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CeliacMe

Why Are You Looking For Doctors?

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I was treated like a hypochondriac from my teens to my diagnosis. And yes, I switched doctors when I could not get the one I had at the time to believe in me. In the MANY doctors, not one thought of Celiac. I moved here, from the midwest, almost 4 years ago. When I got worse so fast, the doctors did not really know who I was, in the personality dept. I really feel that if this had happened with my pcp in Illinois, I would not have gotten as bad as I did, before diagnosis. But, in all fairness, she had dealt with my many upper respiratory infections, rare pnuemonia and other issues. She knew I was a fighter. The doctor here did not really have time to know me. When he finally thought of Celiac, he said that he had not thought of this disease since he took his exams in the mid 60's. Since my diagnosis, he has diagnosed over 60 people with Celiac. He also has over 3000 patients, is up there in years, constant back pain and operations. A friend asked me if I was switching doctor's after the late diagnosis and I said what for. He now listens to me and my concerns. Besides I like him, his PA and his staff. A new doctor would probably want to start over with everything. Also, he and his PA do not think they are God, just trying to do the best they can in a short time frame with way too many patients. The East Valley (East of Phoenix) has many bad dopctors and we have a higher then average senior population. My pcp has MANY patients that cannot afford insurance and are on the state program. Many can barely pay for an office visit. They are all treated the same. He does the best he can. But, he does tell every new Celiac to call me for how to shop for this disease and he also tells them that he was trying to find the right words for me to see a shrink "when the lightbulb went off". :P

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Armetta,

THat is an awesome story. AT least the part that the doctor finally diagnosed you and 60 more patients. Thanks for sharing your story. GLad you are getting to help other people with Celiac.

Monica

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I do not feel a hatred for doctors but a great disappointment in the American medical system. It is totally profit driven and because of this attracts the wrong kind of people. This also makes it difficult if not impossible for the good ones to do their job properly. I have two cousins who are doctors and they even admit that 75% of their med school training was writing prescriptions. They were only required to attend a two hour seminar on health and nutrition and had never even heard of Celiac until I told them about it. It is a very broken system that is producing bad doctors.

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I feel a disappointment in the medical system too. I will say though. My husband and I got married almost 9years ago and he has been in medical school and residency for 5 years after that. We have tons of student loans to pay off. He has studied his BUTT off for 9 years. He has slept like 5 hours a night since he started. He has read tons of books in his field of Radiology and scored in the 97th percentile nationwide(sorry, it may sound like I am bragging. I am proud of him, but that isn't my point). My point is, is that he really wants to know as much as he can and I am constantly hearing him say, "there is just SO much to learn". He has to know about every disease and in depth for Radiology. Maybe some of them don't care as much as he does, but these guys go through years without even sleeping trying to learn alot. At least my husband has.

So, this may be a messed up medical system. He will agree, but he says that is all docs think about is whether they will get sued. Every decision they make revolves around this thought. They can't always be perfect! Some I agree should keep more up to date with the latest medical breaks. Like doctors that still don't have a clue about celiac and how common it is now. My mom went the other day and mentioned that I had celiac and her grandson. SHe has been miserable for years. Mainly constipation symptoms, depression, etc. He wouldn't even order the tests. I was SO mad. SHe of course didn't push the issue. He said that that disease has diarhea with it! I told her that wasn't true, but it has taken me 9 months to get her to go to the doctor and then this is what they say!!! UGH! We definitely need to try and make this disease better known. I am not sure what the solution is to that.

Monica

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ME TOO!!! OMG, That was when my pediatrician told me that I was being an "actress" in front of my mother. Every few months I'd throw up with no reason, I'd feel fine and just start throwing up all of the sudden and be sick for days. He just wrote an rx for promethazine and told my mom that i "probably had a virus". This went on countless times, but every time I had diarrhea and said that I thought the milk was making me sick i was an "actress". I hate them so so much.

the whole "hypochondriac" label brings up another sore point with me and Dr.s

When I was a very small child, probably 4 or 5, the Dr. my mom took me to TOLD HER THAT I WAS JUST BEING A HYPOCHONDRIAC about the pain in my belly... FOR THE REST OF MY YOUNG LIFE up until dx at age 33, my mom sincerely believed that I was being a hypochondriac and NEVER took my symptoms seriously. Believe me I was not making this up. I was not making myself spend hours in the bathroom doubled over in pain with explosive diarrhea, I didn't enjoy spending many nights kneeling over the porcelain throne vomiting up my lungs...

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The CANADIAN medical system is MUCH different from the American medical system. In America the drug companies can charge whatever they want, affecting the entire healthcare system in a negative way. Furthermore, you have socialized medicine, while many of us are stuck with HMOs that control our choice as to which doctor we see and what buearucracy we have to go through to see a specialist.

Futhermore, TEACHERS have almost no control over the environment to which they are working within. They work for a company, whether it be the government, or a private school, they are subject to the constraints within that company and may not be managed properly. Very few teachers own and run their own schools.

