Guest guest Posted December 6, 2003 Report Share Posted December 6, 2003 Hello.... I don't know if my 1st post was received or not but my 2nd was just a test to see if it reached or not. Then i got the message that it will be posted upon approval. Will that take long? Are all the post posted upon approval. I sorta could use the info i was requesting as soon as possible because i will be going on a cruise tomorrow. Reggaegirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 I don’t have any good – well anything – to share with you. I, too, have Kaiser, and the doc I saw last SUCKED!!!! I went in specifically to ask for a biopsy of a skin rash I suspect is DH – she wouldn’t do it. (This is not my normal doc; BTW, I am seeing her next week & will send an update). Anyway, this doc I went to not only refused to do the biopsy (or even refer me to someone who would) because she didn’t think it looked like DH, she also told me I couldn’t possibly have celiac due to my symptoms. (Because I was not “wasting away” and did not have diarrhea). Then, after I told her I was GF, she still insisted on doing blood tests, which – surprise – came back negative. There is nothing on God’s Green Earth that would make me eat gluten again, not even for a DX. As for how long you need to be eating gluten, I seem to remember reading somewhere that eating a piece of wheat bread a day for a few weeks should be enough, but I think that might have been for a biopsy, not a blood test. Basically my experience with Kaiser is that if it will cost them any money, they won’t do it. I worked on a campaign a little over a decade ago that gave whistle-blower protection to nurses ratting on the docs in HMO’s that refuse needed services on the basis of not costing the company money. During that course of that campaign, no less than 10 people told me (unsolicited mind you) after hearing the words “HMO” come out of my mouth, various stories about Kaiser letter patients die or be disabled for life rather than refer them to a specialist or give them needed treatment because it was too expensive. I am gong to go in there next week armed with printouts of info & ready to kick & scream until they give me the damn test. I’ll let you know how that goes. (Also, if all goes well with my visit, I’ll ask the doc to refer someone in the areas you are looking for – I’m in SF). Good luck Cory, Lil From: [mailto: ] On Behalf Of Cory Sent: Monday, May 08, 2006 5:31 PM Subject: [ ] question? So I've been emailing my doctor, who hasn't been giving me good responses,so I'll ask you. I am trying to arrange to take the blood test (BLOOD TEST, I'm not getting a biopsy) for celiac, does anyone have any idea how long I need to be EATING GLUTEN again for this to be reliable??? I have been on a GF diet for the past two or so months. For anyone that lives in the SF bay area. Does anyone have a Kaiser doctor recommendation for someone who actually has a clue about celiac? San , Richmond, or Oakland (preference in that order). Thanks so much! This list has been so much help, I really appreciate you guys. Cory Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 Get a new doctor. Go see Dr. Gray at Stanford. I use to live in Mountain View, CA and he is my doctor. Just a great doctor and good person. I fly back from NC to CA just to see him. Good luck. --------------------------------------------------------- A. Barella Ph.D. Student in Exercise & Sport Psychology Graduate Research and Teaching Assistant Department of Exercise and Sport Science The University of North Carolina at Greensboro Room 250 HHP Building Greensboro, NC 27402 Email: lisabarella@... Phone/Cell (with VM): (336) 253-5539 Fax: (336) 545-4486 " You will find something more in woods than in books. Trees and stones will teach you that which you can never learn from the masters. " - St. Bernard >From: " Lillyth Denaghy Keogh-Quillan " <lillythdenaghykeogh@...> >Reply- >< > >Subject: RE: [ ] question? >Date: Mon, 8 May 2006 21:18:13 -0700 > >I don't have any good - well anything - to share with you. I, too, have >Kaiser, and the doc I saw last SUCKED!!!! > > > >I went in specifically to ask for a biopsy of a skin rash I suspect is DH - >she wouldn't do it. (This is not my normal doc; BTW, I am seeing her next >week & will send an update). Anyway, this doc I went to not only refused >to >do the biopsy (or even refer me to someone who would) because she didn't >think it looked like DH, she also told me I couldn't possibly have celiac >due to my symptoms. (Because I was not " wasting away " and did not have >diarrhea). Then, after I told her I was GF, she still insisted on doing >blood tests, which - surprise - came back negative. > > > >There is nothing on God's Green Earth that would make me eat gluten again, >not even for a DX. As for how long you need to be eating gluten, I seem to >remember reading somewhere that eating a piece of wheat bread a day for a >few weeks should be