Blood test vs. biopsy diagnosis

[Chrysanthemum]

November of 2018 I received a positive celiac blood panel. I also know I have 2 celiac genes from genetic testing. 2 weeks later, I found out I was pregnant. 
My son had severe IUGR & failure to thrive. I found out this is common for undiagnosed moms with celiac disease. I live in a rural area, with poor medical care. When I went to my follow up with the GE she handed me a pamphlet on celiac disease. So, for this pregnancy, I made the decision to go completely gluten free. Baby girl was the biggest of all my babies (but still under 6lbs at full term). 

With that being said, now my GE wants me to go back on a regular diet so I can do the biopsy. At this point I have been gluten-free for 18 months. My blood panel this time came back negative. I know normally testing is supposed to be done before going gluten-free, but I felt I had no other option in this situation and none of my many doctors could advise me on the proper protocol. Even my GE seems neutral on whether the biopsy is absolutely necessary. My question is: is it really worth it or necessary to get the full biopsy at this point? If so, will 3 weeks of a normal diet be enough to show the damage after 18+ months of being gluten free? 

Has anyone had experience with going gluten free for a long period of time and then getting the biopsy done? What was your experience?

tl;dr: I’ve been gluten free for 18 months after positive blood panel. Now doc wants to do a biopsy where I return to a normal diet for 3 weeks. Is it worth it?
 

 

 

 

 

[cyclinglady]

Hi!  Dr. Allessio Fasano, a leading celiac disease researcher, is NOT recommending a gluten change during this COVID-19 crisis which may last for three years!   It can be dangerous for some and you have a family to rear.  This just came out:

I had anemia when I was diagnosed.  No huge GI issues.  Had significant damage though.  Now when I have gluten?  Yikes!  I am out for a few months!  The last time, I developed chronic autoimmune hives and a third autoimmune disorder.  My hubby went gluten-free some 12 years before my diagnosis.  He refuses to do a challenge (we like to pay our bills).  He has thrived on a gluten-free diet.  What nut would adhere to a diet for 20 years if it did not work?  

Think carefully.  Do your research.  

 

[Chrysanthemum]

7 hours ago, cyclinglady said:

Hi!  Dr. Allessio Fasano, a leading celiac disease researcher, is NOT recommending a gluten change during this COVID-19 crisis which may last for three years!   It can be dangerous for some and you have a family to rear.  This just came out:

I had anemia when I was diagnosed.  No huge GI issues.  Had significant damage though.  Now when I have gluten?  Yikes!  I am out for a few months!  The last time, I developed chronic autoimmune hives and a third autoimmune disorder.  My hubby went gluten-free some 12 years before my diagnosis.  He refuses to do a challenge (we like to pay our bills).  He has thrived on a gluten-free diet.  What nut would adhere to a diet for 20 years if it did not work?  

Think carefully.  Do your research.  

 

I definitely wasn’t planning on doing it until after the pandemic, because I obviously need to be 100%. The longer I am gluten free, the less willing I am to get back on a regular diet for an official diagnosis. Thank you for sharing that insight from a doc! I didn’t find that in my research.