Many doctors in America have private practices consisting of one, two or a group of doctors. They are pretty much their own boss, unless of course they work in a hospital. Thus, having much control of the environment in which they work. In any case, since doctors are legally classified as "professionals" they can conduct themselves however they see appropriate and fit. The only exception to this rule would be of course to do something illegal. Many forms of negligance are not illegal and are in fact hard to prove in a court of law.

Doctors not listening to their patients, not believing them, not taking the appropriate time to actually CARE for them is a form of negligance. But it is hard to prove this, even if it were, we would have the burden of proving how much damage their negligance caused. Celiac is not like heart disease, it is not sudden and you cannot specify a point in time where the damage occured and what caused.

In the end, the Doctors get away with it, not caring, not listening, and being arrogant everyday because they are their own boss. The way that they make us feel, the way they turn us away when we are truly ill is WRONG! In the United States 17% of accidental deaths are caused by doctors, that is nearly 1 in 5. So out of every people that are killed by accident in the US, approximately 1 in 5 will be killed in a doctor. To say that we are being MEAN or PART OF THE PROBLEM is not completely incorrect. We are complaining among ourselves, because the doctors certainly aren't going to listen.

Which brings me to a new point, Miss Idealistic Canadian Karen, how are the Americans going to cure their doctor problem if the doctors can't even open their blind eyes and deaf ears to their sick patients?!?!?

If you had any common sense, you'd understand that all of these sick people are not cared for by their doctors. That's why the majority of us on here are literally "sick of being sick", as are many other patients.

Doctors in America are perfectly happy to "diagnose" us with symptoms. Examples of this are IBS, Vomiting or Dehydration. To many of us in our jobs explaining a problem is NOT considered doing our jobs.

Example: You call a business analyst to tell you why your return on assets is lower than last year. So they come in and instead of telling you WHY, they tell you that your return on assets is lower than last year. So what happens, the consultant is not going to get paid for that because they DIDNT DO THEIR JOB.

I would feel very differently if all of us were on here because our doctors apologized for not being able to diagnose a problem and believed that we were in fact ill.

WE ARE HERE "doctor bashing" BECAUSE IN OUR TIMES OF NEED MANY, MANY DOCTORS LITERALLY TURNED THEIR BACKS ON US. MANY OF US ENDED UP IN EMERGENCY ROOMS BECAUSE NOBODY WOULD SEE US OR WOULD EVEN ACKNOWLEDGE THAT WE WERE ILL. WHEN IN FACT WE WERE PASSING OUT FROM MALNUTRITION AND DEHYDRATION FROM ALL OF THE VOMITING AND DIARRHEA THAT WE HAD AND NOBODY EVEN CARED TO WONDER WHY. THEY CHOSE TO IGNORE IT.

Fact: the average Celiac suffers for 11 years before being diagnosed. Many of us have been to far more than one, or two doctors, many of us have been to 15 or 20 or 30 doctors. ERdocs, GP, GI, and other specialists. You name it, we've been there. We don't get diagnosed becasue the MAJORITY of us are turned away and labeled as being a "hypochondriac". Once this happend, they turn their blind eyes to us, the suffering.

YOU PEOPLE ACT AS THOUGH WE ARE MAKING IT UP AND WE ARE NOT INTITLED TO OUR OPINIONS. MY OPINION IS THAT I HATE DOCTORS AND THEY ARE THE SCUM OF THE EARTH, THERE IS ABSOLUTELY NOTHING ANYBODY COULD EVER SAY TO CHANGE THAT FEELING. THE END.

I guess the point I am trying to make is that "bashing", whether it be teacher, doctors, or any profession, can cause such a negative effect that ultimately, the care we are trying to improve will, instead, get worse.

Hugs.

Karen

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Which brings me to a new point, Miss Idealistic Canadian Karen, how are the Americans going to cure their doctor problem if the doctors can't even open their blind eyes and deaf ears to their sick patients?!?!?

If you had any common sense, you'd understand that all of these sick people are not cared for by their doctors. That's why the majority of us on here are literally "sick of being sick", as are many other patients.

I wasn't aware that a post trying to bring another point of view posted in good faith could be so misconstrued. I also don't understand how every time I seem to open my mouth lately, I am getting lamb-basted, and frankly, it is getting tired.

I will not be baited, all I can say is that human beings who go through life holding on to such venom end up poisoning their system more than a gluten filled pizza could. It really is ugly.

Have a wonderful day.

Karen

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you obviously have some bias. LET ME SHED SOME LIGHT ON YOUR POST:

"DON'T GO BACK TO THE IDIOTS" - MANY OF US HATE DOCTORS BECAUSE WE HAVE BEEN TO 20 OR MORE AND MAYBE FIND ONE THAT ISN'T A COMPLETE IDIOT (IF YOU'RE LUCKY).

"SKIP THE ONES WITH THE GOD COMPLEXES" - MOST DOCTORS HAVE GOD COMPLEXES, TRUST ME I KNOW I'VE BEEN TO 30!!!!!!!!!!!!!!!!!!!!!!!!!!

