To biopsy or not to biopsy.....

[Donna73]

 Im getting a lot of mixed messages about whether to go forward with a biopsy or not.  I had a blood test,  -- all came back positive for celiac and I have been gluten free now for almost week and am starting to slowly feel better.   

But, 1 doctor told me a biopsy is not necessary.  It was not really a close call and just go gluten free.  Another one said, no you really should get it done to confirm diagnosis.  I couldn't even get into a GI until end of January.  My understanding is that i would have to back on gluten for a few weeks before having the procedure.

Before my diagnosis, I put on 60 pounds and despite efforts, continued to gain and gain.  I suffered horrible hives on my elbows and knees for years.  I have had joint issues for years and the last 4 months, I was miserable with stomach issues with weight loss, pain, etc.  Sinus issues.  Swollen lymph nodes, and a feeling of exhaustion.  In just the week I have been off, everything is getting better.  Even my sinuses are better.  The thought of having to go back on gluten really scares me.  

Is there reallly that much of a risk of a false positive?  

[ravenwoodglass]

Will doctor number 1 give you an official diagnosis?  It sounds like your blood work was high enough that there is no doubt in that doctors mind. You are also responding well to the diet. If you could get the biopsy in a week or so then personally I would go for it. Since you can't have one until the end of January you would have two choices, stay on gluten until then or challenge for a few weeks before the procedure.  Reactions after we have started to heal can be more intense than they were before we went gluten free.

Personally I would go with doctor 1 as long as he will put your official diagnosis in your medical record. With storngly positive blood test results the chances of a false positive are basically nil.

[Donna73]

He did put the diagnosis in.  And so i have the diagnosis.  I couldn't get into the GI until January with everybody rushing to get in before year's end.