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Chuck1004

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  1. An update on my status. My local GI doc said it was a borderline diagnosis. No villi damage, elevated IEEs 7 years ago on biopsy, elevated ttg iga on first lab. Seven years following rare cheating and accidental contamination (fries at a local place weren’t as gluten-free as I thought) perfect repeat biopsy. I’ve been eating gluten daily (nor...
  2. Many thanks! I did read that article. I have no trouble believing I'm a celiac, but that both the IEEs possibly being from something else, and the potential false positives on the antibody lab makes me want to doublecheck. Hopefully I'll know in a couple of months.
  3. Somewhat. The staff from the celiac research center indicated it alone would not be sufficiently diagnostic for celiac disease, and as hasn't reoccurred in seven years, it may no longer ben an issue. The way I see it: I'm either a celiac who was diagnosed early before any damage occurred, the IEEs resolved as soon as a mostly gluten free diet was...
  4. And just to clarify from my initial post when I threw my situation out there, I've been under the impression for six years that I was diagnosed early prior to intestinal damage. A followup GI doc raised the point that research at MGH-Boston is showing that false positives are more likely than initially thought on the antibody lab and the IEE count in itself...
  5. Correct. Elevated antibody, increased leukocytes, no villi blunting and normal architecture in 2012, no evidence of celiac disease on followup biopsy in 2018, no evidence of elevated antibodies on followup labs, no notable reaction to gluten at any time.
  6. The only issue (and I have my first appointment next week to pursue this) is I have never had a reaction, never had evidence of villi blunting, and after six years of rare cheating and likely more frequent accidental contamination, showed no evidence of celiac disease on labs or in biopsy. All I have is a single positive antibody test from seven years ago...
  7. Can you please reference your source? I’ve discussed celiac disease extensively with three GI practices over the years, as well as my own reading, and I never saw the statistic that accidental gluten increases your risk of colon cancer by 4,000%.
  8. My PCP was trying to get to the bottom of a slightly elevated LFT, and the referred GI doc found a high anti ttg iga antibody. They did a biopsy which showed elevated leukocytes and normal villi and told me I was a celiac. My then-new GI doc followed up with an endoscopy six years later and came back saying no evidence of celiac disease, so keep up the...
  9. I'm completely asymptomatic, so a celiac diagnosis versus a celiac misdiagnosis certainly has a socio-economic impact. On the insurance question, would you mind expanding? My state has strong protections for pre-existing conditions, so I'm assuming this wouldn't be a tremendous burden in the event I shifted insurances? I've never had an issue finding...
  10. From your lips! I have never seen this calculator before! Looks like under 1.45 is the number to have and I'd top out at 1. My AST has always been normal. Last two labs from 2018 had it at 27. Last two ALTs were 44 and 50. Continuing our discussion of what's wrong with me, I ironically have pseudothrombocytopenia, so a lot of my platelet labs...
  11. No one has seen me yet to make that determination. When my enzymes were slightly out of range, my PCP sent me for an ultrasound which diagnosed a fatty liver. Blood work showed antitrypsin deficiency and the genetic test showed I was a carrier only. The enzyme then went as out of range as it ever got (Something like 72 on a 1-40 scale, which I believe...
  12. I have not. I was diagnosed at Massachusetts General Hospital. My daughter was seen by MGH who referred me to the director of the MGH Center for Celiac Research and Treatment. Several of the staff at my daughter’s office also worked there. I haven’t had the appointment yet. They indicated less reliance on the antibody test due to false pos...
  13. I just wanted to followup on this point directly. The biopsy did not show villi damage. We’re you basing the damage comment on the antibody or the leukocytes?
  14. I’m sincerely appreciative of all the responses! Due to my primary care network trying to keep me in-house, I’m going to be meeting with my local GI doc first rather than the specialist who suggested I may not be celiac, and may get bounced to see them if necessary. To hit a couple of the comments, I was never thrilled with the original doctors who...
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