Positive biopsy, carry gene variant but negative blood tests

[Binti1962]

Hello, i need some input. Two years ago I had an upper endoscopy with 6 biopsies showing some interepithelial lymphocytes and shortened villi so I was sent for blood work which came back negative but I had been on a gluten feee diet for 2-3 months prior to bloodwork.  What are the chances I had a false negative with the blood tests?  I’ve now been on a gluten free diet for 3 days and the change in my intestinal issues is remarkable.  Painful joints feel slightly better too. What should I do?  Oh, I also carry a gene which increases the likelihood of celiac.  Should I go back to eating gluten and ask for the blood tests to be repealed ???

thanks; Sarah

[kareng]

12 minutes ago, Binti1962 said:

Hello, i need some input. Two years ago I had an upper endoscopy with 6 biopsies showing some interepithelial lymphocytes and shortened villi so I was sent for blood work which came back negative but I had been on a gluten feee diet for 2-3 months prior to bloodwork.  What are the chances I had a false negative with the blood tests?  I’ve now been on a gluten free diet for 3 days and the change in my intestinal issues is remarkable.  Painful joints feel slightly better too. What should I do?  Oh, I also carry a gene which increases the likelihood of celiac.  Should I go back to eating gluten and ask for the blood tests to be repealed ???

thanks; Sarah

If you were gluten-free for months before the blood work, it should be negative.  It is meaningless as a test for Celaic at that point.  IF you have been eating gluten for the last 2 years, keep eating it and get a new blood test.  

[Binti1962]

Thank you!  I’ll Get retested. 

[cyclinglady]

If you are going to get retested, ask for the complete celiac panel (EMA, TTG and DGP — both IgA and IgG versions.  Why?  I am one of the oddballs who has never tested positive (even in follow-up) on the popular and most commonly ordered TTG.  

If my GI had not ordered the complete panel, my diagnosis would not have been made.  I had a positive on the DGP IgA only.  My biopsies revealed a Marsh Stage IIIB.  

[Binti1962]

Thanks,  Cycling Lady!  I’m going Thursday so that is helpful to know.