I Hate Kaiser!

[flxmanning]

So I went to a nurse practitioner today to try and get a difinitive answer as to if I have celiac disease or not. Before even listening to my symptoms or the fact that my mom has very similar ones, she said, "Are you aware that you are GROSSLY underweight?" Yes, I said, that's part of the reason why I'm here. I tried to explain to her the research that I've put into Celiac, my symptoms, the fact that I've been gluten-free for 2 weeks and have never felt better, etc, but she just wouldn't listen to me. She told me that my blood work for it came up negative for it and that is the best test to see if I have it or not (which from the research I've put in isn't true). She accused me of having anorexia nervosa (sp?) and just wouldn't hear anything I had to say. I told her flat out,"I'm not anorexic, I eat all the time" and she simply said to me,"no one who is anorexic ever says that they are anorexic." Then, she calls my primary care advisor and tells her that I have an eating disorder that I've never been treated for (with me still in the room fuming at the fact that she wouldn't listen to one word I had to say). I went there to make sure that I was being healthy still and still getting everything my body needs since everyone says that you should consult a physician before going on any kind of an exclusion diet be it gluten, wheat, whatever and just to have some kind of answer since I didn't feel right saying I had Celiac Disease without a doctor officially telling it to me, but maybe simply saying I'm "gluten-free" would be right since I feel so much better without it. I just couldn't believe the fact that she wouldn't let me get in a word edgewise (not even to hear my symptoms...isn't that what she's there for?!?!) and she diagnosed me with an eating disorder simply because she had no knowledge about Celiac as far as I can tell and she did have knowledge of the former. Sorry for the long message, but she just made me feel really horrible since I went there to fix this whole thing and she basically told me I was doing it to myself by not eating enough!

[elonwy]

I got accused of being anorexic all through high school. Its hugely frustrating. At least you know that that's NOT what it is. They had me half convinced I was deluding myself and maybe did have an eating disorder since I didn't find out about Celiac until 10 years later. That's really terrible that they are treating you that way, but IMHO HMO's suck.

I went to an HMO ER with an asthma attack when I was 18. Co-worker brought me in. Here I am, skinny pale kid with blue hair and black combat boots. They accuse me of taking drugs, specifically cocaine, because my heart rate was so elevated. I explain that I'm having an asthma attack ( had asthma all though my teen years) and my heart rate is elevated cause I can't breathe. Nobody listens, they plop me down on a bed and draw blood and make me sit for three hours without any treatment waiting for the labs. Of course it comes back with nothing except low potassium levels, I didn't even drink alcohol then. Do I get an apology? Heck no. I get some potassium drink in orange juice and a prescription for an inhalor. Doctor wouldn't even make eye contact.

I shell out the extra bucks and go without other things (think cable TV, etc) in order to have a PPO. I can't deal with HMO BS anymore.

If you think the gluten-free diet is helping you, stick with it. If you can, try to take the argument to someone else, maybe back to your primary care advisor. It took me 8 months of bullying to get an answer out of my docs, and thats with a great GP and PPO care.

Many people here don't have direct positive diagnoses, they just know that gluten-free helped them. Good Luck, stick with it, and don't let em get you down.

Elonwy

[cathzozo]

Just wanted to pop in and say sorry. It is a big frustration when someone doesn't listen to you. And that nurse practitioner was definitely out of line. I personally think you should just stick with being "gluten-free." You know what's best for your body, and you don't need a diagnosis. There isn't anything in those grains that you don't get in other places of your diet. (Well except gluten - which we won't be missing anyways!) Good luck!

As an aside, an emergency room doc tried to convince me one night that I had suddenly developed an allergy to shellfish. And most interestingly, was convinced I had eaten shellfish recently - no matter how many times my husband and I swore that we hadn't had shellfish in more than 2 weeks. Who knows how some of these ideas get stuck in their head sometimes. And it seems like there is certainly a (possibly big) subset of medical professionals who get stuck on their first idea and cannot waiver no matter how much contrary evidence there may be!