OF THE 30 DOCTORS THAT I HAVE SEEN OVER THE YEARS, ALL BUT ONE WAS AND IDIOT OR HAD A GOD COMPLEX AND ALL 29 SIMPLY DID NOT CARE. SURE, BLAME IT ON THE LAWSUITS, IF YOU EVER TOOK A LAW CLASS OR TRIED TO SUE SOMEONE, YOU'D UNDERSTAND HOW HARD IT IS NOT TO HAVE YOUR CASE THROWN OUT!

"IT IS YOUR JOB TO FIND ONE THAT WILL LISTEN AND MEET YOUR NEEDS"- for me this took 18 years, so by your standards its reasonable to spend 18 years of your life looking for a doctor that will listen. that is not only sad, but ridiclous.

"IF THE PERSON HATES DOCTORS SO MUCH THEY COMPARE THEM TO GUNS..."- those statistics are REAL!

"MY ADVICE WOULD BE NOT TO GO TO A DOCTOR"- believe me, I don't want to go to one! ALL OF US DON'T WANT TO GO TO! IN fact, many of us have put it off until it becomes unbearable because we don't want to face the reality that they can't figure out our problem and don't care. (ps nobody wants your advice)

As for your son's "cosmetic issue" the doctors could see it so they beleived you. Furthermore, YOU HAVE NO IDEA WHAT WE HAVE BEEN THROUGH. I'd bet the farm that if your son had Celiac or some weird form of cancer that was hard to diagnose, upon realizing that they couldn't figure out an answer to the problem, they'd accuse you of having munchousin by proxy and call children and families on you!

AS FOR YOUR SNOTTY "when you need a doctor or hospital don't go to one" ATTITUDE- what do you think? the doctors should go on strike because we hate them? any doctor who is hated by their patients should go on strike!

IF YOU HAVEN'T NOTICED- THIS IS AN ONLINE SUPPORT GROUP FOR CELIACS, NOT DOCTORS. MANY OF US HAVE SUFFERED AND BEEN SICK FOR YEARS. MANY OF US HAVE HAD EVERYONE TURN AGAINST US AND THINK OF US AS THE "HYPOCHONDRIAC" BECAUSE OF THE LABEL THAT THE DOCTORS HAVE PUT ON US. HOW ABOUT YOU TELL YOU HUSBAND AND HIS DOCTOR FRIENDS NOT TO GENERALIZE THE CHRONICALLY ILL AND UNDIAGNOSED AS HYPOCHONDRIACS.

THIS IS A PLACE WHERE WE (CELIACS AND CHRONICALLY ILL) SHOULD BE ABLE TO COME AND NOT BE RIDICULED. MANY OF US HAVE BEEN RIDICULED ENOUGH- BY OUR DOCTORS!!! IF YOU WOULD LIKE TO START AN ONLINE DOCTOR SUPPORT GROUP I ENCOURAGE YOU TO DO SO. UNTIL YOU HAVE WALKED IN OUR SHOES, I SUGGEST YOU POST YOUR BIASED COMMENTS ELSEWHERE.

I understand you guys have had some very bad experiences with doctors and I have met some idiots too! I have realized that you have to be your own advocate and the internet is wonderful for that. My husband is a physician though and all the sueing that goes on, well, I am surprised any of them go into medicine. If the person who hates doctors so much and compared them to guns, well, my advice would be to not go to a doctor at all! If you hate them that bad, well I hope you never need a hospital or a doctor!!!

Alot of them are doing their best and for those, I think they should be commended, not grouped into this doctor bashing! I love my ob/gyn (sorry), and my son's pediatrician. It is your job to find one that will listen and meet your needs! Skip the one's with the GOD complex and move on. My oldest son was born with a birth defect and his skull would have been VERY mishapen had he not had corrective surgery, well he is a beautiful little boy, thanks to some wonderful doctors that went to school for MANY years to help these kids that have cosmetic issues. I even had some write off the cost of their part in the surgery. DOn't group all doctors together and don't go back to the idiots!

Monica

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I have just read the last page of this thread, and I appogize if this thought preceded my current post.

There is no drug that can cure this disease, to date. Research and development is based on money for rearch. Since the diet is a cure. Research stops here, because no money will be gernerated by phar. sales.

I am sure that that has already been mentioned. I think that it is a medical closeout because it will make no one rich. :angry:

Oh well, that's my two cents.

Lisa B.

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NOT TRUE- Alba Pharmeaseuticals (sp?) is "working" on a drug. Not that any of us would actually take it. I wouldn't at least, gluten is gross.

I have just read the last page of this thread, and I appogize if this thought preceded my current post.

There is no drug that can cure this disease, to date. Research and development is based on money for rearch. Since the diet is a cure. Research stops here, because no money will be gernerated by phar. sales.

I am sure that that has already been mentioned. I think that it is a medical closeout because it will make no one rich. :angry:

Oh well, that's my two cents.

Lisa B.

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you obviously have some bias. LET ME SHED SOME LIGHT ON YOUR POST:

"DON'T GO BACK TO THE IDIOTS" - MANY OF US HATE DOCTORS BECAUSE WE HAVE BEEN TO 20 OR MORE AND MAYBE FIND ONE THAT ISN'T A COMPLETE IDIOT (IF YOU'RE LUCKY).

