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megsybeth

Last Minute Tips?

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My four-year-old son is going in for an endoscopy/biopsy tomorrow, performed by a skeptical GI. I've posted before about his blood work and some say he hasn't had enough testing and I know, even with the best tests there is a small false negative rate on the blood work. I already spoke to her about where she'll do biopsies and she said she'd be doing them on the duodenum. I really wanted to have a celiac specialist do the testing but it would have delayed things so long (months more of diarrhea and feeling like I'm poisoning my baby). But I have an appointment with the specialist at the end of the month. Based on my recent celiac diagnosis and the strong symptoms and an imediate positive response to the gluten-free diet in my son.

So I want to make sure we get as much useful information to the right people as possible. I've realized that flakey doctors and their staff can do so much damage to recovery when they tell you labs "are fine" only to tell you months later that it turns out those labs actually weren't done...Can I ask the hospital to give me images, a celiac disease? Something with the biopsy information so that I can be sure the new doctor gets it. I'd like to have as much as possible actually in my own hand and I'm happy to pay for it if needed.

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You can request them from your son's endoscopy. But be aware that most damage is unseen by the eye, so even if you possibly got images, there is a probabliity that you wouldn't see anything on it.

Also, get a copy of the pathology report (i believe that is what its called correct me if i'm wrong) for the biopsys. I can't remember if the GI actually looks at it or if the pathology department does.

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You can and should request written or electronic copies of ALL medical testing. My endoscopic reports include a written description of what was seen by the GI, along with some pictures of abnormalities and written pathology of biopsies - not sure all reports are the same - but all should include pathology report.

Here is a good article to read and/or bring with you to your appointment:

http://www.charlotte-celiac-connection.org/files/Celiac_Disease_How_many_biopsies_for_diagnosis.pdf

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