First GI visit 2 years post blood test diagnosis

[Tuesday]

I was diagnosed 2 years ago with an antibody level over 3,000, had many symptoms, and couldn't tolerate dairy.  I started to feel better almost right after starting the gluten free diet and could tolerate dairy again 3 months out.  My blood test was 2 at 10 months post diagnosis.  I am completely confident in my diagnosis.

My primary care doctor did not refer me to a GI doctor at the time of diagnosis.  My primary care doctor now wants me to have a consult with a GI doctor as he thinks he should have sent me there at the time of diagnosis for a biopsy.

Does anyone have experience with not seeing a GI doctor until 2 years post diagnosis?  Is there any reason to get a scope 2 years out when I have done well on a gluten free diet?  I plan to have an office visit with the GI and see if there is any reason for a biopsy besides diagnosis confirmation.  Any other ideas of what I should ask the GI doc?

I'd appreciate any advice or other's experience.

[cyclinglady]

1 hour ago, Tuesday said:

I was diagnosed 2 years ago with an antibody level over 3,000, had many symptoms, and couldn't tolerate dairy.  I started to feel better almost right after starting the gluten free diet and could tolerate dairy again 3 months out.  My blood test was 2 at 10 months post diagnosis.  I am completely confident in my diagnosis.

My primary care doctor did not refer me to a GI doctor at the time of diagnosis.  My primary care doctor now wants me to have a consult with a GI doctor as he thinks he should have sent me there at the time of diagnosis for a biopsy.

Does anyone have experience with not seeing a GI doctor until 2 years post diagnosis?  Is there any reason to get a scope 2 years out when I have done well on a gluten free diet?  I plan to have an office visit with the GI and see if there is any reason for a biopsy besides diagnosis confirmation.  Any other ideas of what I should ask the GI doc?

I'd appreciate any advice or other's experience.

As long as your symptoms have resolved and your blood tests have come down, I do not see the need to get a repeat scope.  If you are experiencing symptoms now or in the future, it might be nice to rule out other issues that may develop.  I would not consider a two to four week challenge for a firm diagnosis, but that is just me.  You should talk to the GI about the benefits.  

I am formally diagnosed, but my hubby went gluten-free based on the advice of his GP and my allergist.  He never had any testing.  Well, the diet worked.  He has maintained it for 17 years now (who else would stick to to a gluten-free diet for that long unless they were sure gluten makes them sick).  While it is nice to have a formal diagnosis, he does not want to make himself sick just to reinforce what he already knows.  My diagnosis does however, makes it easy for our kid to get tested and may be helpful if I end up in jail or in a nursing home.  We shall see.