Why Are You Looking For Doctors?

[floridanative]

I think the previous poster makes an excellent point. I do think that we need to be proactive in trying to do something to fix the problem but the question is what? I've been to the ER once b/c my hubby took me against my will so to speak. I had a bad sinus infection but I'd been to the reg. doc two days prior and she said I had allergies. Since I have suffered most of my life with allergies, I knew this was not the case. Left with rx for Allegra (which my ins. wouldn't even pay for) plus can't take it as it keeps me from sleeping. Okay so back to the ER - that doc says I have allergies too and gives me even stroger dose of Allegra (which ins. won't pay for again of course-told me to take Claritin over the counter). Eventually my optometrist of all people who is doing my yearly eye exam, asks me if I'm taking anything for my sinus infection????!!! My eye had been red that morning but by the time I saw the doc it got so bad I would scare small children. So back to the reg. doc the next day and they said 'oh you do have a sinus infection and need an antibiotic'. Ya think?!!

So if some docs (maybe many) can't even recognize when someone has a sinus infection ( even if the patient has told them that's what it is), where is our medical system headed? I felt like the maker of Allegra had just been to see every doc in town and given them a chance to win a free trip to Hawaii if they wrote enough rx's for their drug. I'm not sure who is most at fault - the drug companies or the insurance companies.

I sell promotional products for a living and if I treated my clients the way the most of you have been treated by so many doctors, well let's just say I would be flat broke and out of business without question. Would new legislation of some kind help or just add to the problem? I really am at a loss and think things are going downhill fast which scares me since I'll probably need a good doctor for the rest of my life. My pcp is fine now but she could move away tomorrow and I'd be back to square one.

[CeliacMe]

MANY OF US ARE HELPING OTHER ISSUES! I too got my local grocery store to stock a ton of gluten free items. There was nothing when it first opened, the stuart fine foods of plam city. I complained and before you know it there's nut thins, rice crackers, ener-g bread, pamela's cookies, amy's frozen foods, amy's soups and alexia brand potatoes, etc. I also gave my cousin's fiance a copy of "dangerous grains" for his dad who is researching an ill funded study on the effects of diet. (he's currently researching a villiage in north china who are secluded and eat a diet of fresh fish, veggies and rice- I'm hoping he'll connect the gluten dots).

We just like to come on here to complain that we hate doctors.

This "eloquent debate" has started as the result of others attacking our views about doctors and basically telling us that "it's all in your head" while literally telling us that "we need to find new doctors". The reality is that we've been to dozens of doctors and are sick and tired of being sick and tired. So natrually, we're grumpy to begin with when we come on here, so we get defensive because the doctor lovers haven't wallked a day in our shoes. So since saying mature things like "f-u" and "a-hole" are against the rules, the debate begins.

Bottom line, we're here to jerk and complain about doctors, we don't necessarily think that we're changing anything. We are just sharing our crappy experiences and listening to others.

The only problem with this debate/argument (as I see it) is this.

You're being very passionate, well-spoken, supporting your comments, and even have necessary proof of your claims. But all of that is locked up on an internet chat board. Who in the world, who needs to see this, is reading? How will you affect change by being so eloquent on a chat room board on the internet? The internet is really a vast universe where the best ideas have a tendency to get lost. You really need to stop spending your best energies here, and take your discussion to the broader media where you can promote real change. Sure, you can do some things through the net, but you've got to take it to the real world, give your wrongs a voice and face and make the bigger population hear your issue. I've had problems with drs too. But I'm not as passionate and capable of affecting change because my focus is on other issues... like getting gluten-free foods into more stores.... which I've been so successful with this year that it gives me a reason to smile... But I didn't accomplish that by use of an internet chat room. I hoofed it into stores, I spoke to managers/owners/other parents who went and made requests too... phone calls, emails, included...

I would like to hear what you propose to do to change the status quo. Not being a bully here... just trying to encourage you to take your passion outside of an enclosed chat room. I think you could do a lot of good with your enthusiasm for the subject!