enough, but I think that might have been for a biopsy, >not a blood test. > > > >Basically my experience with Kaiser is that if it will cost them any money, >they won't do it. I worked on a campaign a little over a decade ago that >gave whistle-blower protection to nurses ratting on the docs in HMO's that >refuse needed services on the basis of not costing the company money. >During that course of that campaign, no less than 10 people told me >(unsolicited mind you) after hearing the words " HMO " come out of my mouth, >various stories about Kaiser letter patients die or be disabled for life >rather than refer them to a specialist or give them needed treatment >because >it was too expensive. > > > >I am gong to go in there next week armed with printouts of info & ready to >kick & scream until they give me the damn test. > > > >I'll let you know how that goes. (Also, if all goes well with my visit, >I'll ask the doc to refer someone in the areas you are looking for - I'm in >SF). > > > >Good luck Cory, > > > >Lil > > > > _____ > >From: [mailto: ] >On Behalf Of Cory >Sent: Monday, May 08, 2006 5:31 PM > >Subject: [ ] question? > > > >So I've been emailing my doctor, who hasn't been giving me good >responses,so I'll ask you. I am trying to arrange to take the blood >test (BLOOD TEST, I'm not getting a biopsy) for celiac, >does anyone have any idea how long I need to be EATING GLUTEN again for >this to be reliable??? I have been on a GF diet for the past two or so >months. > >For anyone that lives in the SF bay area. Does anyone have a Kaiser >doctor recommendation for someone who actually has a clue about >celiac? San , Richmond, or Oakland (preference in that order). > >Thanks so much! This list has been so much help, I really appreciate >you guys. > >Cory > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 I'm sorry you encountered these problems. Over a 15-year-period, I've had excellent care by Kaiser in San Francisco. My first doctor was lazy and ignorant; the rest I encountered have been exceptional. Although my health was extremely good when I joined Kaiser, I've had some extremely bad times, and some very exensive ones -- expensive for Kaiser, that is. I've never had to battle for a test or contend a bill. I've had many, many unusual diagnostic tests done, just to rule out unpleasant possibilities. I had a $10,000 helicopter evacuation, and my bill was $100. I've even had a doctor call me at home while he was on vacation in Florida, just to make sure I'd been properly diagnosed and treated and that I was as comfortable as possible. Lower level staff members are a mixed bag; some are splendid, others are foolish at best. Overall, I feel extremely fortunate to be a Kaiser member. The one regrettable exception is their pharmacy. It seems ineffecient and/or understaffed. Its tier pricing (I'm not sure of the right word for the formulary cost system) charges more for non-generic drugs, even if the generic doesn't work well for the patient. (For my daughter, that means paying $250 a month for a necessary prescription rather than $10 for the generic.) I hope you are able to find a doctor who works well for you. H. In a message dated 5/8/06 10:05:31 PM, lillythdenaghykeogh@... writes: Basically my experience with Kaiser is that if it will cost them any money, they won’t do it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2006 Report Share Posted May 10, 2006 I fell I should say that I have had great care for my son. I have been very impressed with my son’s doctor. Also, I have been impressed with every duty nurse I have spoken to. Just not so much with the adult docs. From: [mailto: ] On Behalf Of flatcat9@... Sent: Tuesday, May 09, 2006 7:44 AM Subject: Re: [ ] question? I'm sorry you encountered these problems. Over a 15-year-period, I've had excellent care by Kaiser in San Francisco. My first doctor was lazy and ignorant; the rest I encountered have been exceptional. Although my health was extremely good when I joined Kaiser, I've had some extremely bad times, and some very exensive ones -- expensive for Kaiser, that is. I've never had to battle for a test or contend a bill. I've had many, many unusual diagnostic tests done, just to rule out unpleasant possibilities. I had a $10,000 helicopter evacuation, and my bill was $100. I've even had a doctor call me at home while he was on vacation in Florida, just to make sure I'd been properly diagnosed and treated and that I was as comfortable as possible. Lower level staff members are a mixed bag; some are splendid, others are foolish at best. Overall, I feel extremely fortunate to be a Kaiser member. The one regrettable exception is their pharmacy. It seems ineffecient and/or understaffed. Its tier pricing (I'm not sure of the right word for the formulary cost system) charges more for non-generic drugs, even if the generic doesn't work well for the patient. (For my daughter, that means paying $250 a month for a necessary