Re: Kaiser denies referral to CD specialist

[Guest guest]

I don't understand -- have you been diagnosed as having CD? Are you looking for a biopsy following a negative CD blood test?

What sort of autoimmune disorder specialist do you want to see, and why?

At Kaiser, I was diagnosed in 2000 with a very rare autoimmune disorder that attacks the liver. I was diagnosed and then treated by a GI at Kaiser SF.

Two years later, the same Kaiser GI suspected I had developed CD, although I had no obvious GI symptoms. My blood test for CD was negative. He encouraged me to have a biopsy, which showed I have CD. He followed up six months later with another biopsy, to confirm the diagnosis.

Keep in mind that once you begin eating GF, blood tests and biopsies are likely to show negative, whether or not you have CD.

Best wishes.

H.

In a message dated 1/10/09 5:51:22 PM, benicia236@... writes:

Hello all:

I've recently received a letter from Kaiser denying a referral to a

specialist in autoimmune disorders. This denial is based on a single

negative gliadin antibody test (although multiple indications are

present, a Columbia U. CD specialist says negative blood tests are

common, and a RD has recommended a CD recovery regimen).

Has anyone else had a similar experience with Kaiser? Any thoughts you

have to share on this are welcome.

Kathleen

**************New year...new news. Be the first to know what is making headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)

[Guest guest]

Kaiser in SF was always very helpful to me in terms of CD -- and with everything else, over the 17 years I stayed with them.

H.

In a message dated 1/10/09 5:56:26 PM, beagarth@... writes:

I can only say that overall Kaiser's claim to "live long an prosper" doesn't often

apply to CD. You will have to push for this dear. Make a ruckus. Get an alternative opinion. Assuming you stay with them...

Bea

**************New year...new news. Be the first to know what is making headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)

[Guest guest]

My family of four has had great care at Kaiser. I truly believe they saved my life more than once.

Harper**************New year...new news. Be the first to know what is making headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)

[Guest guest]

I can only say that overall Kaiser's claim to "live long an prosper" doesn't often apply to CD. You will have to push for this dear. Make a ruckus. Get an alternative opinion. Assuming you stay with them...BeaFrom: benicia236 <benicia236@...>Subject: [ ] Kaiser denies referral to CD specialist Date: Saturday, January 10, 2009, 5:50 PM

Hello all:

I've recently received a letter from Kaiser denying a referral to a

specialist in autoimmune disorders. This denial is based on a single

negative gliadin antibody test (although multiple indications are

present, a Columbia U. CD specialist says negative blood tests are

common, and a RD has recommended a CD recovery regimen).

Has anyone else had a similar experience with Kaiser? Any thoughts you

have to share on this are welcome.

Kathleen

[Guest guest]

Dear God, don’t get me started on

Kaiser. They almost killed me. Well not really, but I would still

be incapacitated if it were not for them.

Tell them you were not eating gluten at

the time. Even if it is not true. LIE.

My best advice would be to get the hell out

of the Kaiser system. Barring that, you can always go down to Member

Services and lodge a complaint, and request a referral. It will take

months, and they will most likely deny you over and over, because that’s

what they do, but they DO have people who are paid to help you get the services

you need.

Which Kaiser are you at? If you go

to the one in SF ask for LaShaun at Member Services. She was very nice

& seemed to genuinely want to help me.

Not that all her hard work did me any

good.

Yeah, I’m a little bitter –

but given my experience with them, I doubt anyone could NOT be bitter.

If you need any info or have any questions

about my process, feel free to contact me offline. Mommy macgyver at Comcast

dot net.

(My issue was NOT CD, but another autoimmune

disorder affecting the reproductive system – the issue may not be 100%

the same, but the process is…)

From: [mailto: ] On Behalf Of benicia236

Sent: Saturday, January 10, 2009

5:51 PM

Subject: [ ] Kaiser

denies referral to CD specialist

Hello all:

I've recently received a letter from Kaiser denying a referral to a

specialist in autoimmune disorders. This denial is based on a single

negative gliadin antibody test (although multiple indications are

present, a Columbia U. CD specialist says negative blood tests are

common, and a RD has recommended a CD recovery regimen).

Has anyone else had a similar experience with Kaiser? Any thoughts you

have to share on this are welcome.

Kathleen

[Guest guest]

I am glad to hear that. Unfortunately in the San area that was not my experience. From: flatcat9@... <flatcat9@...>Subject: Re: [ ] Kaiser denies referral to CD specialist Date: Saturday, January 10, 2009, 6:46 PM

Kaiser in SF was always very helpful to me in terms of CD -- and with everything else, over the 17 years I stayed with them.

H.

In a message dated 1/10/09 5:56:26 PM, beagarth (DOT) com writes:

I can only say that overall Kaiser's claim to "live long an prosper" doesn't often

apply to CD. You will have to push for this dear. Make a ruckus. Get an alternative opinion. Assuming you stay with them...

