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Anyone Go To Chop?

M0Mto3

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M0Mto3 Rookie
M0Mto3
Posted

My daughter's current GI doc has her diagnosed "gluten sensitive". I know at this point that I will never put her back on gluten to get an official Celiac diagnosis. Her history is pretty long, but she definately can not handle gluten and was failure to thrive because of it. She is now happily off gluten after a 2 month gluten trial in which she did awful, but her bloodwork came back negative. She is currently 16 months old.

So, I am thinking about asking her ped for a referral to CHOP's Celiac Center. But, I will not put her on gluten, so I don't know if it is even worth it. Was anyone diagnosed there without positive bloodwork, but an extensive history that supports Celiac's?

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StephanieL Enthusiast
StephanieL
Posted

Maybe call and talk to them? I agree that if you have no intention on putting her back on for testing it may be a bust.

We are toying with the idea of taking DS to Baltimore because of wonkey blood work. Still undecided here too. He's been gluten-free for over a year after an inconclusive biopsy (but was totally asymptomatic) so...

M0Mto3 Rookie
M0Mto3
Posted
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I was thinking the same thing. There is no point in fighting with the insurance company to get them to pay for something out of network and making a 3 hour drive if all they are going to say is that they need her to go back on gluten in order to diagnose her. I will not be doing that anytime soon.

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