Catherine

[mn farm gal]

I had the same go round from doctors, so I went gluten free and feel much better. So I just tell people that I have Celica so they treat me as if I do. Instead of saying it's in my head kind of thing. I know it is very frustrating. Hang in there! I have only been gluten free myself for 3 weeks and feeling better everyday, I will not go back to eating gluten. Good luck!

[Sweetfudge]

That's annoying! Doctors suck sometimes! I was "diagnosed" with just about everything else before celiac came into the picture. Some of these people just don't know their Social Skills 101! I had a nurse at the dermatologist laugh to her assistant as she was looking at my moles (checking for skin cancer)...I had a couple of bad scratches on my arm from my cat, and she said "Wow, your cat looks like she tried to slit your wrists". I have a couple of scars on my wrist where I did try to slit my wrist when I was a teenager...THANKS! So I just sat there as they walked out the door talking about suicidal cats...yeah, talk about NOT COOL! Anyway, there's my story Thanks for the opportunity to vent and bash on the medical idiots out there!

Oh yeah, and as for the negative bloodwork...if you've been eating a gluten free diet, that's most likely why the test is negative. Unless the villi in your intestines are irritated by gluten, they will probably look normal.

[ms-sillyak-screwed]

Where is Kaiser?

[Rachel--24]

I hate Kaiser too!!!

Although they didnt accuse me of being anorexic....they accused me of just about everything else. They never listened to me either....every doc told me the same thing before even listening to my symptoms they were suggesting I see a shrink. I spent over two years wrestling with them and getting nowhere. They never diagnosed me with anything. I found out about gluten on my own and started doing what I had to do to get better.

I left Kaiser the first of the year and have found better doctors. I just got a letter from them stating that they are pulling me out of their chronic pain program since I dont attend. Ummmm...ok...I havent attended in about 2 years and I'm not even a member anymore. My gp (while I was still going there) had never in his carreer tested anyone for Celiac. When I requested the bloodtest he had no idea how to order it and I had to wait over a week for him to get it together. I thought I would hate doctors forever but since leaving Kaiser and putting that nightmare behind me....I've actually found some decent doctors and I'm slowly starting to have some faith again.

[mommida]

Unless you are into hurting yourself you probably won't consume gluten to go through testing. A gluten challenge can be dangerous. My opinion is the testing is not accurate enough to prolong the damage gluten is doing to your body. Just stay on the gluten free diet and say you are gluten intolerant.

L.

[elonwy]

I just remembered that the place where the doc accused me of being on drugs was actually a Kaiser hospital. They really do suck.

Elonwy

[flxmanning]

Thank you so much for the support everyone!

When someone treats you like that, especially when you are concerned and scared in the first place, you start to second guess yourself and think that maybe you are really just some crazy hypocondriac or something. Maybe you are putting these symptoms into your mind and somehow manifesting them physically. Then I remember that I didn't research causes until AFTER the symptoms had already been going on for about 3 years and so how could I possibly have just got some "celiac" idea into my mind and created these problems because of it?

I got a lot of support from my mom and dad today when I called them crying after my appointment. I'm 5'3" tall and 96 lbs. I know that I'm very small, but at my same age (21) my mom was 5'4" tall and 98 lbs. and my dad was 6'2" tall and 140 lbs. (with a 22" waist BTW...smaller than mine even!)! They reassured me that doctors don't know everything and since my mom has experienced my same symptoms her whole life she offered to go to Chinese herbologist with me to seek some sort of alternate remedy to Western medicine.

Thank you so much again! I really can't tell you how much it means to me.

Oh yeah, I remembered later on today that the woman didn't even say, "hello" or "how are you" or anything. She automatically just said, "are you aware that you are GROSSLY underweight?" Talk about rude! Would she have said that same thing to a person struggling to lose rather than gain a couple pounds? No, of course not! Yet somehow she felt it was alright to say that to me when I have confidence issues with how thin I am anyways.

