First Celiac Appointment

So, I went to go see Dr. Alessio Fasano yesterday. Overall, I'd say it was good appointment. I gave them a run-down of my history (which is basically a summary of this post and this post). It took a while to go through all that with the nurse - about 20-30 minutes or so, and then I actually met with Dr. Fasano for all of like 5 minutes! Keep in mind that we waited for like an hour before we even saw the nurse! Crazy, huh? I was there from a bit before noon until nearly 2!!

Anyway! What it boils down to is that they took my blood to run the Celiac gene test on me. The results will be back in 10-14 days. If it comes back negative, I only have a 5% chance of having Celiac. If it comes back as positive, it means that I carry the gene for Celiac, but that doesn't necessarily mean that I actually have Celiac. If it is positive, I would then have to decide if I want to do a gluten challenge - which basically means that I'd have to go back on gluten continually for a month or so. I was told it would not have to be much (in their opinion!) - I was told 1 slice of bread, 1 cookie or even a couple crackers would be enough. Then, after a month, I would come back in for a biopsy or antibody blood test and see where to go from there.

It's sort of a Catch-22 for me. I mean, I want the gene test to come back positive because I really believe that I, and some of my family members, have Celiac. But, I don't want it to be positive because I am scared to death of having to go back on gluten. I know I'll be so run-down, need lots of naps, be irritable, have lots of headaches, etc. I know the doctors think 1 slice of bread, 1 cookie or a couple crackers isn't much, but we all know differently, don't we?

So, we'll see. I'll update you guys when I hear back about the test. For now, I'm sitting on pins and needles!



Sally Parrott Ashbrook said...

You know, there are a ton of us who have gluten intolerance but who don't test positive for it in the traditional sense. My gastroenterologist down here says, "If it looks like a duck and quacks like a duck and walks like a duck, it's a duck." In other words, if you know you feel much better avoiding gluten, there's no reason to eat gluten to prove a point---you've already proven it to yourself! Dr. F. has done some great work, but I don't think he goes far enough in recognizing those of us who ARE absolutely gluten-intolerant even if our villi don't show it. (For what it's worth, I also tested positive for atypical gluten intolerance in the genetic testing at, but not for the traditional kind---and gluten makes me WAY sick.)


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