Post + Blood Test, Pre Endoscopy

[Jennyjeez]

A month ago I had a very positive blood test for celiac (it's the silent type--I don't have a lot of the GI symptoms that many of you do and I was only tested due to radical unexplained weight loss), and my doc told me to start eating gluten free. I have been, and really do notice a difference when I accidentally am exposed, and feel a bit better. However, there's a three-month wait list for the GI specialist. What I want from the endoscopy is not a diagnosis (I feel pretty comfortable that I have an accurate one), but to see how much damage has been done to my intestines. Do I need to continue to eat gluten for the next two months?

[sa1937]

A month ago I had a very positive blood test for celiac (it's the silent type--I don't have a lot of the GI symptoms that many of you do and I was only tested due to radical unexplained weight loss), and my doc told me to start eating gluten free. I have been, and really do notice a difference when I accidentally am exposed, and feel a bit better. However, there's a three-month wait list for the GI specialist. What I want from the endoscopy is not a diagnosis (I feel pretty comfortable that I have an accurate one), but to see how much damage has been done to my intestines. Do I need to continue to eat gluten for the next two months?

Welcome, Jenny! I think you have a very smart doctor!

You do need to continue eating gluten until your endoscopy if you are hoping for a diagnosis for celiac...if you go gluten-free now, you may have healed enough that the dr. can't see any damage or the biopsies will come back negative (even consuming gluten, the biopsies could come back negative if damage is patchy). So it's up to you. I think it's rather barbaric to continue to damage yourself just to satisify a doctor's curiosity although I did do that because I knew my adult daughter had a problem with gluten so I was hoping for an "official" diagnosis so she would take it seriously. She went gluten-free after her very positive celiac panel and skipped the endoscopy.

IMHO, if you had a very positive blood test for celiac, you have it. False negatives are quite common; false positives are not. Hope this helps a bit...