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Hi,

We've just had our 2.5 year old given the official diagnosis of celiac after 
picking up on her symptoms late last August. Over these months it has felt 
like we've done most of the work - the internet research, attending a celiac 
conference, asking friends' and friends of friends' advice, collecting books 
and personal stories, reading this listserve etc etc.

Our GP is someone we have appreciated personally and professionally, so both 
my husband and I have been disappointed to find that she doesn't seem to be 
ready to deal with this new development in our lives with much interest. Her 
approach is to advise us to take our daughter off gluten... and that is it. 
(We saw a pediatric dietician and that was disappointing too ... sigh.)

I am tired of hoping that the person I am paying and asking advice from 
knows more than I do about celiac (and I don't know all that much either!). 
I am ready to find someone who will be proactive or at the very least ask 
some intelligent questions about our daughter's lifestyle, our family's food 
choices, educate us about medical conditions associated with celiac ... you 
know, someone who has interest/experience and a few clues.

What have others on this list done regarding their GP after being diagnosed? 
Should we try to find a new GP for our daughter? for our family? I can take 
our daughter to her GI twice a year but is that broad enough? How do we get 
our daughter's medical files kept updated and on-the-ball, as it were, so 
that we don't have to educate every medical person who sees her, or without 
telling the dr. what to write?

I have preferred going to a GP over a pediatrician because it seems a GP 
would see the child in the context of her/his family and be familiar with 
the child's context. Now it seems we're being left to do this work on our 
own, plus being burdened with a GP who doesn't really want to know. It's 
awkward, to say the least.

Any advice?

Jo 

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