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haley

Member Since 22 Jul 2013
Offline Last Active Jul 22 2013 12:36 PM
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#880541 Do Doctors Normally Do "maintenance" After A celiac disease Diagnosis?

Posted by haley on 22 July 2013 - 11:04 AM

Who was the Doctor you saw in Houston? I am looking for one who is knowledgable about Celiac but am having trouble coming up with anyone. Thanks!

Not sure if this helps or not, but I finally had my appointment with "THE" guru celiac doctor here in Houston last week. He spent 2 hours with my mom and I discussing the testing he would do, what tests need to be done, what sort of follow up plan needed to happen, the seriousness of Celiac, etc...

Basically for post-diagnosis, he told me I need to check in every 3 months to monitor vitamin deficiencies as he doesn't want me toxic from taking the higher amounts. Since it's an autoimmune disease, he wants to check my overall health status (how I'm feeling, any new symptoms, celiac blood work to check for CC, etc...) about every 6 months. He ordered a bone density scan, endoscopy, colonoscopy, CT of gut, blood testing through Prometheus. He also mentioned that the endoscopy needs to be done a few times throughout the recovery process to monitor the healing and to check for CC.

So, it seems to me that follow up is pretty essential even if the gluten-free diet has eliminated most of our symptoms. He was also pretty intrigued that my mother had a ton of secondary Celiac problems (never diagnosed), but zero gastro issues (thyroid disease, liver disease, osteopenia, etc...). So, he demanded she get tested too. It was such a thorough appointment, which most of us never experience, so I wanted to share what the best doctor in Houston would suggest. wink.gif Good luck!


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