prescription rather than $10 for the generic.) I hope you are able to find a doctor who works well for you. H. In a message dated 5/8/06 10:05:31 PM, lillythdenaghykeogh@... writes: Basically my experience with Kaiser is that if it will cost them any money, they won’t do it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2006 Report Share Posted May 10, 2006 Cool, thanks for the info. I can always ask to be referred to him. Thank you! From: [mailto: ] On Behalf Of flatcat9@... Sent: Tuesday, May 09, 2006 7:50 AM Subject: Re: [ ] question? Lil, my GI in SF in Dr. Shlager. He quickly diagnosed an autoimmune disease I had that most doctors never see in a lifetime. Later, he suspected I also had CD, even though at that time I was obese (due to necesssary treatment for the first disease) and hadn't complained of digestive problems. When the blood test was negative, he did a biopsy, and he followed that up with a second biopsy six months later to confirm that my going GF was resulting in healed vilii -- that is, to confirm the diagnosis. I can't say much for his staff members, but I certainly recommend him as a diagnostician. H. In a message dated 5/8/06 10:05:31 PM, lillythdenaghykeogh@... writes: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2006 Report Share Posted May 18, 2006 Hi Cory Try looking up www.enterolab.com You don't need to go back onto eating gluten again and they don't take blood samples, but stool samples. The website is very good and their service is excellent. They do a variety of tests and explain them well. Good luck Ruth > > So I've been emailing my doctor, who hasn't been giving me good > responses,so I'll ask you. I am trying to arrange to take the blood > test (BLOOD TEST, I'm not getting a biopsy) for celiac, > does anyone have any idea how long I need to be EATING GLUTEN again for > this to be reliable??? I have been on a GF diet for the past two or so > months. > > For anyone that lives in the SF bay area. Does anyone have a Kaiser > doctor recommendation for someone who actually has a clue about > celiac? San , Richmond, or Oakland (preference in that order). > > Thanks so much! This list has been so much help, I really appreciate > you guys. > > Cory > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2006 Report Share Posted May 18, 2006 Re. the question about blood testing - have you looked at www.enterolab.com They don't require you to start eating gluten again and can do gene tests and antibody tests and other tests. They use stool samples not blood samples and their website explains the different tests and the reason they use them. It's quite expensive however and I don't know about insurance coverage - but worth looking at. It is a Dr Fine there who has Celiac disease himself and he does all the testing. I just found that they helped me. Good luck Ruth > > So I've been emailing my doctor, who hasn't been giving me good > responses,so I'll ask you. I am trying to arrange to take the blood > test (BLOOD TEST, I'm not getting a biopsy) for celiac, > does anyone have any idea how long I need to be EATING GLUTEN again for > this to be reliable??? I have been on a GF diet for the past two or so > months. > > For anyone that lives in the SF bay area. Does anyone have a Kaiser > doctor recommendation for someone who actually has a clue about > celiac? San , Richmond, or Oakland (preference in that order). > > Thanks so much! This list has been so much help, I really appreciate > you guys. > > Cory > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 Cory, I ended up having my appointment a week early. (They called me to cancel, and I called back & pitched a big fit, got an apt. the next day). Long story short, I was really sick that day (flu) and forgot to ask about the doc referral. I’ve since called back to request a phone call from my doc (for other reasons as well as your referral). That was Monday. I haven’t heard back from them, even though they said it would be Wednesday at the latest. I have not forgotten about you or your referral (even though I forgot about it during my apt). I will ask her as soon as she calls. Lil From: [mailto: ] On Behalf Of Cory Sent: Monday, May 08, 2006 5:31 PM Subject: [ ] question? So I've been emailing my doctor, who hasn't been giving me good responses,so I'll ask you. I am trying to arrange to take the blood test (BLOOD TEST, I'm not getting a biopsy) for celiac, does anyone have any idea how long I need to be EATING GLUTEN again for this to be reliable??? I have been on a GF diet for the past two or so months. For anyone that lives in the SF bay area. Does anyone have a Kaiser doctor recommendation for someone who actually has a clue about celiac? San , Richmond, or Oakland (preference in that order). Thanks so much! This list has been so much help, I really appreciate you guys. Cory Quote Link to comment Share on other sites More sharing options...
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