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#1 Guest_Disturbed_*

 
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Posted 15 March 2004 - 10:05 AM

I couldnt find any other space for this....Im leaving...I think this communtity has gotten a little more like a way for people to use their might than to help others...I thank all the people who helped me along the way and I seriously hope your quality of health improves for you and your families. I am sorry that I was unable to help many of you. :(



-"It is better to burn out than to fade away..."
-Kurt Cobain
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#2 kejohe

 
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Posted 19 March 2004 - 10:21 AM

:( Wow... thats a bummer and I'm sorry to see you go. I know that my son has been saved several times from potential gluten "accidents" from these wonderful people, so I hope that you will at least come back now and then to check out the information, new & old, even if you don't feel the need to communicate.

Good Luck, and take care of yourself.
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Kathleen
Son has been gluten-free since December 2001

#3 Guest_TESTinME_*

 
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Posted 19 March 2004 - 12:24 PM

Huh, I think this forum is getting better as time goes on..
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#4 GFdoc

 
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Posted 19 March 2004 - 12:50 PM

I'm a bit disappointed in the board too...there is alot of doctor -bashing going on , and alot of misinformation being spread around by non-experts. I'll be on the recipe and baking tips forum only from now on.
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Sara gluten-free since 9/03

#5 angel_jd1

 
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Posted 19 March 2004 - 02:04 PM

I haven't seen any doctor bashing on this board. What I have seen is many individuals sharing their own individual experiences with physicians. It can be ugly for some people. They are sharing their frustrations and problems, which is exactly what is board is all about!!

As far as Mis-information goes.....people are free to put in their two cents to try to correct mis-information. That is yet another purpose of being here and being involved.

We are here to listen to each other and support each other. Those who do not wish to do this are free to go. It is really a shame that they can't be supportive of fellow Celiacs.


Just my two cents.

-Jessica :rolleyes:
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Jessica
Gluten Free since 12-31-2002!!
Kansas

#6 plantime

 
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Posted 19 March 2004 - 02:15 PM

If you are seeing something bad, speak up! Just how does anyone on this board have any "might" over any one else? I am glad for this board, because it gives me links that I wouldn't otherwise have found. I haven't yet spoken to my doctor about having celiac disease or intolerance, I want to get the test done at Enterolab first. People are just telling how bad their doctors have been, and giving advice on how to find a good doctor. I'm sorry you are leaving. Come back if you need to.
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Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

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Posted 19 March 2004 - 02:49 PM

I do not consider us talking about our experiences "Doctor bashing". Unfortunately some doctors out there have a hard time diagnosing this disease or are quick to dismiss it and WE are the ones that suffer because of this.

People come here because they want answers, they ask for our opinions by asking us if "we" think they have celiac disease. None of us are doctors nor do we pretend to be, each of us are simply telling our own stories, there just happens to be a lot of us that have had trouble with our docs.
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#8 guppymom

 
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Posted 20 March 2004 - 10:26 AM

This board helps me stay sane. I'm sorry if I've ever come across as bashing doctors, it certainly wasn't about that. Unfortunately it is true that there are alot of doctors who still think celiac disease is only thin people, scandinavian people, short people...they are learning and that is great.

I haven't read anyone forcing or trying to intimidate anyone else either.

I guess I feel that if we have been through the first rough time of diagnosis and have found certain spots not to walk on because they fell through for us, then we should be able to share that experience so that the people following along don't step on the false spot...they can get further ahead faster and not waste the same time that we did. If that's being a pushy quack or a doctor basher, then I guess that is what it is.

And yes, if you feel things are out of line, you should be reporting those things to the moderator.
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#9 debmidge

 
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Posted 21 March 2004 - 05:13 PM

Yes, I am doctor bashing and I am not apologizing for it! Doctors are arrogant and quite smug when you tell them that you disagree with them. They are not God, although they think they are. I have been let down by so many Gastros I can't begin to enumerate them! Shame on them. Shame on the last doctor who told my husband that his disease was all in his head - that I left that doctor's office in tears!!!! Shame on him for hearing all of the symptoms -- with me telling the doctor that I felt my husband had a malabsorption problem, giving the doctor the celiac disease answer -- and the doctor couldn't swallow his pride and give him a celiac disease antibody blood test!! He just got angry with me! Shame on the doctor, not on me!!!! Shame on that doctor for not digging further into the problem. I have a copy of the records from that medical group, I read where he thought the problem was all in my husband's head and that my husband "just wanted to hear from the doctor that he could eat offending foods again." IBS/colitus was the diagnosis. But it was wrong. The first doctor over 25 years ago said the same thing, but it was wrong. The second doctor gave the same diagnosis, but it was wrong! The THIRD gastro gave the same diagnosis (the one who made me cry) and HE WAS WRONG!! And I have to go along with this and not say anything!!?? That's idiotic! Right is right! So message board drop outs do what you want, but keep in mind that doctors are playing with peoples' lives and families and consistent misdiagnoses combined with arrogance and smugness should not be tolerated. And I for one will expose them when they are wrong and self righteous about it.
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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

