have a good plan! They diagnosed me with NCGS based on my current biopsy reports and blood tests. However, they are repeating the endoscopy and adding a colonoscopy. I'll get that done on May 31st! They also believe I have post-infectious IBS from...
  5. Tall Holly
    No word on the blood test but the biopsy did come back! Both the duodenum and the bulb showed increased IEL’s again with normal villi. I really wish the doctor would have taken more biopsies. I also looked at my ast and alt- they have doubled in the last year but are like a point under being out of range. So still normal at this time. Who knows w...
  6. Tall Holly
    Thanks guys. I am still waiting on my blood results... it's been 9 days! The last time I had it done in 2018 it only took 5 days but it was negative. I'm wondering if a trigger/reflex test takes longer if there is a positive. I'm just tired of waiting!
  7. Tall Holly
    Thanks. There is so little information out there. I assumed it wasn’t nearly as restrictive. You know what they say about ASSuming.
  8. Tall Holly
    Had my endoscopy today which showed gastritis. I had gastritis at my 2018 endoscopy as well. I didn’t know you could have it for 5 years! 2018 edg also showed increased IEL’s but no atrophy, so no dx of celiacs (but just found out last month that it probably means I have ncgs). Only one spot biopsied in 2018 so I asked how many he would take today since the...
  9. Tall Holly
    This is great information. If I'm reading this correctly, a Homozygous DQB1*02 has a 1:26 chance even if they don't carry DQ2*DQA1*05. Is that right? Waiting on my celiac panel but was able to find out through Ancestry that I am homozygous DQB1*02 01 (but don't carry DQA1).
  10. Tall Holly
    My tTg was 1 and my immunoglobulin A was 210.
  11. Tall Holly
    I’m on a journey to figure out my stomach issues. They began in 2018 and I had an endoscopy showing chronic inflation of my stomach and esophagus. Took medication and went in my merry way. I also had a celiac disease blood test at that time which was negative. Fast forward to January 23. I had a terrible bout with covid GI and have been battling i...
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