This is an edit for clarity..... The word "you" refers to all who hate the drs and want change. *(I want change too, but as I said, I'm more passionate about a different issue facing celiacs)

[Jnkmnky]

MANY OF US ARE HELPING OTHER ISSUES! I too got my local grocery store to stock a ton of gluten free items. There was nothing when it first opened, the stuart fine foods of plam city. I complained and before you know it there's nut thins, rice crackers, ener-g bread, pamela's cookies, amy's frozen foods, amy's soups and alexia brand potatoes, etc. I also gave my cousin's fiance a copy of "dangerous grains" for his dad who is researching an ill funded study on the effects of diet. (he's currently researching a villiage in north china who are secluded and eat a diet of fresh fish, veggies and rice- I'm hoping he'll connect the gluten dots).

We just like to come on here to complain that we hate doctors.

This "eloquent debate" has started as the result of others attacking our views about doctors and basically telling us that "it's all in your head" while literally telling us that "we need to find new doctors". The reality is that we've been to dozens of doctors and are sick and tired of being sick and tired. So natrually, we're grumpy to begin with when we come on here, so we get defensive because the doctor lovers haven't wallked a day in our shoes. So since saying mature things like "f-u" and "a-hole" are against the rules, the debate begins.

Bottom line, we're here to jerk and complain about doctors, we don't necessarily think that we're changing anything. We are just sharing our crappy experiences and listening to others.

In that case, complain away!

[Guest mvaught]

MANY OF US ARE HELPING OTHER ISSUES! I too got my local grocery store to stock a ton of gluten free items. There was nothing when it first opened, the stuart fine foods of plam city. I complained and before you know it there's nut thins, rice crackers, ener-g bread, pamela's cookies, amy's frozen foods, amy's soups and alexia brand potatoes, etc. I also gave my cousin's fiance a copy of "dangerous grains" for his dad who is researching an ill funded study on the effects of diet. (he's currently researching a villiage in north china who are secluded and eat a diet of fresh fish, veggies and rice- I'm hoping he'll connect the gluten dots).

We just like to come on here to complain that we hate doctors.

This "eloquent debate" has started as the result of others attacking our views about doctors and basically telling us that "it's all in your head" while literally telling us that "we need to find new doctors". The reality is that we've been to dozens of doctors and are sick and tired of being sick and tired. So natrually, we're grumpy to begin with when we come on here, so we get defensive because the doctor lovers haven't wallked a day in our shoes. So since saying mature things like "f-u" and "a-hole" are against the rules, the debate begins.

Bottom line, we're here to jerk and complain about doctors, we don't necessarily think that we're changing anything. We are just sharing our crappy experiences and listening to others.

I agree - I mean, maybe complaining to each other isn't changing the world, but it is helping our personal lives. We are under enough stress - trying to find "good" doctors and trying to cope with the fact the - well like me, are afraid of doctors because just about every one we have been to (urologist aside for me - i like him) has not been willing to listen to us. i know that it is a very stressful experience for me to go to any doctor because they just don't listen and, more importantly don't understand - or try to understand. at least on this cite - we DO all understand each other and understand the stress and anxiety we feel with doctors. i mean - the doctors would tell us to go to shrink for this sort of fear and anxiety when all we really need is to vent it out, listen to each other and then try to live a "normal" life.

you know - i am getting my PhD in compatative studies which consists of two concentrations: film studies and women's studies. those of you that are in any way familiar with the history of the women's movement know that in the mid and late 70's (after all of the protesting of the late 60's, etc), etc - more women participated in what is called "consciousness raising groups" where they shared their experiences and frustrations. they did just what we are doing now - venting frustrations about the beaurocratic structures and those within those structures (their bosses, etc). Well, those women went on to become academics - theorists and hence the fact that there people can do things like get Phd's with their concentrations in WST. My point here is - baby steps. If we need to vent to organize, then we should and others, though they disagree should not be offended. I vented on this thread and feel better - i;m planning to write an academic paper with my husband about being dis/abled and, of course, include celiac - i've already spoken to the editor of a well known academic ournal and he is willing to publish it - so just because we complain, doesn't mean we aren't active in our own unique way!

thanks all of you who listen to me and others vent. thank you - you keep me sane =)

[Guest BERNESES]

Mvaught- That is an excellent point! I'm working on my PhD too- Literacy Education- and I almost thought about changing my dissertation topic to how literacy helps people with chronic illnesses cope. I'm too far in now but it will definitely be a research project and what we are doing right now- writing and replying to each other on this board is literacy. Sometimes just writing about experiences and having people say they're sorry or that they've been there too helps you heal (and then organize!). Well said!

