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#31 beelzebubble

 
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Posted 26 March 2004 - 01:13 AM

*sorry this is so long*

not to continue beating a dead horse, but i just wanted to add my two cents. this is more for the medical professionals. i just want to share my story so that they may understand why people distrust/dislike doctors. this is long, bear with me, please. a few pieces of info you may need. i belong to a managed health clinic. a big one. and i am not going to tell you of every appointment that i had with the two doctor's i saw, just the important ones.

when i was 16 was when the stomach problems really started, though i'd had stomachaches and constipation my whole life. it was a time of terrible stress for my family. my mother had just given birth to a baby who we were told was going to die (she had trisomy 18). that night, the vomiting started, and the diarrhea, and the horrible rotten egg burps (ugh, sorry). so, two weeks later i went to the doctor. the diagnosis after a 10 minute evaluation? ibs. no tests, no nothing.

i lived with it. for ten years. the egg burps went away. the vomiting and diarrhea stayed. about 4 years ago, the symptoms changed. i tried to ignore it for a while, but i started noticing that it was really different. i started having problems with constipation instead of diarrhea, and the vomiting became a daily thing. then the vomiting became a many times a day thing. then the pain started. oh, god. it was awful. i've had a few fairly painful things in my life...but this...this was beyond anything i'd ever known.

the pain was infrequent at first, once or twice a month. then it was once or twice a week. then it was everyday. it was dull and sharp at the same time. centered in my upper abdomen. and, i think i mentioned already, awful. so, i went to the doctor. to his credit, he was incredibly nice. he ordered an upper gi barium swallow, and a blood test to check for h. pylori. the results? negative for h. pylori. and the upper gi showed thickening of the folds of my duodenum and obvious irritation. his diagnosis? ulcers. progressively stronger acid inhibitors were prescribed until we hit on one that lessened the pain a bit. i stayed on that for almost a year because every time i came off of it, the pain was back in a matter of days.

now, i was starting to notice other things. like...my hair was falling out. i was getting little dark purple spots under my skin, like bleeding. i was bruising like crazy, and my cuts never seemed to heal properly. i couldn't sleep, but i was exhausted all the time. i was cranky, and spacey. i was doing weird things, like eating my own hair (which didn't help the state of my thinnning hair, ha).

at around the same time, i started a reduced carb diet to control a different condition. my tummy didn't bother me nearly as much. so, i started doing research and i found out about gluten intolerance. i thought, "hmmm, maybe this could be the culprit. i have autoimmune thyroid disease, that matches. i have ibs, that matches. i had ADHD as a kid. etc...etc..." so, i made another appointment and told him what i'd been experiencing and my thoughts. what happened? he laughed at me. literally. and promptly retired (er...not at that exact moment, but a week later)

so, i went to see another doctor. she rolled her eyes at me, but agreed to run some tests. not the test for gluten intolerance. she told me that my hmo did not test for celiac disease. but, she did request tests for malabsorption and a thyroid panel. so, i waited. the tests came back like this:

thyroid normal
borderline anemic-iron low, saturation low
deficient in...magnesium, vitamin k, most b vitamins, and calcium

so, i thought, "great, she'll take me seriously now." i went in to see her. and she sat there, with my test results in front of her and told me that i should see a psychiatrist and tried to write a prescription for anti-depressants. i couldn't believe it. neither could my husband, who was sitting right there with me. i was ill. what more would it have taken for her to see that? it was obviously not in my head, as the blood tests and upper gi proved. i asked if i could see a gastroenterologist. she said no.

i declined the psych and the anti-depressants, and left, absolutely miserable. but, i got a refill on the acid inhibitor and tried to get on with my life. then, one night i got really sick. the pain was unbearable. (this is gross, so don't read if you don't want to.) my diarrhea was so bad that it was just water. really. no color, no bits-i'd passed that stage. and i was vomiting every twenty minutes or so. i couldn't stand, i was too weak. so, i hid in the bedroom, only coming out to visit the bathroom every ten minutes or so. after two or three hours of this, i became scared. i was freezing, but i was drenched with sweat. and the world kept fading in and out in a really alarming way. i went to get my hubby. he stayed with me until the worst of it passed.