"SKIP THE ONES WITH THE GOD COMPLEXES" - MOST DOCTORS HAVE GOD COMPLEXES, TRUST ME I KNOW I'VE BEEN TO 30!!!!!!!!!!!!!!!!!!!!!!!!!!

OF THE 30 DOCTORS THAT I HAVE SEEN OVER THE YEARS, ALL BUT ONE WAS AND IDIOT OR HAD A GOD COMPLEX AND ALL 29 SIMPLY DID NOT CARE. SURE, BLAME IT ON THE LAWSUITS, IF YOU EVER TOOK A LAW CLASS OR TRIED TO SUE SOMEONE, YOU'D UNDERSTAND HOW HARD IT IS NOT TO HAVE YOUR CASE THROWN OUT!

"IT IS YOUR JOB TO FIND ONE THAT WILL LISTEN AND MEET YOUR NEEDS"- for me this took 18 years, so by your standards its reasonable to spend 18 years of your life looking for a doctor that will listen. that is not only sad, but ridiclous.

"IF THE PERSON HATES DOCTORS SO MUCH THEY COMPARE THEM TO GUNS..."- those statistics are REAL!

"MY ADVICE WOULD BE NOT TO GO TO A DOCTOR"- believe me, I don't want to go to one! ALL OF US DON'T WANT TO GO TO! IN fact, many of us have put it off until it becomes unbearable because we don't want to face the reality that they can't figure out our problem and don't care. (ps nobody wants your advice)

As for your son's "cosmetic issue" the doctors could see it so they beleived you. Furthermore, YOU HAVE NO IDEA WHAT WE HAVE BEEN THROUGH. I'd bet the farm that if your son had Celiac or some weird form of cancer that was hard to diagnose, upon realizing that they couldn't figure out an answer to the problem, they'd accuse you of having munchousin by proxy and call children and families on you!

AS FOR YOUR SNOTTY "when you need a doctor or hospital don't go to one" ATTITUDE- what do you think? the doctors should go on strike because we hate them? any doctor who is hated by their patients should go on strike!

IF YOU HAVEN'T NOTICED- THIS IS AN ONLINE SUPPORT GROUP FOR CELIACS, NOT DOCTORS. MANY OF US HAVE SUFFERED AND BEEN SICK FOR YEARS. MANY OF US HAVE HAD EVERYONE TURN AGAINST US AND THINK OF US AS THE "HYPOCHONDRIAC" BECAUSE OF THE LABEL THAT THE DOCTORS HAVE PUT ON US. HOW ABOUT YOU TELL YOU HUSBAND AND HIS DOCTOR FRIENDS NOT TO GENERALIZE THE CHRONICALLY ILL AND UNDIAGNOSED AS HYPOCHONDRIACS.

THIS IS A PLACE WHERE WE (CELIACS AND CHRONICALLY ILL) SHOULD BE ABLE TO COME AND NOT BE RIDICULED. MANY OF US HAVE BEEN RIDICULED ENOUGH- BY OUR DOCTORS!!! IF YOU WOULD LIKE TO START AN ONLINE DOCTOR SUPPORT GROUP I ENCOURAGE YOU TO DO SO. UNTIL YOU HAVE WALKED IN OUR SHOES, I SUGGEST YOU POST YOUR BIASED COMMENTS ELSEWHERE.

:huh:

Now I am really confused...... :blink:

Was this directed at me? :huh:

Karen

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my point exactly, if doctors are so great how come you are self diagnosing? Oh well, at least yours would listen to you! hahah

I like my current doctor. I do the research and tell her what my problems are. Then I tell her what I'd like her to do about it (like which things to test for, or what to prescribe) and she does it. And I have to do all that without her noticing that I am obviously my own doctor and I am just using her to get what I want.

After 52 years of doctors treating me like I have a mental problem, and being told that I'd feel better if I'd only lose weight, she is the perfect doctor for me. Very nice, fairly ignorant and quite compliant, because she realizes that I know what I am talking about most of the time.

This far, everything I was ever diagnosed with that matters, I self diagnosed and had it confirmed by the doctors. That goes for the fibromyalgia, psoriasis, Tourette Syndrome, Asperger Syndrome and now the Celiac disease and the other food intolerances (except for the nightshades, a naturopath figured that out).

The doctor who officially confirmed I have fibromyalgia five years ago did it very reluctantly, but had no choice, because I had all the symptoms (including the pressure points, which is undeniable evidence). But then she told me that if I only 'learned to think more positive, all my little aches and pains would likely go away'. I felt like saying that she should try living with my 'little aches and pains'! I was in agony much of the time. Needless to say, I never went back.

And now I figured out that food intolerances caused the fibro. Doctors NEVER seem to think that there could be a connection between food and physical and/or mental illness.

