Looking For A Doc In San Jose, Ca

[tom]

Anybody have any recommendations for Dr. in San Jose ?

[lisabarella]

Yes, Yes, Yes. Go see Dr. Gary Gray at Stanford. He is amazing and one of the best in the country. Very personable and willing to tackle anything.

Lisa

[dkmb]

I agree that Standford is the place to go. If you are asking about a child, Lucile Packard Children's Hospital at Stanford has a wonderful team of doctors.

There is another post on here under doctors that recommends Jeffrey Aron in San Francisco. He was on Ronn Owens show on KGO 810 radio last week. He was answering call in questions. He mentioned Celiac twice, once in answer to a problem with milk and bread. Then in answer to the question "Is there a cure for ADD". While he didn't say it is a cure he did say if you have a child with ADD get them checked for celiac disease.

Good luck!

DK

[tom]

Thank you both for your replies.

I suppose i was hoping for a south bay doc, but if Dr. Gray is that good, I guess I'll be heading up the peninsula to stanford.

[lisabarella]

Here is Dr. Gray's contact info at Stanford.

Dr. Gary M. Gray

Professor of Medicine, Emeritus; Gastroenterology

Stanford University School of Medicine

Appointments: 650-723-6961

Nurse: 650-724-2406

Internal Medicine/Medical Specialities Clinic

900 Blake Wilbur Drive

Room W2002

Palo Alto, CA 94304

[tom]

Well, i finally saw Dr Gray yesterday and can barely even believe how disappointed i am.

It's as if he has nearly NO IDEA of what the cumulative effect of the celiac set of symptoms does to a person.

I was diagnosed as an infant (in the 60s) yet he recommended I eat a half-slice of bread every day for a month so he can do the blood test. I would actually choose 30 days in jail w/ a light daily whipping, over eating bread every day. Although i didn't start 100% complete gluten-free until 11 mos ago, i haven't had regular bread in yrs.

I made it very clear (so i thought) that i was NOT going to poison myself further. Then about 15 min later he asked me AGAIN to eat bread for a month.

As i tried to tell my history, he interrupted me 2-3x, so i never got to mention or find out more about the 'celiac fog', cerebellar ataxia, stiff-man syndrome, how annatto and casein/lactose fit in, "weakened" dental enamel (i think it's the root cause of some broken teeth).

While talking about appetite he actually, for some unknown reason, mentioned fettucine alfredo. Now, this is after he knew that i started also going dairy-free about 7 wks ago and saw remarkable improvement. Aghast, i say that that dish is primarily wheat and cream, and he responds that he's heard the rice pastas are good. Disregarding that i am NOT going to have alfredo sauce no matter how good rice pasta can be, I asked if his comment means he's never tried a rice pasta. He hasn't. It seems strange to me to think that during all the yrs he's been involved w/ celiac disease and celiac patients, he's really NEVER had an opportunity to sample the food we have to eat ? Or were there opportunities and he had just no interest in trying it ?

I can't think of a single moment of the visit where he did anything beyond what a basic uninformed (celiac-wise) GP would do.

I've had every symptom on the lists except DH, and was already diagnosed as celiac, and have a 9 yr old niece diagnosed a few months ago, and he has the audacity to tell me i'm 50/50 for having the disease.

My blood boils just thinking about that statement.

I have no reason to believe he's actually seen a patient deep in the 'celiac fog' or w/ cerebellar ataxia. Or perhaps he just ignored it, as i feel he did w/ me. There's a LOT more to it than diarrhea. Compared to 5 or 6 of the worst symptoms, the diarrhea is nothing more than an inconvenience.

To give the benefit of doubt, perhaps he's never seen anyone in the dungeon of the combined symptoms because it makes a person non-functional. Not just dysfunctional, as that has a connotation of still functioning, albeit poorly. I was simply unable to do even something as simple as making an appt and showing up. Most often, I couldn't even get out to get the mail until 6, 8, maybe 10 hrs after waking. The 2 tons of nausea by itself made it risky to walk 1/2 a block and more than once i've puked in the street gutter.

The mental effects left me feeling unable to think right, or even hold a conversation.

So perhaps he really hasn't seen anyone as bad off as it can get, since the condition itself greatly impedes the process of getting help.

Regardless, i was expecting SO much more from him, it just completely took the wind from my sails.

He even told me that the angina i used to have pre-gluten-free was heartburn. As if i didn't know m*****bleeping heartburn when i feel it.

Can anyone recommend a different doctor in the SF bay area ?

[YoloGx]

  tom said:

Anybody have any recommendations for Dr. in San Jose ?

Hey Tom,

You know I don't know of anyone personally although I met someone at the YMCA in San Jose whose therapist is working with her concerning celiac. Perhaps the therapist knows someone? I have had difficulties finding anyone versed in this. I got some good clues by a naturopath/chiropractor in Brisbane. However he's really not much into diet, strange to say. Very good at diagnostics however with all kinds of leading edge equipment to help him. He's the one that figured out I was low in B-1. However he gave me detox supplements that turned out had hidden gluten. At the time all I knew was I couldn't handle taking them even though they were just cilantro based.

Mostly I think we have to be our own doctors until the establishment changes. There are however a couple of docs at Stanford researching celiac I'd like to talk to. You might get something useful talking with them.

I will be giving a talk on herbal etc. remedies in April in Santa Cruz. I was thinking it would be great to have a celiac support group here on this side of the hill. Apparently the one in Santa Cruz first started here.

In any case just thought it might be fun to get together and compare notes. I live in Los Gatos, not far away, and work in San Jose. I know at least one other person in SJ who has celiac who would be up for a support group.

Let me know if you are interested.

Yolo (Bea)

[ellen123]

Hi Tom,

My neice lives in San Jose, right next to Campbell, and she's been working with a naturopath and a more traditional doctor -- I think an endocrinologist -- very successfully. She's allergic to gluten, eggs, dairy, and probably other foods as well. I'll call her tomorrow (she's away today), find out their names for you, and will post again when I get ahold of her. My neice doesn't suffer fools gladly so I can't imagine she'd see anyone as foolish and disinterested as the Stanford guy was.

Ellen

[ellen123]

  tom said:

Anybody have any recommendations for Dr. in San Jose ?

Tom-

I wasn't able to reach my neice by phone, but she did email me this response. The doctor she works with primarily is a naturopath named Connie Hernandez, at Pacific Naturopathic. Unfortunately, she's a little farther north - in Palo Alto. But I do know my neice has been happy with her. The website is Open Original Shared Link.

She didn't mention the other doctor I thought she was seeing. She did however mention a group that she has not yet seen, which was recommended to her by a couple of different people. That group is at Open Original Shared Link

Hope you find a doctor who can help.

Ellen

[Lisa]

Although every ones reply is helpful , the original post is four years old and perhaps no longer relevant.

That's one of the odd things about a message board, our queries can live forever.

[ellen123]

  Momma Goose said:

Although every ones reply is helpful , the original post is four years old and perhaps no longer relevant.

That's one of the odd things about a message board, our queries can live forever.

That's funny, Momma Goose! Thanks for pointing that out! I didn't even pay attention to the date of the first post, only the most recent one from Yolo. Tom may be a doctor himself by now!

[Maulbeere]

Thanks for the info Ellen :-) Yolo, I would be interested in any contact details you can come up with also.

One of the best things about message boards: a conversation can be owned by everyone and a discussion can span four years :-D