[gfp]

As an aside, an emergency room doc tried to convince me one night that I had suddenly developed an allergy to shellfish. And most interestingly, was convinced I had eaten shellfish recently - no matter how many times my husband and I swore that we hadn't had shellfish in more than 2 weeks. Who knows how some of these ideas get stuck in their head sometimes. And it seems like there is certainly a (possibly big) subset of medical professionals who get stuck on their first idea and cannot waiver no matter how much contrary evidence there may be!

Catherine

When i was 15 my mother was on disability after a hysterectomy and something happened to her cheque.

The police got involved and I was accused of faking her sig and cashing the cheque... the police officer sounded so plausible I almost beleived it... he suggested way's I might have done it and perhaps a friend egged me on etc. etc.

After about 1 hour of this, illegally without my mother present I suddenly asked for the date.

As it happened I had been out of the country with my father and being my first time I had asked for my passport stamping at every border so I informed him it was impossible, I had proof I was in Germany at the time.

(Unfortunately he beleived me and took the opportunity in the 10 mins it took me to find the passport to convince my mother he had me and unless she confessed to accidentally doing it I was going to be charged! )

Anyway.. I was all but convinced I had done it....

[gheidie]

wow I really need to find this thread today.. I have been gluten free for 11 days and yesterday I went to see my Dr and he wouldn't listen to me wanted to put me on meds for headaches even tho he agreed with me that it is probably something I am eating and that I was on to something but lets get rid of the headaches first. I told him I didn't want medication I wanted a blood test... I asked 3 times... I left with a perscription for midrin for migrains. I won't fill it. I feel so much better but I was hoping for a firm diagnoses cuz my family and freinds are asking.. who did the test? How did you find out? I was beginning to doubt myself. I also think I might have an intol to dairy but still working on that since my Dr won't do any tests!!

Very frustrating!!!

[ms-sillyak-screwed]

I've got an idea -I am going to start a link on my blogg where there is a NO-GO doctor list. And when people google the doctors name it will reflect what many of us have found about the way we are treated by these doctors.

[Fiddle-Faddle]

I've got an idea -I am going to start a link on my blogg where there is a NO-GO doctor list. And when people google the doctors name it will reflect what many of us have found about the way we are treated by these doctors.

FANTASTIC IDEA! You are brilliant. Do we PM you the names, reasons, etc? Can we take it one step further and have a kind of anti-directory here on the forum? Could one look up the name of a doctor alphabetically, and read whatever experiences people have had with said doctor?

[flxmanning]

That is the best idea ever!!! I never want another person to go through what I did. I'll shell out her name like you wouldn't believe.

Irony at it's best, though...I googled the woman's name (this was after my visit) and there was actually a woman that wrote this huge article on celiac disease. Turns out, it was a completely different woman in a completely different part of the country, but same name, first and last, same spelling and all. Weird.

[gfp]

That is the best idea ever!!! I never want another person to go through what I did. I'll shell out her name like you wouldn't believe.

Irony at it's best, though...I googled the woman's name (this was after my visit) and there was actually a woman that wrote this huge article on celiac disease. Turns out, it was a completely different woman in a completely different part of the country, but same name, first and last, same spelling and all. Weird.

Better to ask Scott first.... might be legal reasons why not. They don't need to be good legal reasons to cause a lot of hassle and shut down the board just potentially expensive ones.

However you can get webspace hosted elsewhere than the US really cheaply and easily. ($5/mon) or if anyone wanted you could use my server which is in France.

[ms-sillyak-screwed]

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[amber-rose]

Almost the same thing here...except they didnt tell me that i had an eating disorder... even though I was 5'7'' and 99 lbs. Here's my story...

I've always had stomach issues...even as a little kid (I'm now 14) But the last year I was been horribly sick (diarrhea, i even threw up one time after eating 8 pieces of pizza, all celiac disease symptoms, etc.), and I danced 6 days a week. My Aunt has celiac disease, and their has been a family history of lymphyoma (sp?)(probably from celiac disease).