And my chiropractor is the one who figured out why I had terrible pain in my left foot, prescribed me orthotics and I am fine, the pain went away within a week of wearing them. Before that I went to my doctor, who referred me to an orthopaedic surgeon. That was last June (2005). I was called by the specialist's office two months later, to tell me my appointment was at the end of August in 2006!!!!!!! If I would have had to wait for 'normal' doctors, I'd likely be in a wheelchair by then. :wacko:

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Guess I missed alot. Ok, I'll spend the next three hours reading ALL the posts. I hope every one was polite and respectful of others opinion? :unsure:

Oh, well, that will have to wait. Friday night - I got a date.

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Pamela,

I am sorry you have so much anger an hate in you. I wont try to talk you out of it, (logic stand no chance against pure emotion) but I do wish you would for your own health consider letting it go so that it does not burn you out.

{{{HUGS}}}

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Pamela,

I read your reply and I can only say "WOW!" You must have seen the scum of the earth. I wasn't really offering any advice, just my personal experiences.

Sorry you harbor so much anger.

Hugs,

Monica

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Thanks for the Hugs (those who end their posts in Hugs)

I really feel for those who have had problems with the medical personnel in getting to where we are today and I am glad that those who had problems with the medical personnel can easily forgive and forget; and to those who had no problems with the medical personnnel that's a blessing in your life.

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debmidge,

I thought I would tell you what Neurofibromatosis1 is. It is a genetic disease. Although, we didn't have it. It was a mutation (as they call it). Anyway, for now he has cafe au lait spots (light brown birthmarks). He is normal otherwise, but most problems start at adolescents. It can become very cosmetically disfiguring, as they can get small little benign tumors under their skin. THey are also at greater risk of having cancerous tumors in any part of their body, mainly brain tumors. They can have learning disabilities as they grow. They can have a very wide range of problems or none at all. Sixty percent of cases are very mild. Not sure what mild entails. Anyway, we are hoping and praying that he only has birthmarks and doesn't get all the tumor stuff. It broke my heart of course when we first found out the news. We had to see all kinds of doctors over it. He has to see the eye doctor every year, because they are at increased risk of optic nerve gliomas. Then on top of this he has celiac disease. He is not even on the chart for weight or height and has been gluten free for about 9 months. He is doing so much better and eats normal now and is such a happy little guy. He has white blond hair and bright blue eyes. He is very bright and he follows me everywhere throughout the day. NF1 has alot of different things. It happens to 1/2500 births. I could go on and on, but you can google NF1 and find a world of information. It is really quite overwhelming and we hope and pray he lives a normal life. I of course worry about his size at this point, but they say that that isn't from the NF1. We aren't very huge and my oldest son is only in the 10th percentile. I just wish my little man would GROW!! It can get frustrating, but I have to let it go.

THanks for asking,

Monica

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I am so sorry Pamela that you have so much anger in you. I have seen far more doctor's over my life then you. But, you have to let it go. This horrible anger depletes you and can and will make you sicker.

My doctor could not apologize because it would have opened him up to a lawsuit. He treated me great after that and I knew that was his way of apologizing. And no he does not think he is God. His staff felt terrible that they did not listen to my complaints and they did apologize.

Five days before I was finally diagnosed, I had to call the EMT'S and they felt it was not a medical emergency and so they called an ambulance service that is the largest in the East Valley. There were two policeman there also. When the ambulance people came in, they had been briefed by the police. I have been transported by ambulance several times in the last few years that I lived in Illinois. With the sirens blasting and always ended up in intensive care. I knew the routine. This particular trip did not follow routine. The police and the EMT in the ambulance decided that I just wanted a free ride to the hospital. They did everything they could to try and demean me and expose me to ridicule. I had thin cotton pajamas on and they would not cover me with a blanket (in Jan), even though I asked. They took me out on the stretcher exposed in this way. She asked me why I was in the ambulance and when I tried to explain, she would interrupt. When I said that I had D that sent me 15 or more times to the bathroom, she scoffed. When we had left, the fire dept. EMT's had put all of my meds. in a garbage bag to take to the hospital. And boy were there a lot by that time in my life (now I am down to only a few). I was having a hard time breathing and she asked if I wanted my inhaler, and when I said yes, she said "get it yourself". She told the triage nurse that I was having an anxiety attack. So the triage nurse asked me no questions, just took her word for it. I never got a blanket until I was in the actual staging waiting area. She had also placed me in front of the outside doors and it took a half hour of me sitting there before I got that blanket. I never saw a doctor in the 4 hours I was there. By, the time I realized I was not going to be seen until the next day, I was bent over with tears running down by face. I was by this time all bones and the sling of the wheelchair was pressing on my bones to bring additional pain to me. They would not give me an ice cube because of my throwing up and the D. I signed myself out to go home to die. Because I was dying. I could not let this go - the treatment by the ambulance. I saw two lawyers and was told to let it go. My husband told me to let it go. I did not want a profit, but I did want her out of a job. You want to know something - I HAVE LET IT GO. I used to be able to raise my blood pressure sky high by thinking of it, but not anymore. Also I should point out, that the reason this affected me so much was that the year before I watched my Mother in severe dehydration, where she could not even talk, but follow us with her pleading eyes to do something. My dehydration and pain were minor compared to hers. I now have to live with the thought that my brother and I were several days slow to transfer her from the nursing home to an emergency room. She died in hospice two weeks later - out of pain.