i knew then that i had to get her to send me to a specialist. after about a month of phone conferences with her, she said she'd get back to me. two months, and an unreturned phone call later, i decided to go with enterolab. i sent in my stool sample and waited. two weeks after that, i got my results. positive. i promptly started a gluten free diet.

about two weeks after i got the enterolab diagnosis, i got a referral letter in the mail for a gastro. i thought, what the heck. i'll go and see what he has to say. i took my test results with me, and had a long, wonderful conversation with him. he gave me the blood tests for celiac disease, which came back positive. and told me that i should have been sent to him a long time ago. it took two and a half years, and 12 doctor's appointments in between my first appointment after i'd realized that something wasn't right, and my last to get any info. and i didn't even get it from my doctor. i had to get it myself. (of course, it was 14 years in between the time my stomach problems started and the time i went gluten free-that's pretty crappy too)

to wrap this up. not only was i not treated properly by my doctors, but i was LIED TO. the female doctor that i saw told me that my hmo DOES NOT test for celiac disease. but, that's where i got the blood test done when my gastro requested it. i'm not making that up. my hubby was there, and i even wrote it down as she said it. it seems to me, that they were completely unwilling to investigate my issues, even when there was evidence of a real problem in their hands. i had to push and push and push to get anywhere. and i was sooooo sick. i wasn't trying to lead them to a celiac disease diagnosis, i was just trying to get some answers, and they were completely unhelpful. and the worst part of it was, they made me feel like i was wrong, for trying to get answers and in the idea that i was actually ill. to them, i was a hypochondriac. i know that much of the problem lies with the hmo that i am a member of, but a doctor is supposed to CARE that you are ill. aren't they? and what's with diagnosing a person with something without running ANY tests at all? that just seems like a cost cutting measure that could be potentially dangerous for the patient.

i did learn something from all of this though. this may not be a welcome thing to any doctor or nurse who reads this, but...oh well. i acknowledge the fact that a doctor spends an enormous amount of time and money learning about medicine. and i acknowledge the fact that a doctor knows more about THE human body than i do, but they must acknowledge that for all of their learning that i just might know more about MY human body than they do. after all, i live with it everyday.

so, that's part of the reason that i am wary of going to the doctor for help. i hope that helps those people in the medical profession who read this to understand.
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#32 GFdoc

 
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Posted 26 March 2004 - 05:20 AM

a short reply to your long note beezlebub...one answer lies in your opening paragraph that says that you are in a managed care clinic..Managed care plans penalize primary care doctors and/or don't allow them to order certain expensive tests without going through a bothersome and frustrating appeal process. This is a main reason why many docs don't want to order these celiac disease tests- even when asked for directly by the patients. I used to be a doc in HMO plans, too, and I basically had to lie to people - saying I couldn't refer them to a specialist- I could - but it still could be denied by the higher-ups (ie the insurance company) and the truth was that some of these people should have gone (and I should have told them so- but could've lost my job)....you get the idea. (now you know why i refuse to contract with the HMOs anymore - it limits my practice, but at least I'm honest to myself and my patients) My big message here...HMO medicine is less expensive for people, but you get what you pay for...it's not the best way to help folks with real chronic diseases - it's better for those who are healthy and don't need to go to the doctor for anything complicated.