[Rachel--24]

When all this was going down and I was still in my HMO dealing with the BS I was very angry. I wanted to sue these guys. You cant sue an HMO as far as I know. All I could do was go through this big drawn out process and go to arbitration with it. Mainly I was upset because they werent bothering to figure out why I was sick AND they wouldnt release me to another facility because they werent taking me serious. All I wanted was for them to send me somewhere else...it was too much to ask. Nearly everyone I spoke to in the HMO who wasnt a doctor agreed I had a good case against them. In the end I found that everytime I had to deal with the doctors I'd end up stressed, crying and feeling much worse.

Now I'm happy to put it behind me...its not the focus of my life. I'm moving on. Getting out of my HMO this month was like getting out of prison. I'm not someone who would sue anyone and I don't want to deal with the negativity surrounding the past 3 years....its not going to help me get better. I do positive things and try to help others.

However, if I wanna come onto this thread and vent and let out all that I've gone through...I'll do it. The Dr. lovers arent gonna change my feelings about what I went through. They arent going to convince me that there are more good doctors than bad anymore than I'm going to convince them that most doctors suck. The point is....isnt it suppossed to be healthy and even therapeutic to vent sometimes? Why do people have such a problem with that?

JnkMnky,

Believe me....if I had no health issues and could deal with fighting the HMO...I'd do it in a second. I'd make it so they test *everyone* for Celiac when they cant find a diagnosis. Well....I'd try anyways.

I simply dont have the energy for it. I know my health would worsen if I had to continue dealing with those people. Its too much negativeity so I'm just letting it all out on this thread.

[Jnkmnky]

This is a great place to vent about doctors. I hope it helps everyone who needs it. I no longer care either way. I haven't met a dr I like, but I still have hope.

[Guest mvaught]

Mvaught- That is an excellent point! I'm working on my PhD too- Literacy Education- and I almost thought about changing my dissertation topic to how literacy helps people with chronic illnesses cope. I'm too far in now but it will definitely be a research project and what we are doing right now- writing and replying to each other on this board is literacy. Sometimes just writing about experiences and having people say they're sorry or that they've been there too helps you heal (and then organize!). Well said!

BERNSES - yes you are so right about literacy...part of what i do is media criticism/communications/cultural theory which does work on web-based groups such as this. this is totally a form of literacy as well as a form of media communication that relays ideas - people are now their own encoders. anyway, i think that theorists like us can voice the issues we are dealing with.

by the way - my tract is actually called "literature, literacies and linguistics (i got my MA in English). Maybe one day we should think of writing a piece together (after we finish our dissertations - i am currently working on mine too - but is is also on a completely different topic - motherhood, so too late to do something with this for me as well). anyway, if you'd like to discuss more (I actually do have some research about disability already) you can always email me at msharke1@fau.edu or michelle@severinestudios.com

-michelle

[tiredofdoctors]

I think, as patients, we strive to educate our physicians as best we can. I take in valid, appropriate information to my physician -- pulled from the internet -- medline or pubmed -- and often insist that he read it while I'm in the room. I have my list of questions prepared prior to my visit -- to any physician I see. I also think that, simply from our outcomes, they learn as well. My neurologist has learned from my experience -- he now has two patients with the same condition as I do -- but he was able to diagnose them MUCH earlier in their disease process, and long before they were at the disability level that I am.

That being said, it does NOT mean that they are the all-knowing, perfect practitioners that they think they are. They are FREQUENTLY wrong, and they are incredibly reluctant to admit that, or their ignorance with regard to disease processes. THAT is where the frustration lies the most. It is when they refuse to accept valid information or to notice outcomes that they become quite frankly, ignorant asses.

As a health care practitioner, I can tell you that I have had more than one argument with physicians. It did not make me popular with the physicians, but it was the best that I did for my patients. I have been screamed at, put in "my place", threatened and publicly humiliated, but it was all when I presented the physicians with valid, appropriate information. The threat of that is just too much for them -- how dare someone call attention to the fact that they were -- "WRONG??????" -- it just doesn't happen in their minds. When I told my sister's neurosurgeon that she was strong willed, he said "Well, evidently, it runs in the family . . . " I just said, "Well, evidently, my reputation precedes me." He knew, though, that I was going to watch him like a hawk. Thank goodness, he isn't too threatened by that, so she and he have a very good relationship.