I went to my peditrician, and told her my case, because I suspected that it might be celiac disease. So she did bloodtests on just about everything, right away since I was so underweight. About 2 days later, the doctors called and said I was positive for celiac disease, so they referred me to a gastro. They also made me the "soonest" appointment that they had available....the problem was the appointment wasn't for another 4 months. I was sick and tired of being sick and tired...so I changed to a gluten-free diet, thinking it would just be til the week before my gastro. app. But after a few days of being gluten-free I felt so great it was amazing to me! I never knew before that I could actually feel so great...so I stuck with a gluten-free diet and I still am on it.

I went to my Kaiser Gastro. four months later, and told him that I was eating gluten-free and that I never felt so good before! I told him everything that had been wrong with me, and the family history of celiac disease and lymphoma.

He told me that he wasnt so sure it was celiac disease, he said that it might be IBS, IBD, etc. but it probably wasnt. He said that he'd do a bioposy, but I would have to eat gluten for a week before the bioposy. (Later on to find out that it should be longer than a week...more like 3 months or else it wouldnt even show up on the bioposy.) He said that eating gluten-free and feeling better was no proof! I was so mad at that Dr.!

So thats my story...I'm a bit mad at Kaiser right now.

[majnun]

Been there! Done that! Kaiser anyway! I was with them for twenty years. The best thing that happened to me was moving out of their area. I thought that for an HMO it must have been one of the best so since that's the way everything was going I stayed. Hmppph!!! Your experience is so v-e-rrrrrrrrrrrrry TYPICAL!! I went to some good doctors there but within a year or two they weren't so good anymore. I am thoroughly convinced that the Kaiser system rather quickly destroys both brain cells and human feelings. f there is ANY WAY you can go outside the system, do that whenever you need to. In the meantime try their membership services. There is ususally somewhere there that still has brain cells and human feelings and who LISTENS!!!!!!

[Guest ~jules~]

I have never heard anything good about kaiser. They have a really bad rep. around here too. I had a friend who went through her pregnancy with them. I thought it was horrible that she never saw the same o.b. twice, and she wasn't sure who would deliver her baby, just "whoever" was available at the time I guess. How strange. My family prac. is not a kaiser doc. He's rubbed me the wrong way from day one, I must have seen him 5 or 6 times with this guy before he finally accepted his stupidity and sent me to a g.i. doctor. Nice! I've learned that when you want something done with a doctor you have to ask for it and be firm, he's working for you...

[Swingin' Celiac]

In defense of Kaiser...

Yes I'll admit that those stories are really awful, and it's really easy to generalize, but I do know quite a few g.i. docs there who do have good people/listening skills. I know because I worked there this summer and am now a volunteer, and because I also happen to be a patient there as well. However, the problem is that the doctors are given time limits in their clinical visits which can make the patient experience a little less than satisfactory. I believe its 15 min. for family practice visits and 20 or 40min. with a specialist depending upon whether it's your first visit or a follow up. Also, the doctors are paid a set salary, not by how many patients they see. Private practice doctors need to be nice to get your business so they can stay afloat. Regardless, I've had varying experiences with Kaiser docs. The pediatric g.i. doctors that eventually diagnosed me were absolutely wonderful and were very willing to help. However I had a recent primary care appointment with a jerk who insulted me and didn't seem to give a rip. Bad doctors are found all around the place, they're not all confined to Kaiser, and Kaiser also has very many great doctors as well. The problem is that it's kind of a lottery and you don't get a whole lot of choice as to who your going to see. As for the nurse practitioners/doctors in general, their education and judgment is highly experience and statistics based (especially in primary care). They'll often think of the most common cause of the most blatant sign and start with that (and because most doctors have a big ego, they might have a tendency to not want to change their minds). General Practitioners probably aren't the best (especially NP's) to diagnose celiac disease just because they rarely see it and tend to stick to statistics. I'd ask to see a g.i. doc without prefacing with "I think I might have Celiac." Instead say, "Hey, I'm not anorexic, I want to GAIN weight, please let me get an opinion from a g.i. doc to see if the problem could possibly have to do with an inability to absorb nutrients!" And who knows, it might be something other than Celiac, but I'd demand an upper endoscopy/biopsy and a specialist's opinion at least. They can't just automatically assume eating disorder cause it's most common! Oh and I promise that when I become a doc, I'll be the kind that actually LISTENS to her patients .

