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Emmah Saw Her Dr This Week

vampella

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vampella Contributor
vampella
Posted

So Emmah went in for her regular height and weight this week and she's doing great. She's been gluten free for 10 months now and hasn't been sick a day since(aside from my screw ups) She's back on the growth charts, following her own curve and is between the 10th & 25th %. She's almost 4.5 now and she's 30 lbs and 38 inchs tall...yay Emmah

Anyway my reason for posting aside from being so happy that emmah's better is that her Dr was telling us we should think about one day going back on gluten and re-doing the TTG. He said he referred a boy to gastro with a neg TTG and they said there was NO way he could have celiac with a neg TTG, like they did Emmah. Well the mom wanted to know what was going on so she put him on a very high gluten diet and waited 3 months and re did the TTG it's now abnormal and he's going back to gastro (for me it's a big I told ya so to the Dr because I told her test can be wrong and she argued with me) I know we've all heard these stories before but I though this might help someone new to the board that is having a similar problem.

Oh and another in your face for the gastro who told me Emmah doesn't have celiac she most likely has a wheat allergy....Emmah was clear for wheat, rye, oat, barley, cats, dog, rabbit and everything else under the sun. Also that doctor(allergist) totally agreed that the TTG was inaccurate...I've had a lot of in your face Ms.Gastro lately....too bad I can't tell her that!

Anyway, I hope all your munchkins are happy and healthy :)

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Nic Collaborator
Nic
Posted

For us the testing inaccuracy went the other way. My son's TTG was very high and the doctor was sure the biopsy would confirm Celiac but when he biopsied he sent it to the regular lab that my insurance covers and they said it was negative for Celiac. Thank God my gastro didn't think this was possible and then had it sent to Columbia University in NYC (which my insurance did not cover). They said it was positive. He also had more blood sent out to Prometheus Labs in California just to confirm the positive blood through a specialty lab (insurance did not cover this either :angry: ) and they also confirmed the positive as well as he carries the DQ2 gene for Celiac. My point is that the testing is so unreliable and since the insurance companies are calling the shots on which labs we can use we are not always getting the most experienced people running our tests as opposed to the people at Prometheus who are running these particular tests all the time or Columbia that houses Dr. Green and his Celiac specailists. I wouldn't worry about the test results if your daughter is better off of gluten and that can be the "in your face" for your gastro right there. Maybe write a letter.

Nicole

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