That attitude, strongly above others, is the reasons that patients have such poor relationships with their physicians. And, that is why we have this fantastic forum in which we can rant and rave and tell each other how much we HATE the people on whom we must rely and trust to have our better interest in their hands. It is cold comfort, but comfort nonetheless, to know that other people have had the same awful experiences that we have had. It doesn't take away the humiliation we feel during our visit, the smallness which we feel when we are subjected to being ignored or discounted, but it DOES give us a place to vent, express our feelings with other people who have experienced the same, and do this without being judged. Sometimes, we can give each other a different perspective as to how we perceive what the physician said, sometimes we can just commiserate and let the person know that they're not alone. But, this is NOT the place for judgement. That is what I like the most about this forum, and I would be very disappointed if that changed.

[Jnkmnky]

I'm backing out of this discussion. I have nurtured dr hate in the past for very valid reasons... JUST like everyone one here who hates dr is also doing. I just don't hate them anymore. No epiphany, no logic. Just sick of spending an ounce of emotion on them. Peace!

[Timber4est]

I'm backing out of this discussion. I have nurtured dr hate in the past for very valid reasons... JUST like everyone one here who hates dr is also doing. I just don't hate them anymore. No epiphany, no logic. Just sick of spending an ounce of emotion on them. Peace!

You know, why are we fighting our doctors. True, I ran into many who lacked compassion, but the greater issue here is education. Education for both the patient and the physician. If there were more education out there on Celiac, it might be caught earlier. Lets face it, how do you know to test for it if you don't know it exists?

I really only have hate for one physician in the 35 years I have sought treatment for my illness and only because she called me an alcoholic due to my liver problems when I never drank more than a bottle of wine in an entire year over the course of a six month period.

As for the rest, I think it really boils down to public education for all of us. The other "system" we should start waggling our fingers at is not the physicians, rather where their paychecks come from, the insurance companies. It is mind boggling to me how much money not only my insurance company, but my own budget could have saved if I had been diagnosed earlier.

You want to really make a large impact on the world in regards to diagnosis and treatment of Celiac? Put the costs together in all the tests and treatments in mis-diagnosing a Celiac patient for years on end verses the cost of the simple tests required to correctly diagnose or send a "possible" candidate to a nutritionist for a gluten free diet. The insurance companies would start educating their physician base really quick on Celiac if they understood the millions of dollars they would save in the long run on them.

[Guest BERNESES]

The insurance companies would start educating their physician base really quick on Celiac if they understood the millions of dollars they would save in the long run on them.

Ain't that the truth- I can't even fathom how much money I have spent personally over the last year since this whole shindig began. My insurance company paid 80% and I paid 20% during the "crisis" stage and I owed over $2000, so you figure I must have cost them at least $8000. At that point, I had student insurance through my university which costs $1000 so they lost at least $7000 on me in 3 months alone.

I just looked at how much my blood work and visit at Beth Israel costs today- $1800. For a twenty minute visit and four vials of blood. huh?

[debmidge]

Jnkmky: That's right we should bring this info out of this board -- we are trying: my husband was the subject of a recent Wall Street Journal article last Dec. Front page. He only agreed to give the reporter his story in an effort to make Celiac more public and the Reporter's angle (from before he contacted my husband) was to explore the fact that it takes so long to be correctly diagnosed.

I buy and give out celiac pamphlets printed by CSA (to whomever, where ever) so I can say with surety that in addition to our ranting and raving we have other outlets that provide a positive; aren't we allowed this one little indulgence?

CeliacMe: an additional standard that professionals adhere to is also called "Due Dilligence." That term means that the Doctor, lawyer, insurance agent, banking, investments, pharmacist, accountant (notice these are all professional occupations that can be sued for malpractice or Errors & Omissions) has to perform a studied account of the subject (patient or client) and use every modern resource available to diagnose/treat/secure/provide services that would be considered "state of the art" as well as perform a detailed background history of the subject (for Doctors that would be ask questions about the patient's health history) to use in making a correct diagnosis.

