Posted 24 October 2013 - 01:25 PM
Did your daughter have a complete celiac antibody panel or just the tTG?
Do you have a copy of the pathology report from the procedure? The early stages of celiac have cellular changes that are sometimes noted in the report, but are not conclusive for diagnosis.
How many samples were taken? Many doctors do not take enough as damage can be spotty and can not be seen by the doctor except in the most advanced cases.
It is time to remove ALL gluten for at least three months - if her symptoms improve request a retest of both Celiac Panel and nutrients. If symptoms and serology improve perhaps the doctor will review diagnosis.
I do think that a positive antibody test, low nutrient levels and the doctor's observation of possible minor blunting are reason enough to not completely dismiss Celiac Disease.
For now make sure you have written or electronic copies of all blood work along with both the procedural and pathology reports for the endo.
Hang in there
Undiagnosed Celiac Disease ~ 43 years
3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/25/13 - MCAD
Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile
My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free
Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS
Get PROPERLY tested BEFORE REMOVING GLUTEN.
ALWAYS independently research health related information found on internet forums/blogs.
"LTES" a Gem