Questions For Son's Doctor

[redheadheather]

I am meeting w/my son's doctor (or, group of doctors since it's an HMO - he's not really assigned just one doctor). I am just wondering if you guys could provide some questions for me to ask them. I'm going to talk to them about their testing (why they only did two tests (IGG/IGA) and not the full "celiac panel" - if/when they will be re-testing for levels... what else they should test for (someone suggested iron levels) etc. They are not very helpful/accomodating at this point so any questions I can give them up front today will definately help (they treat me like they are patting me on the head like I'm a child - UGH)

anyway - I know this is kind of a hard question to answer - there are so many questions I could ask - but I can't think of alot so any help would be appreciated.

THANKS!!

[skoki-mom]

I asked my GI about re-testing antibody levels. He didn't think there was much point, as antibody levels are not a good indicator of the extent of the disease. He said unless the go way up, they really don't tell you much. Like, if my antibody count dropped by half, for instance, it would not mean I had experienced 50% healing. I am probably getting scoped again in Feb or so just to see what's going on.

Sorry I can't be more helpful, but that is what I know at this point about following bloodwork.

[Jnkmnky]

they are patting me on the head like I'm a child - UGH)

Heather- That makes me sick. Hopefully, it makes you mad. You won't get any help from any dr who knows nothing about celiac disease then compounds his lack of knowledge with arrogance. I don't know what to suggest except blood work to look for difficencies * I can't spell that*. My son was low in all minerals they checked for, all vitamins, and iron. Across the board - low. They suggested I triple his iron pills (which I did NOT because it seemed that would cause additional problems). He ate meat with every meal for a couple of weeks along with ONE iron pill. He was fine, in my opinion, a few weeks later. Maybe you could print out a bunch of basic info about celiac disease and bring it with you to the appt. Even put it in a nice folder to show you've bothered to take the time when they haven't. When they say something with an air of absolute knowledge and you know they're wrong, you can whip out your information and it will be more than your word against their's.