I like that idea that the onus be thrown on the insurance companies by providing them with proof that they are overpaying for the length of time it takes to diagnose celiac. So they too have a financial stake in this too. But then again, when the insurance companies feel that they are paying out too much in health costs, they raise their rates and it's back on us consumers again. Why should they care if they are going to recoup their costs? They already have a remedy to recoup those losses.

As to "relationship" with your doctor - that's great, if the doctor allows it. You cannot have a relationship if the other party isn't interested. Also how as a patient do you educate a doctor who doesn't want to be educated? Some don't even like to be told something by a colleague.

Don't Spit In The Wind

[Timber4est]

Actually, here in the state of Utah, we had a company come in, they first bought up all the hospitals they could, then they started "purchasing" the doctors. They really turned the health care of this state into one greedy HMO system. They pinch every penny they can and limit the doctors as to what they can and can't do and what they can and can't give you as far as meds.

If you share with them a way they can save a few bucks, they jump right on it, that is just how they are. They want to keep costs down on their end and true, they raise the rates to us while they lower the rates to doctors and hospitals as far as what they are willing to pay. However, if you show them just how much you can save them in the long run, they will do it AND raise the rates to earn more money.

Lucky for me, I have had the same insurance company for over 15 years. After I was diagnosed with Celiac, one of the first things I did was to request an accounting history on just me. When it arrived, I was shocked as they themselves have paid out just over $250,000 in the past six years alone. This does not include what I have paid out of my pocket. With the exception of one surgery due to a rock climbing injury, $28,000, the rest is all in mis-diagnoses of Celiac. Treating all my symptoms, not the cause.

After I have learned more about Celiac and ask the doctor who found it if he would be willing to speak with my insurance company (yes, he is an owned doctor of theirs), I fully intend on speaking with the board of directors, or at least trying to. They could have saved a minimum of $200,000 on me alone in the past 6 years if the diagnoses had been correct in the beginning.

[Susan123]

Ok....let me ask you this. Did you have "typical" symptoms of Celiac and were your tests positive for it right from the get go?

This isnt the case for everyone. I heard about Celiac on my own and started the diet then asked my doctor to test me. He didnt order the full panel *and* he told me not eating gluten wouldn't affect the test results (2 mistakes right there).My results were negative. It would be great if every person with Celiac or gluten intolerance came back positive on the tests but if you've read the posts on this board you'll find that MANY have negative test results but recover from the diet. Those who had it easy by getting positive results from testing never *had* to become their own doctor or be told it was all in their head. Afterall, Doctors will only believe a patient if the tests *show* something wrong. If the tests don't spell it out for them you get the "all in your head" diagnosis. To this day I dont know if I'm IgA deficient because they never ran the full panel.

All that aside I don't hate ALL doctors. I'm seeing a very knowledgeable doctor right now. He's not in an HMO and he's not mainstream. Its a huge difference all the way around. A difference in how I'm treated and a difference in the care I'm receiving. If you had read my earlier posts you would realize that I dont care that they messed up and failed to diagnose me.....I am angry at the way I was treated. Plain and simple. Just hope that in your lifetime the day never comes that the doctors run some tests on you and dont find an answer to your problems right away. Believe me, you'll see things from a different perspective when they start calling you a a hypocondriach because THEY cant find out whats wrong with you. Doctors ARE arrogant in that way. They'd rather insult you than to think for one second that they are failing at their job. My Endocrinologist (who was good in his field) told me while this was all going on, that whatever is wrong no doctor has been smart enough to figure it out yet. It was not for him to figure out since it was out of his field of course. Anyways when I repeated what he said to my regular doc...he was steamed....to say the least. They do NOT wanna be told that they cant figure something out....after all they're doctors and they know it all!

