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5 years post diagnosis, flare up?

Kathryn T
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Kathryn T Rookie
Kathryn T
Posted

Hi, diagnosis by endoscopy and blood tests in 2016, Marsh 3b damage. Strict gluten-free diet since, no change to HH or diet.

  In January 2021, a heart stent and 4 days in hospital, in late March ended 2nd Covid vaccine. Many new meds.

Early April began ongoing serious diarrhea with pain in upper abdomen, daily. Many fecal tests for everything, all negative. This continues through July when decal tests repeated, and endoscopy done again, still marsh 3b, diagnosis as “non responsive”.

Continuing strict gluten free diet, iron and ferritin levels still not responding.. but only stated Easy Iron and FloraVital one week ago.

Any other suggestions? Nutritionist has confirmed I should be correct in what I’m doing, no suggestions from her. 
What am I missing???

  Thank you!

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RMJ Mentor
RMJ
Posted

You’ve probably already checked, but any chance one of the “Many new meds” has gluten in it?

Kathryn T Rookie
Kathryn T
Posted
  • Author

I actually finished checking this morning… there are 2 out of 5 that need a different manufacturer!

  I’m not sure that small amount would make a difference, but I’ll call the pharmacy on Monday!

 Thank you!!!

Scott Adams Grand Master
Scott Adams
Posted

Yes, search all of your meds here:
https://dailymed.nlm.nih.gov/dailymed/

Also, if you eat outside your home, and especially in restaurants, you could be getting small amounts of cross contamination which keeps the autoimmune reaction going that leads to villi damage, low iron, etc.

Kathryn T Rookie
Kathryn T
Posted
  • Author
4 minutes ago, Scott Adams said:

Yes, search all of your meds here:
https://dailymed.nlm.nih.gov/dailymed/

Also, if you eat outside your home, and especially in restaurants, you could be getting small amounts of cross contamination which keeps the autoimmune reaction going that leads to villi damage, low iron, etc.

Thank you for the updated list!

  We’re very much home bound, so it’s on me… 

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    • trents
      Coeliac or not coeliac

      By trents · Posted

      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
    • cristiana
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      Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal.  My TTG score was completely through the roof at the time, greater than 100 which was then the cut off max. for my local lab.  Yet when my biopsy results came back, I was told I was stage 3 on the Marsh scale.  I've come across the same thing with at least one other person on this forum who was told everything looked normal, but the report was not talking about the actual biopsy samples, which had to be looked at through a microscope and came back abnormal.
    • trents
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