[ms-sillyak-screwed]

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[kimjoy24]

I have a unique perspective- I actually work for Kaiser (non-medical role- I process claims). I've worked for them for six years. I also was born at a Kaiser facility and went to their facilities while growing up.

I am not posting to defend them. I haven't even went through Kaiser to deal with my Celiac disease, opting to do the stool/blood tests that you can order online and choose myself to go on a gluten-free diet. Why? Because of the system, which isn't that much different than other HMO's, but just too time-consuming and frustrating. I agree with other posters who said it's a mixed bag, sometimes you'll get a good doc that seems to want to listen to you, other times you get a jerk.

I previously had Blue Cross/Blue Shield and had a terrible experience on just a general physical exam. The doctor's office looked like it belonged in a third world country- they tried to test my hearing next to a fax machine that was going off. And when I first started having serious digestive issues back in college, my parents shelled out $150 to see a specialist (non-Kaiser, we didn't have insurance at this point). I went in with a food journal, notes about the symptoms I was experiencing etc etc. He took one look at me and said, "You look fine." I had a nurse practicioner (non-Kaiser) tell me that my problem was I needed to make friends.

I agree with the previous poster about the time limits that they have for visits, etc. This is the tradeoff with HMO's- lower costs but less personalized care. I agree PPO is better if you can afford it, or think you will be going to the Dr. a lot, but it's no guarantee that you are going to get a great doctor.

And to the original poster, you should definitely file a complaint with member services. That NP was way out of line. I will say that an internal survey was done recently about Kaiser's services and patient satisfaction with services scored quite low. A lot of emphasis is being put on treating members better, from when they check-in for their appointment to when they actually interact with the doctor. We just had a big meeting about this a couple of weeks ago.

[Swingin' Celiac]

Swingin' Celiac -- Have you been DX'ed as a CELIAC?

Yep, sorry I failed to specify in my signature. I'll change it now, thanks. For a little clarification on my diagnosis, a non-Kaiser ear nose and throat doctor gave me a dx of acid reflux, but when I switched to Kaiser, they let me see a couple of ped. g.i. docs and they discovered that I didn't have reflux, but did have celiac disease. It was all rather accidental, but I don't think it would have been found any other way cause my only symptoms were mild bloating, burping, and a chronic sore throat (no one's been able to give me a strait answer about that last one, guess I'm just a freak of nature ). I didn't even know what celiac disease was at the time.

[Crystal Brown]

Thread revival!!

=)

Sooooo, raise of hands, who LOVES Kaiser?

Okay, okay.. I kid. Kinda.

So, I've got me a bit of dilemma, go with Kaiser or fight like the dickens for Aetna? Who would be the lesser of the two evils? I hear all these positive comments for Kaiser on such sites as Consumer Reports and J.D. Power & Associates - but IMO, those aren't the people who are living with a disease that requires ongoing care.

I live in California. Fairfield to be exact. I know of one gastroenteroligst who works for Kaiser that is supposed to be trained in Celiac Disease.. but how does the system work? Can I just go to her or do I need to do the PCP dance?

Does anyone know about the Kaiser in Walnut Creek or Vallejo? Are they trained in the GFD? For instance, John Muir Medical Center in Walnut Creek has gluten-free food on hand for any Celiacs who are admitted to the hospital.. they also have some in the cafeteria for the guests. *tear* I'm gonna miss John Muir.. Okay, sorry.. Anyway, suggestions would be greatly appreciated <--- I say that a lot, but I always mean it