Re: Docs and medical records

[Guest guest]

Yes, I had similar experiences with doctors outside of California. One of the hardest parts of getting a diagnosis and good care is the existence of the medical record! Once one doctor writes something disparaging and nasty in your record, good luck getting objective and concerned care again. I just had to take matters into my own hands. Now, thankfully, I think I have outrun my medical record. I just tell them what I want them to know and do not ever want my old record from the bad years of diagnosis (or lack thereof) to resurface. Also, now that I know what is wrong with me and how to deal with it, I don't really need to see doctors!

I wonder what percentage of Celiacs have had similar horrible experiences with doctors and what kind of effect this has had on their health and their lives, not to mention their future trust of doctors? This could be an interesting study to do. I bet the level of patient trust toward doctors within the Celiac community is shockingly low.

What do you think?

From: Kathleen Van Velsor <benicia236@...> Sent: Wednesday, November 19, 2008 9:06:50 AMSubject: [ ] Yoga

I can't resist joining in and yes please exercise care when printing or distributing.

I won't mention names but my primary physician laughed when he heard about my symptoms and made fun of me when I said I could barely function at work, then snidely suggested that I take anti-depressants. He is at Kaiser, Walnut Creek.

I then switched primary care doctors at Walnut Creek only to find one who reviewed the first doctor's recommendation and suggested that I continue the regime (which I never started). When I showed him my rashes, he took 3 seconds to review and suggested that I avoid poison oak in the future.

After taking 2 years to get a referral to a GI specialist at Walnut Creek I saw someone who was nice but utterly uninformed about CD and other diseases. He recommended that I take a string of very powerful GERD medications which made me very sick. I was blood tested for CD at that time at my suggestion. It was negative (I now know this is common).

His final recommendation after months of trial and error? Take a yoga class!

Kathleen Kathleen Van Velsor

[Guest guest]

I certainly have had this kind of problem. I quit Kaiser because no matter who I saw they thought I was a nut case since I had so many allergies, was sensitive to nsaids and told the docs what I thought was wrong...plus none of them investigated the celiac I told them I thought I had...BeaFrom: <kristin_boston@...>Subject: Re: [ ] Docs and medical records Date: Wednesday, November 19, 2008, 10:27 AM

Yes, I had similar experiences with doctors outside of California. One of the hardest parts of getting a diagnosis and good care is the existence of the medical record! Once one doctor writes something disparaging and nasty in your record, good luck getting objective and concerned care again. I just had to take matters into my own hands. Now, thankfully, I think I have outrun my medical record. I just tell them what I want them to know and do not ever want my old record from the bad years of diagnosis (or lack thereof) to resurface. Also, now that I know what is wrong with me and how to deal with it, I don't really need to see doctors!

I wonder what percentage of Celiacs have had similar horrible experiences with doctors and what kind of effect this has had on their health and their lives, not to mention their future trust of doctors? This could be an interesting study to do. I bet the level of patient trust toward doctors within the Celiac community is shockingly low.

What do you think?

From: Kathleen Van Velsor <benicia236 (DOT) com> Sent: Wednesday, November 19, 2008 9:06:50 AMSubject: [ ] Yoga

I can't resist joining in and yes please exercise care when printing or distributing.

I won't mention names but my primary physician laughed when he heard about my symptoms and made fun of me when I said I could barely function at work, then snidely suggested that I take anti-depressants. He is at Kaiser, Walnut Creek.

I then switched primary care doctors at Walnut Creek only to find one who reviewed the first doctor's recommendation and suggested that I continue the regime (which I never started). When I showed him my rashes, he took 3 seconds to review and suggested that I avoid poison oak in the future.

After taking 2 years to get a referral to a GI specialist at Walnut Creek I saw someone who was nice but utterly uninformed about CD and other diseases. He recommended that I take a string of very powerful GERD medications which made me very sick. I was blood tested for CD at that time at my suggestion. It was negative (I now know this is common).

His final recommendation after months of trial and error? Take a yoga class!

Kathleen Kathleen Van Velsor

[Guest guest]

