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hi everyone,

i was looking for input from those who have had a follow up biopsy after goin gluten free to check for healing.

My mom had marsh 3B biopsy at diagnosis, with increase lamina propria inflammatory infiltrate (duodenitis).

After 2 years on gluten-free diet, she had a repeat biopsy which showed normal villi and no sign of celiac. however, her biopsy showed mild increase in lamina propria inflammatory infiltirate which is mild non-specific duodenitis and gastritis. anyone else non-specific duodenitis/ duodenum inflammation on follow biopsy but villi were healed ? 

I live in a country with no background or awareness about celiac, so i would appreciate your input.

fatima

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Hi Persianceliac,

I am sorry I can't help you with your question because I never had the endoscopy myself.  hopefully someone else will have a similar situation and come along with advice.

Here is a link to the Newbie 101 thread.  It has some general tips for getting started eating gluten-free.

Welcome to the forum! :)

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On December 19, 2016 at 10:08 AM, ironictruth said:

I read a couple of articles suggesting the reverse, inflammation before actual villi blunting occurs, so it might make some sense that she is healing and may be getting small exposures here and there. Or perhaps she has SIBO or something. 

Do keep us posted! 

Thanks for your input. Have you had a repeat biopsy after being gluten-free ? 

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On December 19, 2016 at 7:09 AM, cyclinglady said:

I have not had a repeat endoscopy/biopsies and I am not a doctor, but it appears that your mother is improving.  I hope someone is able to answer your specific question.  

How are your mother's symptoms?  Resolved?  

She never had any symptoms and was tested because her sister was diagnosed. 

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It has been three years since my diagnosis.  My symptoms at the time I was diagnosed was anemia (now resolved).  I was shocked that my GI (went in for a routine colonoscopy since I am over 50) even suspected celiac disease.  My biopsies revealed a Marsh Stage IIIB.  I have followed up with antibody celiac blood tests.  I do not feel the need for another endoscopy since i am not experiencing any symptoms that would suggest another illness like SIBO or Crohn's.  I do my very best to avoid gluten exposures.  Each glutening event  (unknown source) corresponds with my traveling away from home on long trips (over two weeks).  

 My celiac disease is not going to go away.  Do I have sustained intestinal damage?  Who knows?  (Recent research has shown that even a return  to "normal" celiac antibody tests do not necessarily reflect intestinal damage.) But will my treatment differ?  No.   I avoid the risk of a medical procedure that is not going to yield a great benefit at this point.   I continue to manage my diet, keep up  on research,  and work with my doctor to maintain my health.  

I think your Mom sounds like she is doing well despite residing in a country that is still learning about celiac disease.  

Disclaimer:  I really think the endoscopy and biopsies are essential in obtaining a celiac disease diagnosis, if it is possible to get (lots of reasons for not getting one).  It is also necessary if new symptoms present or the original ones never resolve as other issues beyond celiac disease might be present.  

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