Bea

************ **New year...new news. Be the first to know what is making headlines. (http://www. aol.com/? ncid=emlcntaolco m00000026)

[Guest guest]

I hear you! I even met a doctor who worked at Kaiser who has CD. It took them 11 years to figure out what was happening with her. However I do think they are improving a little as time and necessity have their way... My mother and brother with Down's both have CD as recognized by Kaiser, however in no way have they advised my mom what to do. It was at her insistence. But as she got older and had various symptoms as has my brother no one put two and two together. Ditto with me. I told them I thought I had CD but they made no inquiries and no intervention despite multiple joint problems and chronic flu, colds, bronchitis etc. etc. They just thought for me it was "normal". BeaFrom: Lillyth Denaghy Keogh-Quillan <lillythdenaghykeogh@...>Subject: RE: [ ] Kaiser denies referral to CD specialist Date: Saturday, January 10, 2009, 7:31 PM

Dear God, don¢t get me started on

Kaiser. They almost killed me. Well not really, but I would still

be incapacitated if it were not for them. Tell them you were not eating gluten at

the time. Even if it is not true. LIE. My best advice would be to get the hell out

of the Kaiser system. Barring that, you can always go down to Member

Services and lodge a complaint, and request a referral. It will take

months, and they will most likely deny you over and over, because that¢s

what they do, but they DO have people who are paid to help you get the services

you need. ___

[Guest guest]

Just goes to show everyone is different. Would that more of Kaiser was like that. I believe in time it may be so...Certainly I hope so! We just all have to insist upon it.BeaFrom: flatcat9@... <flatcat9@...>Subject: Re: [ ] Kaiser denies referral to CD specialist Date: Saturday, January 10, 2009, 7:37 PM

My family of four has had great care at Kaiser. I truly believe they saved my life more than once.

Harper************ **New year...new news. Be the first to know what is making headlines. (http://www. aol.com/? ncid=emlcntaolco m00000026)

[Guest guest]

Every Kaiser has an ombudsperson or patient advocate!

> From: benicia236 <benicia236@...>

> Subject: [ ] Kaiser denies referral to CD specialist

>

> Date: Saturday, January 10, 2009, 5:50 PM

> Hello all:

>

> I've recently received a letter from Kaiser denying a

> referral to a

> specialist in autoimmune disorders. This denial is based

> on a single

> negative gliadin antibody test (although multiple

> indications are

> present, a Columbia U. CD specialist says negative blood

> tests are

> common, and a RD has recommended a CD recovery regimen).

>

> Has anyone else had a similar experience with Kaiser? Any

> thoughts you

> have to share on this are welcome.

>

> Kathleen

[Guest guest]

While cd is technically an autoimmune disease, there is no need as far as I can tell to meet with an autoimmune disease specialist since after diagnosis it is a GI doctor who can offer the most information and help. So I don't think it's in any way unreasonable for Kaiser to turn down a request for an autoimmune specialist.

If all tests are negative, I guess having a biopsy might be a way to go, though I'm not sure Kaiser would allow that with negative blood tests... Ultimately, the only way to control cd is through diet, anyway; and maybe your internist would occasionally approve blood tests to show your diet is working.

What is a CD recovery regimen? Is that different than just going on s gf diet?

In a message dated 1/10/09 7:32:00 PM, lillythdenaghykeogh@... writes:

Dear God, don’t get me started on Kaiser.  They almost killed me.  Well not really, but I would still be incapacitated if it were not for them.

Tell them you were not eating gluten at the time.  Even if it is not true.  LIE.

My best advice would be to get the hell out of the Kaiser system.  Barring that, you can always go down to Member Services and lodge a complaint, and request a referral.  It will take months, and they will most likely deny you over and over, because that’s what they do, but they DO have people who are paid to help you get the services you need.

Which Kaiser are you at?  If you go to the one in SF ask for LaShaun at Member Services.  She was very nice & seemed to genuinely want to help me.

Not that all her hard work did me any good.

Yeah, I’m a little bitter – but given my experience with them, I doubt anyone could NOT be bitter.

If you need any info or have any questions about my process, feel free to contact me offline.  Mommy macgyver at Comcast dot net.

(My issue was NOT CD, but another autoimmune disorder affecting the reproductive system – the issue may not be 100% the same, but the process is…)

From: <st1>celiacba <st1>celiac <s [mailto: [mailto:<st1> [mailto:<st [m] On Behalf Of benicia236

Sent: Saturday, January 10, 2009 5:51 PM

<st1>celiacba <st1>celiac <s

Subject: [ ] Kaiser denies referral to CD specialist

Hello all:

I've recently received a letter from Kaiser denying a referral to a

specialist in autoimmune disorders. This denial is based on a single

negative gliadin antibody test (although multiple indications are

present, a Columbia U. CD specialist says negative blood tests are

common, and a RD has recommended a CD recovery regimen).

Has anyone else had a similar experience with Kaiser? Any thoughts you

have to share on this are welcome.

Kathleen

**************A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol?redir=http://www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=DecemailfooterNO62)

[Guest guest]

At Kaiser SF, 2002 appx, my GI ordered CD blood test that was negative. He did a biopsy, anyway.

I don't know what sort of AD specialist you'd want for CD alone; typically GI deals with CD.

I haven't heard the term "CD recovery regime". It sounds wonderfully positive -- I like that!

I'm now at UCSF, and CD has been treated there the same as it was at Kaiser. That is, I follow a GF diet, meeting with a GI if problems arise. I've had three, maybe four endoscopies over the past few years because of other difficulties. I also see a hepatologist for an autoimmune disease that attacks the liver.

H.

CD dx 22002 at Kaiser

In a message dated 1/11/09 2:06:46 PM, TrVerb@... writes:

While cd is technically an autoimmune disease, there is no need as far as I can tell to meet with an autoimmune disease specialist since after diagnosis it is a GI doctor who can offer the most information and help. So I don't think it's in any way unreasonable for Kaiser to turn down a request for an autoimmune specialist.

If all tests are negative, I guess having a biopsy might be a way to go, though I'm not sure Kaiser would allow that with negative blood tests... Ultimately, the only way to control cd is through diet, anyway; and maybe your internist would occasionally approve blood tests to show your diet is working.

What is a CD recovery regimen? Is that different than just going on s gf diet?

**************New year...new news. Be the first to know what is making headlines. (http://www.aol.com/?ncid=emlcntaolcom00000026)