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A big thank you to everyone who responded to my query about sticking with our current GP or looking for someone who has half a clue about celiac.

Just about everyone who responded is in the same boat: we're on our own in the medical world unless we find true specialists (like medical people associated with research hospitals and the like) or, more randomly, a doctor with personal experience with celiac. There were many deep sighs (so to speak) and 'oh yeah, I know what you are talking about' emails. So many of you are still searching for an open medical ear.

What I heard from you all was that we essentially have to educate ourselves as we learn the lifestyle. Everyone had their own favourite resources but this listserve and local support groups came out tops. R.O.C.K. was also recommended as our daughter is young and will probably appreciate the social support of other young celiac sufferers. 

Regarding the decision about our GP: should I stay or should I go? ... most advice was to first determine if she is interested in learning what she needs to about celiac in order to be a good doctor for our daughter; if so, stay with her. If she is not, move on, using recommendations from others in the area with celiac. Some people said finding a pediatrician wouldn't guarantee they would know any more about celiac than our GP - one person said their GI didn't even know much about it (help!). But we still need general medical attention and it may be that our current GP is as good as any, overall. Others thought a pediatrician's training in children's health could be more helpful than a GP's in terms of attentiveness to her needs and possibly spotting problems.

One respondent, a physician's assistant, recommended asking our GP point blank if she is comfortable dealing with what is entailed in treating/working with celiac disease. I think I will start here with our GP. It is clear from many of your emails, and indeed many of the general postings, that celiac often brings other health issuse with it. I am still learning about these, but Type I diabetes is apparently one of them, and also effects of a GF diet (low fibre and possible nutrient deficiencies). That's not quite inside the 'just take her off gluten and have a nice day' response!

Some of you pointed out that doctors are fallible too and not perfect, or perfectly educated in all diseases and conditions. Point taken. 

Also, as per your advice, I am going to keep updated medical files at home here, asking for copies of what the Dr. has. I think I am just going to have to get over my 'I don't want to be thought of as a neurotic parent' and just do my best for our daughter. 

Thank you all for your replies and suggestions for possible places to start or investigate. I am listing those below for anyone else who is interested. It is good to know we are not alone, but also sad to know we have so much company. Thank goodness we all have this site and support groups to connect with!

Thanks again,
Jo

Recommended website resources:

http://www.glutenfreedietitian.com
www.celiaccentral.org
http://www.glutenfreemom.com/ and http://glutenfreemommy.com/ (for recipes)
www.gluten.net
www.csaceliacs.org
www.eatright.org 














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