Not to belittle your issues with your doctor - it's horrible....and even people without HMO plans have similar stories. this country's medical community just isn't up to par on celiac disease yet.
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Sara gluten-free since 9/03

#33 beelzebubble

 
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Posted 26 March 2004 - 11:30 AM

sara...i could hug you right now. er...where do you practice? :)
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#34 GFdoc

 
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Posted 26 March 2004 - 12:29 PM

I'm a solo pediatrician - about 25 miles north of Chicago. I'm a totally different kind of doc in that I practice out of my home (!!!) and only have about 350 patients as of now in my practice (usual for a ped. is 2000+) I have no employees...answer the phone myself...schedule all my patients...give the shots...etc. Just like the "old" days, except that I'm young and high-tech with computers, etc. and I'm up-to-date medically (I trained at Northwestern Univ./Children's Memorial Hospital). Oh, and I refuse to contract with ANY insurance companies, so THEY can't tell ME how to practice medicine!

It's different, but it works! My patients are thrilled, and I love my job and my life again (I was ready to quit it all 6 years ago, when I left my old practice)
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Sara gluten-free since 9/03

#35 Laura

 
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Posted 26 March 2004 - 02:22 PM

The doctors at the health center I grew up going to had a real commitment to prevention and education. They got dumped by several HMOs through the years -- they had a desirable patient base so HMOs would contract with them, thinking it could be hugely profitable, and then the doctors would insist on doing things the way they thought was right and the HMO would leave. They finally just went independent and because they're so popular, the local universities kept them as part of the insurance. When I got diagnosed with celiac disease, my dad's doctor tested him immediately, no questions asked.

I think principled doctors and nurses who fight insurance companies to be allowed to deliver better care are basically heroes.

(And I'm really feeling strongly about that today because I saw a total jerk of an orthopedic surgeon yesterday. Although, to be fair, he will do what needs to be done, he's just going to be obnoxious about it.)
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#36 zippyten

 
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Posted 26 March 2004 - 03:51 PM

Since I've posted my opinion a couple of times about my own experiences with doctors, I just wanted to say that I don't think it's doctor-bashing if a person expresses his or her frustration with doctors who have misdiagnosed, or worse, exhibited either inexcusable medical ignorance or inexcusable judgemental attitudes towards their patients. It is very upsetting to be physically ill for months and often years, the way many people with celiac are, and go from doctor to doctor without an answer. It's even more upsetting when a doctor has a condescending or dismissive attitude. However, I'm sure we are all aware that not all doctors are like this. I am more forgiving, though, of honest ignorance than I am of willful dismissal based on a doctor's own ego that a patient couldn't possibly know more than the doctor.

I also believe that much of the fault lies in the research gap and American medical school teaching. If doctors have been taught up until recently (or maybe still are, in some places) that celiac is extremely rare in the U.S. and only presents with certain extreme symptoms, I think we can all agree that it is not altogether the doctor's fault if he or she does not automatically consider what is believed to be a rare diagnosis before a more common one. I think things are changing and celiac disease will become much more readily diagnosed in the next 10 years because of greater public awareness and more up-to-date information for both doctors and the general public.

It is not doctor-bashing to complain about this experience any more than it is teacher-bashing to relate difficulties your child may have had with unpleasant or ignorant teachers -- we all know there are also great teachers out there and there are certainly great doctors. Many of us have been fortunate to have finally found one of them. I am grateful to have found an experienced, knowledgeable gi doctor who was willing to listen to me -- a doctor who seems to understand that his job is to be a partner in caring for my health because I play an important part in my own health care as well.

I've found this board more helpful than I could ever convey, especially in these difficult first few weeks on the gluten-free diet. I don't always agree with what everyone says, but you can't throw the baby out with the bathwater. I feel a lot of compassion and sympathy for all those who've suffered through this illness and I think a certain amount of anger, distress, and even bitterness are to be expected. I hope all those who feel this way, including me, can move on to living a full, healthy, pain-free life.
Ellen
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#37 debmidge

 
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Posted 27 March 2004 - 05:54 AM

Oh.....I was avoiding this board because I felt that I already said too much that is negative..... I really like gfDoc and don't want to alienate you. You have some great gluten-free Kosher receipes on other board - I copied them and hope to make them ASAP.