This goes to show that you can assume something about someone and be totally wrong and narrow minded or tunnel vision. I am by no means classic at all. I am 33 years old and have spent years getting me to this point. I came down with a virus where the "D" didn't go away right away. My doctor tested me for Celiac and my IgA came back 141, IgG was normal and Tissue transglutaminase was normal. Biopsy was normal. "D" went away. Ate gluten for almost two years. Repeat biopsy normal. IgA still over 100. Found out I have a wheat allergy. Genetic markers checked I have one marker not enough to rule it out but not enough to say I have it. MRI scan- areas of white intensity in the white cerebral matter. Indicative of celiac disease but also chrons and colits. Repeat MRI still the same after gluten-free diet. Does that sound classic or like a clear diagnosis? I am gluten-free now. I have seen tons of doctors over the years and will continue to do so. I have faith in their care that has gotten me this far.... without them I would still be sitting at home experiencing symptoms and not knowing why or what to do about it (diet). I choose to get off the couch and do something about my life and not let wheat dictate my life. If a doctor treats me bad I don't see them anymore. There is so much to learn from doctors (especially the knowledge that comes from their patients' experiences). Embrace it rather than shrink from it. Nothing good comes from pulling inward and doubting the world.

[Canadian Karen]

If anyone wishes to brainstorm to find ways to stop these nightmare stories from happening, stop people from having to go through the same hell, to turn this energy into positive action, please see thread in "Publications and Publicity" called "How can we get the message out to doctors". Our little voices scattered throughout North America trying to get the message out is not going to get us anywhere. We need to have a plan and bring that plan forth to Celiac Associations, or whoever it is who organized the Celiac Disease Conferences throughout North America.

I gave my best idea. I hope others will help brainstorm. We just might be able to make a change in this world.

Have a wonderful day.

Karen

[Rachel--24]

Again assuming you know my story or all doctors stories. I am but no means classic at all. I am 33 years old and have spent years getting me to this point. I came down with a virus where the "D" didn't go away right away. My doctor tested me for Celiac and my IgA came back 141, IgG was normal and Tissue transglutaminase was normal. Biopsy was normal. "D" went away. Ate gluten for almost two years. Repeat biopsy normal. IgA still over 100. Found out I have a wheat allergy. Genetic markers checked I have one marker not enough to rule it out but not enough to say I have it. MRI scan- areas of white intensity in the white cerebral matter. Indicative of celiac disease but also chrons and colits. Repeat MRI still the same after gluten-free diet. Does that sound classic or like a clear diagnosis. gluten-free now. Don't assume to know me or my type or my history. I have seen tons of doctors over the years and continue to do so. But unlike you, I will have faith in their care that has gotten me this far without them I would still be sitting at home experiencing symptoms and not knowing why. I choose to get off the couch and do something. If someone treats me bad I don't see them anymore.

Don't assume to know ME...I have never sat around doing nothing for my health. Everyone around me was/is proud and amazed at how much knowledge I aquired and how much determination I had to get better. I NEVER sat around feeling sorry for myself. I was at the doctors ofice at least once a week for 2 years....looking for answers. It wasnt me who wasnt trying. I did all the research and I asked them to order the tests I needed. I was my OWN doctor.I also switched doctors several times and saw numerous "specialists". I probably saw more than 30 doctors in 3 years so dont assume I did nothing for myself. I did EVERYTHING I could possibly do within the limits of my HMO. I've been out of my HMO for 1 month and have already been diagnosed with C.Diff and my new doctor is aggressive in finding out whats wrong since I'm not healed after gluten-free. It sounds like you had your answer all along. A positive blood test in the beginning. If I would have had that I wouldnt have waited to start the diet. As soon as I heard about Celiac I began the diet without having any testing done. I dont think you should imply I did nothing. I got myself well enough to get off disability and return to work. I got myself well enough to get off all the various useless drugs the docs were pushing on me. I got myself well enough to prove to the doctors that there WAS something wrong. I had to order my own tests online to diagnose myself. I had no insurance to cover anything I did outside my HMO....but I did it...and I got answers ON MY OWN. In the end some of these doctors DID acknowledge they had failed and some did offer an apology (with excuses of course). The fact is that they will go on and treat the next person they cant diagnose the same way they treated me....like garbage. 3 doctors told me I should be happy and proud of myself for all I did to regain my health. Guess what...I am proud but it doesnt change the fact that THEY should be ashamed of themselves for neglecting the needs of their patients and leaving them to fend for themselves and not being respectful or compassionate. It sounds to me like you were the one sitting around...you had a positive IgA, a genetic marker and you still chose to *wait* for a doctor to tell you to go gluten-free. I didnt have any of that testing offered to me but if I'd have had that luxery....believe me....I would have done what it took to get my health back. If your doctors werent telling you to try the diet with those test results then it sounds like your doctors suck too.