Please let this go.

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Guest BERNESES

There are good doctors and bad doctors out there- just as in any other profession- teaching, business, the service industry.

Many people have suffered as a result of mis-diagnosis or no diagnosis. But doctors are human- they make mistakes. Granted- some of them are a*holes. I remember when I saw my first GI 18 years ago. I was vomiting every meal, every day and I had no idea why. He asked me about stress in my life so I told him I was arguing with my current boyfriend a lot. He told me that was the problem and that breaking up with him would cure my vomiting. We eventually broke up and I still vomit 18 years later! I could go on, but i won't.

I will say this- my best friend is a doctor (dermatologist) and she left the practice she was in because the partners wanted her to pay an exorbitant part of the rent, see a patient every ten minutes (impossible if you're a doctor and you actually have to perform a procedure). She gave up a $300k a year job because she realized she couldn't do a GOOD job in that practice. She's looking for a job (as a doctor) where she can actually be allowed to attend to people's needs but every place she interviews- it's the same old story. And she's good- she's brilliant and kind.

She's love to start her own practice but the overhead, equipment and malpractice insurance are more than she can take on with over $100k in student loans from med school.

there's two sides to every story...

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To Monica:

I will "google" NF1 to find out more. I think Discovery Health had a program about it and that's why I asked to see if it was what I remembered it to be. What is the link with NF1 and celiac? I am sure that every woman who has celiac disease and is contemplating having children would ask this question too.... Also what is link between celiac and your other child's cranial problems? That too would probably give these women info that they need.

Now if they don't feel that your child has NF1, what exactly then do they think it is? Is this a situation where time will tell? Is there a website like NF1.org I should go to?

On the Topic of this thread: With all due respect....

STOP here if you are of the mindset that any criticism of a doctor is unwarranted, and don't read any further. I wouldn't want to offend you. And if that is the case, then I don't know what you are doing on this thread in the first place, to be perfectly honest.

As an aside, I don't stew everyday about what bad doctors we went thru; but the board topic was about this and I felt invited to speak my peace, I never thought that I'd have to justify how I felt and feel bad for feeling for doing so. With all due respect, the people who feel that the criticism of doctors is unwarranted should have skippped this thread altogether because it could be inflammatory -- and it was. It put others in the position of having to defend themselves and explain why they felt the way they did and quite frankly...may I be frank with you? I felt offended having to defend myself ... offended and very hurt. If anywhere, I would think that this message board would be the place I could feel free to express this story.... that the people who utilize this board would understand the most about misplaced trust, disappointments and would have a greater empathy. Well, it's my fault, I was wrong.

What I have relayed to all is just the history of when it started and where we are today.

I don't hate all doctors, but again, I can no longer give them my full trust. Mis-trusting doctors is not doctor-bashing. And I'm the generation that says "tell like it is!" "the truth shall set you free." and "call it what it is." I'm not going to suddenly have amnesia just because my husband is finally correctly diagnosed; it doesn't work that way. Those to don't remember history are doomed to repeat it.

I am probably older than most of you and remember the days when you never dared question a doctor's opinion or even went for a second opinion as you trusted your doctor. Please view my information in the context of those times and understand that some of us were misled by doctors who refused to either learn anything new or research anything if they were clueless.

I would have more respect for a doctor who said in his head "I don't know what I am dealing with, but by the next time I see this patient, I'll be more prepared and do my homework on this matter." Rather than patting the patient on the head and sending him with the idea that it's all in his head.

Again, just to be historical, keeping to the facts, trying to relate this without emotion, these are some of the responses or things that occurred over these past 28 years of misdiagnosis:

1) husband accused of being a junkie by gastro who works for US govt. - only there to get drugs (nothing like having to prove something that isn't true, and in the end not get the necessary testing & having to see another private gastro in order to get "better quality health care." ) My husband, who then is my fiance, breaks our engagement as he's so sick that he feels it is in my best interest that he doesn't marry me. (but we marry in 1979, and I realize that unless he gets better, we will not be able to have children, own a home, go on vacations, or even live comfortably, let alone have money to retire when we are old. So my whole mission is to get him to a doctor who can give us the right answers. ) 1977-1978

2) Well, this is the "better quality health care" : Private practice Gastro tells me that the reason my 5' 10" husband is 127 lbs (after being at a high of 180 the year before) is that he isn't eating enough. (well, that took a lot of research, he should have seen our grocery bills.) This doctor advises my husband to eat whole grain wheat and oats, which is normal for an IBS diagnosis, and this is when other foods bother him and on the advice of the Dr. he now eliminated fried foods, nuts, foods high in fat, fruits and vegetables , and spices along with garlic and onion from his diet as they bother him too much. Husband's weight is so low, I can pick him up as I weigh more than he does.