From my husband's first bout of celiac disease in 1977 to 1995 we've had a traditional health insurance policy ($500 deductible; then 80% of all charges, can see any doctor). From '95 to present, I have an HMO. It was during the time period of 77-95 that every specialist doctor husband saw, except for the correct diagnosis visit, was with a non-HMO doctor. Yep, I paid for all that doctoring out of my own pocket. I can't even blame an HMO for making stupid rules. Conversley, it was the new HMO doctor who made the correct diagnosis and ordered the tests...HMO even paid for a visit to a nutritionist to make sure we are on the correct path.

Overall I feel that HMO's are contrary to Consumer Protection Laws and should not be legal. In addition, a doctor's bonus should not be based on how little they refer patients to specialists or order testing. That should be illegal and again, contrary to Consumer Protection Law. The HMO's practice medicine without licenses.

gfdoc: Not to change the subject, but I have a question: in order to keep your license, how much continuing ed hours per year do you have to do as a specialist? I am asking only because I am in the insurance industry & in my home state in order to stay licensed I have to do 12 hrs a year. I am an insurance underwriter. My co workers & I were wondering if we do the same # as doctors...hmm.....we felt that doctors probably have to do more.

So, please gfdoc, please do not leave this community board. You have some valid counter arguments which should not be overlooked. You're viewpoint is necessary to keep the balance in here. I feel that you have valid opinions to share to all of us and of course, you have gluten-free advice based on fact. You are a valued member of a gluten-free community. We are all we've got, so we've got to stick together. So if you leave this "Coping" board and just do Receipes, I for one will miss you.

Thank you.

Debmidge :)
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#38 GFdoc

 
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Posted 27 March 2004 - 06:18 AM

thanks debmidge, I'll stick around...but I still can't really give out medical advice, nor am I an expert on celiac disease (although I now know a whole lot more than most docs). I can help people on this board try to understand some medical things, and I can give the "other" point of view.
As for the continuing ed question...I am required by my home state to have 50 hours a year of ongoing education...this can be done by taking courses, reading journals , online courses, etc. we must document our hours and show them when we get renewed on our licenses every three years. In addition, the American Academy of Pediatrics is now requiring us to retake a comprehensive exam every 7 years, show continuing ed credits, and get peer reviews, and patient reviews in order to get Board recertification.
On a completely different topic, I am really having fun converting old recipes gluten-free...I like to experiment in the kitchen...it's fun...I hope you like the recipes I post.
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Sara gluten-free since 9/03

#39 debmidge

 
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Posted 28 March 2004 - 07:04 AM

Sara: Thanks for the reply on the number of continuing ed hours. Even though it's a pain in the rump to do, I am glad that it exists because it keeps doctors up to date, as well they should be. My business has the same idea. The insurance industry changes, especially these days, and there aren't enough hours in a day to cover all of the material which has changed. New types of insurance come out or modifications in coverages which would really affect the client negatively. This continuing ed weeds out those salespeople who won't keep up. It has also made some older people in my business retire before they really wanted to because they can't keep up with the changes. I specialize in Property & Casualty insurance - not life insurance/health insurance nor homeowners insurance/personal auto insurance. I do just business insurance. It's stressful because like your profession, you get one person who isn't insured correctly and they have a claim they can sue you for making a mistake with their coverage. Do lawsuits happen? Yes, from time to time. Most clients think we are pests because we offer types of insurance to them that they don't have, but we are doing it so that we know for sure that they don't want it and document in writing their rejection. This way if a claim for that type of insurance happens (like Employment Practices Liability) we can prove that they rejected our offer.

Since my husband was diagnosed in Oct 03 I have been unable to stay late at work or go in on weekends to get caught up. I am busy with the extra baking or here on the forum collecting info, etc. or reading about celiac disease. Also, he misses me as he's alone with his thoughts during the day while I am at work and when I am home I am a useful distraction for him. I've been trying not to stay late/or work after hours (I don't get OT pay anyway) for his sake.

Take care and have a nice Springtime.

Debmidge
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003




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