BTW....in case you didnt notice this thread is for those who want to vent about their *bad* experiences with doctors. I dont have to defend myself to you or anyone else. This was MY experience and it wasnt a good one.

[Judyin Philly]

please see thread in "Publications and Publicity" called "How can we get the message out to doctors". Our little voices scattered throughout North America trying to get the message out is not going to get us anywhere. We need to have a plan and bring that plan forth to Celiac Associations, or whoever it is who organized the Celiac Disease Conferences throughout North America.

I gave my best idea. I hope others will help brainstorm. We just might be able to make a change in this world.

Have a wonderful day.

Karen

Welcome back sister We missed you

Love your idea.

I'm going there now.

Judy in Philly

[jerseyangel]

Karen--What a great idea--it's so frusterating to know there's a problem, have a good idea what could be done to help, but not know how to actually make it happen. You have come up with something that is worth a try. It's got to start somewhere--why not with us! Welcome back--you were missed . Now...any stories about the "one that got away"?

[Guest mvaught]

While we are being active we also need to work on public health...let me rant a little about what happened to me...I didn't have any insurance for years and had to use the public health hospitals/clinics. They pushed a bunch of drugs on me one by one telling me that it is standard to try those first - but then after 2 years of doing what they said (knowing it was all bs), did they try to help me?...No they actually told me that there was nothing they can do for me, even surgeries that they admitted i needed could not be done because, they did not have confidence in their surgeons! I would bring them research and they just said that they had to go by protocol. After two years of being made extremely sick from hormones (they tried treating endo - not even willing to explore celiac or anything else GI), they told me to never come back - EVER, that if they saw me there again they would refuse treatment and ask me to leave or have me removed! At the time, i had no where else to go, because it was done by parish (i lived in louisiana at the time).

I had to save money to go to specialists that would see me a few times and then again tell me they couldn't help me (afraid i would skip out on my bill, not having insurance - even though they always got their bloody cash). I even ended up having a surgery in MEXICO (the country not NEW MX) because of the money thing (that guy was the nicest doctor I've ever had too)-NO ONE in the states would treat me or even let me make an appointment because of the no insurance (and the school I went to at the time only had the option for blanket insurance - which is only for injuries). Unfortuantely, doctors are people and there are a lot of selfish people in this world - they don't give two cents worth when they think you are poor. Now I have crappy student insurance and of course they don't cover crap and once again I will have to pay for doctors that have turned me away - because they, personally, do not care. You can't get someone to listen to you when they are telling you not to come back because "they can't help you" and no one else is willing to even let you make an appointment. greed. greed. greed.

[celiac3270]

[DELETED BY USER]

[Guest mvaught]

Where do I start?

I guess I should start by justifying my qualifications for posting here. CeliacMe, on page two or three, said until you've been starving to death, tired, dying, etc. for 15 yrs. you cannot justly post here. I did that for 14 yrs. and a month, so I'm close enough on time. And I had two problems... celiac and malrotated intestines (which kills a lot of infants, and here I was 14 with it undiagnosed). So essentially, I was malnourished, essentially starving, and at constant risk of dying. And I was misdiagnosed, told I would grow out of it, and told it might be that I wanted to attention. Yet, I still feel no need to bash the doctors, and do not bash doctors.

Why? Because to bash doctors in general is to completely disrespect the profession and to categorically dismiss them as being useless, incompetent, and arrogant. And in my experience, that could not be further from the truth. First pediatrician: dismissed vomiting as being childhood allergies I would grow out of or possibly attention, but still down to earth. Second pediatrician: phenomenal doctor, knew his stuff, old school type of dr who didn't go with drugs for everything, good guy, thought it was cyclic vomiting, but wasn't sure, so sent me to a GI. First GI: diagnosed celiac on first blood panel, while also testing for allergies, diabetes, issues with other organs like pancreas, yada, yada. Tried to find out what was wrong when I still wasn't getting better on gluten-free diet. We changed to Second GI: For second opinion, knew he specialized in celiac disease, at Columbia Celiac Center, the nicest/best doctor I have ever had and ever will have, found malrotated intestines, spends SO much time with patients, one of the nicest people I know and I feel like he's a friend besides being a dr. Third Pediatrician: Pediatrician #2 retired, so we found a new one. He's also thorough and fine--no health issues have arisen with him, but definitely a good dr. As you can see, I've had about 5 drs at this point (not including eye dr. and the like) and only one of them was unhelpful--and he didn't do it out of arrogance--just... ignorance, I guess. Thus, I have no need to bash doctors. I won't let one bad one out of all of them give me a skewed perception of the profession.