This same doctor in 1985 refused to send me a copy of his records. We were trying to obtain them so my husband could go on disability and I needed to go through a Senator as my husband had stopped working in 1978 he was so sick and since he hadn't worked in a lot of years we needed a Senator to cut through the "red tape". The Senator's office told me I needed the records before he could help. The doctor said he'd only send them if the Senator wrote him a letter, the Senator's office refused to do a letter and said it was up to us to furnish them with the info. And due to this we dropped the matter. 1978-1985

3) A long succession of Internists and GP's who hear the history and diagnosis and agree with it, without tests or using any other diagnostic tool -- and around this time, it appears that my husband's weight increases to 150, so no one but us is still questionnning the diagnosis. 1985-1989

4) Numerous Internists and GP's over the years - due to not being able to see specialists in HMO plan unless the primary care doctor has reason to send you to one. Again, the doctors are content with the diagnosis of IBS, colitis, etc. and don't see a reason to send him to a gastro. 1989-1994

5) Change doctors again to a medical group that specializes in HMO rules. Primary Care internist is same group as gastros. One of the most prestigious groups in Northern NJ.

Gastro thinks my husband is a kook and sends him to a shrink because he can't find anything wrong with him. This is the gastro that I told that I think my husband is not absorbing fats, nutrients, calories, etc. and this gastro tells me that "IT'S NOTHING LIKE THAT AT ALL!!" I kept thinking, "What did I say that got this doctor all upset that he would speak to me like this?" I started crying in his office and he dismissed us - he was done with us.

Husband develops inguinal hernias - which we later found that it was due to his body being anexoric and feeding off of his own muscle tissue. Husband begins to develop a deep depression - and no longer has desire to live. Finds that he cannot take anti depressants due to side effects. 1994

6) Husband has had a total of 3 hernia surgeries and keeps reherniating as his abs are worn out from this mysterious disease he has. Naturally he's seeing various GP's, internists and surgeons. He has pretty much given up on finding out what his digestive disorder really is as he doesn't want to see another doctor for as long as he lives. 1994-1999

7) During 1999-2003 husband develops a 4th hernia, but refuses to have it fixed as he has given up. He is suicidally depressed and we go from therapist to therapist. He also has a Primary Care doctor who doesn't shed anymore light on his IBS/colitis than the others did. In Fall of 2003 he got deathly sick and went back down to 127 lbs. Changed Gastro again, husband finally had desire to see a new one as he had given up hope, but now it's serious - he might be dying.

New gastro heard his story of how he came down with sickness in 1977 and within the first 3 minutes of hearing this tale Dr. announces that he knows what my husband has: celiac disease. Now the quest for good health begins. Takes about a full year of gluten-free before we see full results, but husband ended up with : duodenitis, duodenal ulcer, gastritis, hiatal hernia, osteoporosis, and perpheripal neuropathy began in legs and arms. Now these all seem quite mild at first glance, but combine them with the ongoing depression, the fact that he could lose his ability to walk or drive car due to the PN getting worse, and normal aging. He also lost padding in his feet which has given him a new set of foot problems where he has to see a podiatrist every 6 weeks to eliminate corns which are growing from the loss of padding (fat loss from foot), as a result of misdiagnosed celiac disease. His weight is about 134 lbs now, barely able to keep this weight on, and all he has to do is come down with a flu or virus and he's in the hospital.

Am I glad we finally got correct diagnosis? YES. I wish this was the doctor he saw years ago, but this gastro was only a kid when my husband first got sick. As for the future, we have no hope as now the complications of misdiagnosed celiac will keep us busy and spending more money on medical care.

To: CeliacMe, Berneses, WGibs, nini, ebrbetty, ursula, mommida, ianm, floridanative & armetta I am your compatriot.

D.

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Guest nini

Deb, I'm glad your hubby finally got the correct dx... I am sorry that you felt like you had to explain your position on this thread though. I do agree with you, this thread is intenddd for letting us vent. Sometimes we need to vent our frustrations without feeling like we have to explain ourselves.

Yes I'm very angry at the dr.s that misdiagnosed me for years. I'm angry that it took me almost dying and my daughter getting very ill before I finally found the answer. My daughters GI dr. refused to even test her for Celiac despite the fact that I had recently been dx'ed with it and she was showing all the same symptoms I had as an infant. If I hadn't stuck to my guns and insisted that her Ped. support me in trying the diet, I never would have had the healthy well adjusted intelligent child that I have today. The ped. GI that saw her is even supposed to be an expert on celiac... but he got that God complex thing and he just KNEW it was only IBS and that I needed to feed her more whole wheat (same thing I had been told by another idiot Dr.)

As I've said before, there are some good Dr.s out there, and there are some doozies... we have to keep in mind that Dr.s are only human and they have egos and they make mistakes. I would never try to sue a Dr. though, but that's just me.

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Guest BERNESES

Debmidge- My God you have been through a lot (as many of us have although your story must be the worst one I've heard yet) and I am glad that your husband finally got diagnosed BUT I'm sure his diagnosis, although it is a relief, at the same time must be very frustrating after all you have been through.

I am plenty angry at a few of my docs. I actually owe one of them $13 for an office visit and my husband wants me to send it all in pennies with an article on celiac's :P

You have EVERY right to be angry. I'm sorry that you felt hurt and like you had to defend yourself too. And more than anything, I hope things get better for you and your husband, Beverly

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On the Topic of this thread: With all due respect....

