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follow up endoscopy post dx

MADMOM
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MADMOM Community Regular
MADMOM
Posted

how many of you have actually had a follow up endoscopy post dx and gluten-free diet?  if yes how many years after and have you continued to followup regularly 

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Scott Adams Grand Master
Scott Adams
Posted

I've never had a follow up endoscopy after my initial one that was used to diagnose me, so none of my doctors in the last 26+ years have followed the protocol for treating celiac disease patients (all of my doctors have known that I have CD). Unfortunately we've learned via many other forum members here that my experience is the norm, rather than the exception.

RMJ Mentor
RMJ
Posted

I was unable to have an endoscopy when diagnosed via antibody levels. (I have a bleeding disorder and my former hematologist wouldn’t prescribe the necessary medication to prevent bleeding from biopsies because I had no celiac symptoms).  I had an endoscopy along with routine colonoscopy four years later (new hematologist) and still had Marsh 3a damage. My DGP IgA levels were also still positive at that time.  My antibody levels are now normal but no gastroenterologist has suggested another endoscopy.

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