Next, why is there a need to "balance out" doctor promoting (see Vydorscope, pg. 1)? Why is it a good thing to start bashing doctors? Is there anything constructive that we'll get out of it? If so, I am blind to it. Why do we want even more negativity in a board that can already veer towards negativity far too easily?

Your gun v. physician statistics: statistics can be skewed very easily. Take this joke about bread:

Of course, this is meant to be a joke, but my point is, your statistical references don't take into account everything else. First, deaths: that doesn't take into account gun wounds, that doesn't take into account people who threaten with guns, but don't actually fire. Second, doctors deal with people who are dying (much of the time). If you try to save a dying person and they end up dying instead of living, is that the same thing as a gun death killing a healthy person who would have kept on living? I'll stop going into this, but it's a point I wanted to make....

this is a thread for people who don't like doctors and talking about it makes them FEEL BETTER. if you don't like it - don't post on this thread. to each his or her own, right. it is pointless to make others feel like they are doing something "wrong" in a space that is created to do just what they are doing. if you haven't noticed the title of thread indicates it is for those who have been frustrated by doctors and yes even those who hate them. if you want to start a thread for people who like their doctors - then do that, but stop criticizing people for doing something that makes them feel better on this thread. you may think it is negative, but it seems as though a lot of people that have posted on here including myself feel better after getting it out (it is not good for anyone to hold in anger or resentment). you know a method that psychiatrists often use is to have people let out their anger/frustrations/etc - all of those feelings that are normally held in for their client to make PROGRESS. The only negative energy on here is that which is coming from those of you that seem to resent us for posting our frustrations on here. Start a new "Doctors actually helped me" thread for yourselves so that we don't have to experience such negative energy coming from you.

[Canadian Karen]

It's not worth it, celiac3270. Just let the venting exhaust itself so we can bury this negativity. It really does bring the board down......

Hugs.

Karen

[teebs in WV]

I guess the title of this post is misleading. I think the title is why so many people who are not "doctor bashers" are responding. The title and the first post are clearly asking people on this forum why they are looking for doctors. It is making people defensive - just like those who are wanting to bash are feeling defensive. If people want to look for doctors, they have a right to do so. Just like those who wish to bash and vent have that right.

What better place to seek advice than this forum? People can learn who to go to, and who to avoid.

I am not bashing..............and I am not supporting. Just an observation.

[Rachel--24]

celiac3270,

Yes, 14 years is a long time to be sick. From reading your history with doctors what I'm seeing is the doctors were trying. You were sent to the GI early on, you were tested and diagnosed with Celiac. It seems like your doctors, even though you had to see a few, were searching for a diagnosis. It may have been slow progress but with each doctor you were getting closer to regaining your health. My story is completely the opposite. My doctors werent trying, they werent ordering tests, they werent listening to me and with each visit I was getting farther away from finding the cause of my illness. Its still unbelievable to me that this was my experience but these doctors did NOTHING. They filled out perscriptions and sent me to a chronic pain clinic so I could learn to LIVE with my pain. The chronic pain clinic and classes were filled with people in wheelchairs or back injuries. I knew I didnt belong there and I knew whatever was happening to me was NOT something that I should or could just learn to live with. The only option they gave me was to go to these classes, seek counseling and get with the psychiatrist for antidepressants.

Our stories are completely different. I think I've already posted that if the doctors were actually DOING something I would not be angry even if it took them 14 years to figure it out...as long as they were TRYING and treating me with respect. I dont hate ALL doctors....just all the ones I saw. I dont see myself trusting doctors anytime in the near future. This is due to the treatment I recieved and nothing else. Maybe someday I'll come across a doctor who changes the way I see things but right now I dont see myself putting my life in the hands of doctors who have no interest in my well being. I'll stick with my naturopath.