STOP here if you are of the mindset that any criticism of a doctor is unwarranted, and don't read any further. I wouldn't want to offend you. And if that is the case, then I don't know what you are doing on this thread in the first place, to be perfectly honest.

Well said Deb,

I'm sorry you've had to defend yourself on this thread. My experience with doctors has been an absolute nightmare. Some say....just "fire" them until you find a good one. Well what if that doesnt happen? I fired plenty only to move on to the next idiot. I'm sure it was also in my file that I was some kind of hypocondriach because each and every doctor treated me the same w/out even listening to my symptoms. On a first visit with a new doctor I'd barely get two sentences out and they were recommending I see the psychiatrist....same as the last doc. When I finally did go to the psychiatrist she said there was something psysically wrong that the docs need to figure out. Not even the shrink would help me!! I just got tossed around and insulted like that for 3 years.

I'm sorry, but when you're in pain, off work for 2 years and only getting worse, you dont walk around with a smile on your face thinking..."oh well, this is the real world but I'll just remain positive until someday a miracle happens and one of these doctors all of a sudden realizes I'm truelly sick and decides to try and figure out why."

HELLO...I'm paying them to help me and they werent doing much of anything except filling out the forms to keep me off work. I suppose that would have been great if I really was trying to cheat the system (which one doctor accussed me of). It bacame obvious that the only way I'd EVER be able to go back to work was if I became my own doctor...and I did. I only needed the doc to extend my disability until I has some answers...and he did. As long as he didnt have to put any effort into it he was happy....and he was the BEST of all the doctors I'd seen. It took me about a year to figure out about gluten and get myself well enough to return to work. The doctors were happy..."Good for you....I'm glad you're getting better." blah, blah blah. "When would you like to return to work....just let me know and I'll fill out the papers."

I was pretty much calling the shots the entire time...I researched and requested what tests I'd like to have run and they obliged. Never once did they take the initiative for anything.

Is this the way its suppossed to work? I dont think so...but since I'm living in the REAL world...I guess I'm suppossed to put up with paying my co-pay and getting nothing in return. I spent hundreds of dollars to have people constantly belittle me.

I cant think of any other profession where its acceptable to treat people like crap and still keep your job. I paid into my HMO for 13 years before I became sick and needed a doctor. I got NOTHING out of it.

I'm sure there are some good doctors out there but I never found one. The good ones are so few...and I guarantee the best ones are NOT accepting new patients.

I now have a decent doctor whom I think will get to the bottom of things. He is out of the "mainstream". I've seen this doctor about 3 times and if you were to ask him about my symptoms and what is going on with me...I'm sure he would be able to discuss my situation at great length. If you were to do the same with my last doctor who'm I'd seen well over 50 times...he'd probably not even remember me or my symptoms....and its only been 2 months.

I am very dissapointed with the healthcare in this country....my feelings arent going to change. I dont want or need anyone to tell me I should feel different. I'm not walking around an "angry" person because of it.. but if you bring up the subject I wont hesitate to share my views. This thread was clearly for those who had bad experiences with doctors and want to vent. Why are people bashing the people who want to bash their doctors?

If you are happy with your doctor and want to share your "happy" experience then start a seperate thread.

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CeliacMe,

I really have no idea what I had said to have you unleash your fury upon me, perhaps you have me mixed up with someone else.

Your post starting with "You obviously are biased", quotes things that I have not even said. Maybe you feel resentment towards me because I am Canadian and our medical system differs vastly from yours? Well, I am not going to apologize for being Canadian. Either way, I am really tired of being everybody's whipping post. The following below was TOTALLY uncalled for, IMHO. I respectfully beg to differ, I do believe I have been blessed with common sense.

Which brings me to a new point, Miss Idealistic Canadian Karen, how are the Americans going to cure their doctor problem if the doctors can't even open their blind eyes and deaf ears to their sick patients?!?!?

If you had any common sense, you'd understand that all of these sick people are not cared for by their doctors. That's why the majority of us on here are literally "sick of being sick", as are many other patients.

Also, many others gave opinions along the lines of "doctor bashing" is not going to do us any good, only harm, but as usual, I am the one singled out. Enough.

In fact, I don't know what hurts more, the continued personal attacks, or the fact that NOT ONE SINGLE PERSON piped in to say "Hey, that was uncalled for."

Either way, I am really tired of being everybody's whipping post. I'm going on vacation, at least until this message board doesn't have so much anger and bitterness on it anymore.

Ciao!

Karen

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Karen,

The personal attacks on you are totally uncalled for. You are a breath of fresh air and a beacon of hope and support for so many of us. You are always there to provide support, information and a much needed sense of humor. What I have found in my journeys is that some people are repulsed by positive behavior in the same manner that most of us are repulsed by negative behavior. As soon as someone tries to look at the bright side of things the negative people immediatly launch an attack. They only do this because they want to drag others down to their level. They don't want anyone to rise above it. Because you are so actively involved in this forum it makes you an easy target. I am behind you 100%.

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