Re: Kaiser SF nutritionist--demanding change

[Guest guest]

I am planning to write an email this weekend to the director of health education at kaiser San Francisco. I'll post it here -- if anyone else on this listserv is a member of Kaiser, I hope they'll join me in my campaign to get Kaiser to familiarize their doctors and staff with celiac, provide more information and support for their patients with celiac, and develop protocols for the pharmacy and hospital.

(Bea, I'd rather you not forward what I wrote below to the patient advocate- I wouldn't feel comfortable having my comments about the nutritionists broadcast at Kaiser. You can use the letter I'll post this weekend, however. Thanks!)

Thanks.

Tristan

In a message dated 4/4/08 2:27:56 PM, beagarth@... writes:

Thanks Tristan. I will see if I can contact Ms. Lazzaretto for my mother given she may have the lack of B-1 problem too. Could you tell me which Kaiser hospital(s) she works at?

I continue to be apalled by the lack of service for celiacs at Kaiser. I have a friend whom I plan to contact who works there as a patient advocate who might be able to help. I am thinking of forwarding your note to her if that's OK with you. Please let me know.

Bea

TrVerb@... wrote:

Bea had asked me to let her know the name of the Kaiser SF RD who first figured out the connection between my low B1 levels and celiac. I thought anyone else with Kaiser might be interested in this, as well. Alyssa , RD, is the nutritionist who first thought of the B1-celiac connection:I had a follow-up appointment post-diagnosis with Lazzaretto. I am indebted to Ms. for thinking of celiac, of course (though maybe equally indebted to myself, as I insisted I be tested for it right away, when she recommended I wait to see if my B1 levels would come back up). And I thought Ms. Lazzeretto was very nice. However, ultimately, I think everyone on this listserv probably knows more than the nutritionists do about the ways of celiac. Hell, after a week and a half, I probably know more than they do. It was disappointing (to say the least!) that all Ms. Lazzaretto had for me were a couple of photocopied lists of okay and not okay foods and  recommendations to buy Triumph Dining cards and to contact the woman who runs Sure Foods for more information about celiac.  Note that those recommendations are for services I would have to pay for (aren't I paying Kaiser for this information?Bea

I asked about support groups, and while Kaiser seems to have a support group for pretty much everything under the sun -- including a "healthy shopping" field trip (for gluten eaters!), there's not a one for anything remotely close to celiac. I feel like they drop this bombshell in your lap and then show you the door. (I only met with the nutritionist because I asked to; just as I have a follow-up with a GI guy because I asked.) There's no acknowledgment on the part of Kaiser that this is a major life change and maybe people (like myself) could use a little help dealing with it. Funny that everyone was wanting to throw antidepressants my way when all I wanted was for someone to show medical interest in my symptoms; but now that I have this diagnosis and am alternately okay and freaked out, they just expect me to go on my way without any help whatsoever (and the help I need isn't to be medicated; but a little show of support from my doctors would go a long way for me!)

I also asked about how aware the hospital was of celiac, and was told, "Oh, I think the dietician there would be on top of that." When I said, "How about in terms of medication, because many contain gluten; the dietician isn't involved in that. It's the doctors and nurses who need to know what's up," Ms. Lazzeretto just looked at me blankly. Great. She did admit that most doctors aren't aware of celiac; when I suggested that her department, which is called, after all, Health Education, should educate the medical community at Kaiser about celiac's symptoms and prevalence, I again got the blank look.

Ok, rant is over. Thanks for listening! ;-)

Tristan

**************Planning your summer road trip? Check out AOL Travel Guides. (http://travel.aol.com/travel-guide/united-states?ncid=aoltrv00030000000016)

[Guest guest]

I'm no longer a member of Kaiser. Otherwise, I'd join your campaign. My GI was good; no one else at Kaiser in San Francisco seemed to have a clue about CD.

H.

**************Planning your summer road trip? Check out AOL Travel Guides. (http://travel.aol.com/travel-guide/united-states?ncid=aoltrv00030000000016)