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    Do you have questions about celiac disease or the gluten-free diet?

lonewolf

Information For Doctors?

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Hi all,

I'm taking all 4 of my kids to the pediatrician tomorrow with a request that they all be tested for Celiac. I'm already getting the feeling that the clinic thinks I'm a little crazy. I rarely take my kids in for anything, my 14 year old hasn't seen any doctor for 2-1/2 years, my 12 year old not for a year and the younger ones only once or twice in the past 2 years. The nurse who called me several times obviously knows absolutely NOTHING about celiac disease and can't figure out why I want them tested if they don't have serious problems with diarrhea. So, my question is...

Does anyone know of a brochure or simple 1-2 page write up about celiac disease that I could take with me to show the doctor? I have lots of information, but I don't want to go in with the WSJ article and have him think that I'm just a hypochondriac. I still haven't been tested, because when I called my doctor weeks and weeks ago, they said they couldn't get me in until the 22nd. Funny, when I've needed to be seen in the past (it's been at least 2 years since I've been myself) I've been able to get in within a couple of days. I wanted to get tested first and then be able to tell the pediatrician that I have celiac disease (or gluten intolerance or something they will believe) and I wanted my kids to be tested. There is no question that I have a problem with gluten, but I have no "offficial" diagnosis.

If my kids were younger, I'd just put them on a gluten-free diet, but you can't just do that to 12 and 14 year olds without good reason. They are agreeable about being tested, and say they will stick to gluten-free if they have to, but only IF they have to. Those of you with kids know that you can't make a 14 yo do something they don't want to do without a REALLY good reason.

Any suggestions? I know this is a late request, but the appointment time kind of snuck up on my with my hectic week last week.

Thanks,

Liz

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I have found this from the NIH (National Institutes of Health), which is a .gov rather than a .com to be a very concise, clear, and relatively inclusive description of celiac. The NIH is part of the U.S. Department of Health and Human Services. So if a doctor won't take that as a credible resource, I don't know what it would take.

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

I took this with me to my first doctor's appt and used a pink highlighter to highlight my symptoms and some key points I wanted the doctor to notice. Turns out my doctor was very open about testing me and I didn't need to drive any points home, even though she didn't know much about it. So I was very lucky.

Hope everything goes well.

Nancy

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