I have been overseen properly by my gastro who gave me a quick diagnosis, now I need someone to oversee my case, any ideas who to see, so far so good!On Nov 20, 2008, at 10:03 AM, Beatrice Garth wrote:I certainly have had this kind of problem. I quit Kaiser because no matter who I saw they thought I was a nut case since I had so many allergies, was sensitive to nsaids and told the docs what I thought was wrong...plus none of them investigated the celiac I told them I thought I had...BeaFrom: <kristin_boston >Subject: Re: [ ] Docs and medical records Date: Wednesday, November 19, 2008, 10:27 AMYes, I had similar experiences with doctors outside of California. One of the hardest parts of getting a diagnosis and good care is the existence of the medical record! Once one doctor writes something disparaging and nasty in your record, good luck getting objective and concerned care again. I just had to take matters into my own hands. Now, thankfully, I think I have outrun my medical record. I just tell them what I want them to know and do not ever want my old record from the bad years of diagnosis (or lack thereof) to resurface. Also, now that I know what is wrong with me and how to deal with it, I don't really need to see doctors! I wonder what percentage of Celiacs have had similar horrible experiences with doctors and what kind of effect this has had on their health and their lives, not to mention their future trust of doctors? This could be an interesting study to do. I bet the level of patient trust toward doctors within the Celiac community is shockingly low. What do you think? From: Kathleen Van Velsor <benicia236 (DOT) com> Sent: Wednesday, November 19, 2008 9:06:50 AMSubject: [ ] YogaI can't resist joining in and yes please exercise care when printing or distributing. I won't mention names but my primary physician laughed when he heard about my symptoms and made fun of me when I said I could barely function at work, then snidely suggested that I take anti-depressants. He is at Kaiser, Walnut Creek. I then switched primary care doctors at Walnut Creek only to find one who reviewed the first doctor's recommendation and suggested that I continue the regime (which I never started). When I showed him my rashes, he took 3 seconds to review and suggested that I avoid poison oak in the future. After taking 2 years to get a referral to a GI specialist at Walnut Creek I saw someone who was nice but utterly uninformed about CD and other diseases. He recommended that I take a string of very powerful GERD medications which made me very sick. I was blood tested for CD at that time at my suggestion. It was negative (I now know this is common). His final recommendation after months of trial and error? Take a yoga class! Kathleen Kathleen Van Velsor

[Guest guest]

Kaiser doctors can and do act aggressively in one's behalf, in terms of CD. A GI doctor at SF Kaiser diagnosed CD for me even though I had no GI symptoms and even though my CD blood test was negative. He insisted on a biopsy, and a repeat biopsy, because he saw nutritional deficiencies in my routine blood tests. Those biopsies confirmed CD.

So, Kaiser definitely has doctors who are aware and helpful. I also was very promptly diagnosed with a very rare autoimmune disorder that is rarely quickly identified. I'm very grateful to the doctors at Kaiser who have done such good things for me.

H.

In a message dated 11/20/08 10:04:02 AM, beagarth@... writes:

I certainly have had this kind of problem. I quit Kaiser because no matter who I saw they thought I was a nut case since I had so many allergies, was sensitive to nsaids and told the docs what I thought was wrong...plus none of them investigated the celiac I told them I thought I had...

Bea

**************One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com today!(http://pr.atwola.com/promoclk/100000075x1212962939x1200825291/aol?redir=http://www.aol.com/?optin=new-dp%26icid=aolcom40vanity%26ncid=emlcntaolcom00000001)

[Guest guest]

I guess it just goes to show we all have different experiences. I am glad you got such good treatment from someone at Kaiser. It certainly went down differently for me. I wish my experience had been more like yours... I am hoping in time more will be accepted about this condition by the medical establishment in general rather than the now current idea that celiac is just a "fad" and "catchall". When I saw them they hadn't even gotten that far since it was a few years ago before it became as "known" as it is now... In any case I was responding to another comment here who had similar experiences to mine, who try as he or she might, got pegged as a nut case even when they switched doctors due to comments made in their medical records -- when really the problem was that the doctors they saw just didn't have a clue when it came to celiac.I

actually met a doctor who used to work for Kaiser who's mysterious and increasingly alarming ailments turned out to be caused by celiac. Even for her it took 11 years to get the correct diagnosis, and it wasn't due to help she got at Kaiser...BeaFrom: flatcat9@... <flatcat9@...>Subject: Re: [ ] Docs and medical records Date: Thursday, November 20, 2008, 3:09 PM

Kaiser doctors can and do act aggressively in one's behalf, in terms of CD. A GI doctor at SF Kaiser diagnosed CD for me even though I had no GI symptoms and even though my CD blood test was negative. He insisted on a biopsy, and a repeat biopsy, because he saw nutritional deficiencies in my routine blood tests. Those biopsies confirmed CD.

So, Kaiser definitely has doctors who are aware and helpful. I also was very promptly diagnosed with a very rare autoimmune disorder that is rarely quickly identified. I'm very grateful to the doctors at Kaiser who have done such good things for me.

H.

In a message dated 11/20/08 10:04:02 AM, beagarth (DOT) com writes:

I certainly have had this kind of problem. I quit Kaiser because no matter who I saw they thought I was a nut case since I had so many allergies, was sensitive to nsaids and told the docs what I thought was wrong...plus none of them investigated the celiac I told them I thought I had...

Bea

************ **One site has it all. Your email accounts, your social networks, and the things you love. Try the new AOL.com today!(http: //pr.atwola. com/promoclk/ 100000075x121296 2939x1200825291/ aol?redir= http://www. aol.com/? optin=new- dp%26icid= aolcom40vanity% 26ncid=emlcntaol com00000001)