Re: Doctor recommendation and a few questions...

[Guest guest]

I too am looking for a really good GP who knows about GI stuff. I live in South/West San , bordering Willow Glen.Thanks!JemmaOn Sat, Sep 5, 2009 at 11:29 PM, jazzerita <jazzerita@...> wrote:

 

I just recently joined the group and have been very happy to have so much helpful information about local establishments, etc!

I cut gluten out of my diet about 6 years ago when I made a connection between eating gluten, getting a gross taste in my mouth, feeling crummy and eventually figuring out it was affecting my fertility.

Since I eliminated gluten on my own, without working with a doctor, I have never had an official diagnosis. Due to the fact I get so sick if I do eat gluten, I don't think I could eat the gluten required to get an official diagnosis.

Even though I am not eating gluten (I've been slacking a bit lately and not asking as much about shared fryers, etc, and have been paying the price) I'd like to find a doctor who has a lot of experience with gluten intolerance/celiac disease because I would liek to have a professional to work with and to bounce questions off of.

Also, I have a 4 year old daughter who is gluten free because when we introduced gluten she started having urinary and fecal incontinence and vomiting. Her pediatrician agreed with us that we needed to stop giving the gluten and to rely on the in vivo results rather than continuing the gluten for a lab verification that she wasn't tolerating it. This was about a year ago and I'd also like to talk to a doctor who specializes in celiac disease in order to find out where we should go with my daughter.

I've been trying to kind of pretend all is well and not face the fact that there may be more we could be doing to be sure we're on the right track with our diet, etc.

We live in Redwood City but can travel throughout the Bay Area if someone feels a doctor is worth it.

Thanks!

[Guest guest]

Ditto what Pam says...no one is going to like everyone. I just know that my 18-year old celiac daughter likes Dr. Aron very, very much. His interest is genuine. He responds quickly to questions called in. He is deeply involved in research, and is very invested in my daughter's reaction to the drugs he prescribes (which seem to be working, albeit very slowly). He's realistic, and it is not unreasonble for him to expect commitment from patients. This is most likely why he's been so easy to work with from our perspective. My daughter adheres to a strict GF diet. She has never knowingly ingested gluten after being diagnosed; she just gets too sick.

I wish everyone good luck with whomever they choose. Celiac Disease has been a debilitating, frustrating experience for our entire family, and everyone deserves to find the right physician.Melis B----- "Pam Newbury" <pknewbury@...> wrote: >

> > >

> I have been talking to people about their experiences with GI doctors who treat celiac disease for over 16 years now and I have never, ever found a doctor that is liked by everyone. As soon as I find a doctor that several people seem to like, I then hear from others who have had absolutely horrific experiences with that doctor! I now despair ever finding a doctor I can wholeheartedly recommend at all.

Every time I am asked for a doctor recommendation I just cringe and grit my teeth. The best I can ever do is send people to a doctor with the warning that they had better be well educated beforehand and ready to advocate for what they want. Thank goodness for the internet.

One thing I have noticed about Dr. Aron is that many of the complaints have to do with his staff (I have heard of the wrong chart/wrong appointment time complaint from several people).

Pam

>

[Guest guest]

I was diagnosed several months ago and went online and found that Stanford has a Celiac clinic and the specialist listed is Dr. Gray.  I made an appointment with him.  The paperwork he sent for me to fill out looks promising and I am looking forward to my appointment.  Any thoughts on Dr. Gray?

-

On Mon, Sep 7, 2009 at 7:42 PM, <melbatavia@...> wrote:

 

Ditto what Pam says...no one is going to like everyone. I just know that my 18-year old celiac daughter likes Dr. Aron very, very much. His interest is genuine. He responds quickly to questions called in.  He is deeply involved in research, and is very invested in my daughter's reaction to the drugs he prescribes (which seem to be working, albeit very slowly). He's realistic, and it is not unreasonble for him to expect commitment from patients. This is most likely why he's been so easy to work with from our perspective. My daughter adheres to a strict GF diet. She has never knowingly ingested gluten after being diagnosed; she just gets too sick.

I wish everyone good luck with whomever they choose. Celiac Disease has been a debilitating, frustrating experience for our entire family, and everyone deserves to find the right physician.Melis B ----- " Pam Newbury " <pknewbury@...> wrote: >  

> > >

> I have been talking to people about their experiences with GI doctors who treat celiac disease for over 16 years now and I have never, ever found a doctor that is liked by everyone.  As soon as I find a doctor that several people seem to like, I then hear from others who have had absolutely horrific experiences with that doctor!  I now despair ever finding a doctor I can wholeheartedly recommend at all. 

 

Every time I am asked for a doctor recommendation I just cringe and grit my teeth.  The best I can ever do is send people to a doctor with the warning that they had better be well educated beforehand and ready to advocate for what they want.  Thank goodness for the internet.

 

One thing I have noticed about Dr. Aron is that many of the complaints have to do with his staff (I have heard of the wrong chart/wrong appointment time complaint from several people). 

 

Pam

 

>

[Guest guest]

We have had good, if short, experiences with him. His nurse practitioner, Pat

Frost, is particularly helpful and great about following up.

--lp

palmer@...

________________________________________

From: [ ] On Behalf Of

Melia [rmelia@...]

Sent: Monday, September 14, 2009 9:43 AM

Subject: Re: [ ] Doctor recommendation and a few questions...

I was diagnosed several months ago and went online and found that Stanford has a

Celiac clinic and the specialist listed is Dr. Gray. I made an appointment

with him. The paperwork he sent for me to fill out looks promising and I am

looking forward to my appointment. Any thoughts on Dr. Gray?

-

On Mon, Sep 7, 2009 at 7:42 PM,

<melbatavia@...<mailto:melbatavia@...>> wrote:

Ditto what Pam says...no one is going to like everyone. I just know that my

18-year old celiac daughter likes Dr. Aron very, very much. His interest is

genuine. He responds quickly to questions called in. He is deeply involved in

research, and is very invested in my daughter's reaction to the drugs he

prescribes (which seem to be working, albeit very slowly). He's realistic, and

it is not unreasonble for him to expect commitment from patients. This is most

likely why he's been so easy to work with from our perspective. My daughter

adheres to a strict GF diet. She has never knowingly ingested gluten after being

diagnosed; she just gets too sick.

I wish everyone good luck with whomever they choose. Celiac Disease has been a

debilitating, frustrating experience for our entire family, and everyone

deserves to find the right physician.

Melis B

----- " Pam Newbury " <pknewbury@...<mailto:pknewbury@...>>

wrote:

>

>

>

>

>

I have been talking to people about their experiences with GI doctors who treat

celiac disease for over 16 years now and I have never, ever found a doctor that

is liked by everyone. As soon as I find a doctor that several people seem to

like, I then hear from others who have had absolutely horrific experiences with

that doctor! I now despair ever finding a doctor I can wholeheartedly recommend

at all.

Every time I am asked for a doctor recommendation I just cringe and grit my

teeth. The best I can ever do is send people to a doctor with the warning that

they had better be well educated beforehand and ready to advocate for what they

want. Thank goodness for the internet.

One thing I have noticed about Dr. Aron is that many of the complaints have to

do with his staff (I have heard of the wrong chart/wrong appointment time

complaint from several people).

Pam

>