#10 GFdoc

 
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Posted 21 March 2004 - 06:04 PM

I have celiac disease and guess what, I AM A DOCTOR TOO! I also didn't get the correct diagnosis for about 15 years. But I also know that the symptoms for celiac disease are incredibly vague, and that there is a HUGE variability in symptoms, depending on the person. I'm sorry that you've had bad experiences with your doctor...but don't badmouth the whole lot of us. It's true that many of us don't know much about celiac disease - it hasn't gotten much attention from American docs until recently.
I'm sorry, but I am not arrogant and smug - just ask any of my patients. I take my profession seriously and I know that I don't know everything about every disease - it's impossible to do that. I just know that when I don't understand something, I ask for help from the specialists, and I do some research on my own. I trust my gut feelings, I listen to my patients (and their parents, since I'm a pediatrician), and guess what - sometimes I'm wrong - hey, I'm human too...but I don't intentionally make mistakes.
I also cringe when I see lots of people on this board asking and giving medical advice - they are only using their own personal experiences to draw from, and unfortunately, many times it may not apply to everyone else. I want to jump in and correct people - but I can't...it's too big a job, and it puts me at huge risk for liability.
I really dislike it when people make huge generalizations about large groups of people (like doctors, for example)...it's just as bad as making ethnic jokes.
thanks for letting ME vent!
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Sara gluten-free since 9/03

#11 mannabbe

 
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Posted 21 March 2004 - 10:07 PM

Sara,
It's nice to have a doc on the Board (and do you own a Bichon also? we have a sweet Bichon puppy named Rosy). You are probably aware that all children in Italy are screend for celiac by age 6 (Healthlink article by E. Early) - I'm wondering if you have the ability, especially since you are a ped doc, to screen all your patients for celiac? I'm curious as to how many hurdles there would be for you to undertake a project like that in the US (and my apologies if my assumumption that you're a US doc is incorrect).

Italy's socialized medicince encourages medical decisions / policies that consider future costs (not just annual costs, which is how our increasingly corporate health care system works). Sigh.

Laurie in Seattle
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#12 Karina

 
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Posted 22 March 2004 - 07:04 AM

Sara,
I appreciated your post! It is easy for things to get out of hand on a public board like this one in terms of giving and receiving medical advice. What I have found is that physicians serve a very important role in healthcare when it comes to diagnosis. In the states, medical treatment is often limited to medication and surgery. Few physicians are well trained in nutrition, or any forms of alternative treatments. As patients, we are responsible for researching any conditions we may have and what available treatments there may be. Medicine is not an exact science and you are right...you just cannot know it all. As a nurse I always urge my patients to take responsibility for their health--not to depend on a DR to "take care of them". Our society has shifted DRS into some sort of super-being category, and they are not super-beings. For the most part what they are is very dedicated, hard-working, well educated people who do the best they can for thier lot of patients. I mentioned that I am a nurse, and I must say that before my own ordeal started I knew very little about celiac disease. Nurses are held accountable for knowing a vast amount of medical knowledge (much of what an MD must know), we do not diagnose or prescribe treatment (unless properly credentialed), but we are legally obligated to have an understanding about disease process and various treatment modalities. Unfortunately, like physicians, our training is often left wanting in the areas of nutritional counseling and alternative therapies---this is improving ever so slightly I believe for both nurses and MD's. We have a long way to go. In the meantime, I am trying to step out of the box if you will, and expand my knowledge base in order to serve my family, myself, and my patients better. It sounds like you do the same Sara--kudos to you!
Karina
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KARINA

#13 angel_jd1

 
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Posted 22 March 2004 - 07:44 AM

I think it would be great if Sara would set a standard for doctors all over the U.S. to become educated about topics that fall between the cracks. That would be AWESOME!!.

However, we still can not overlook the fact that many people on this board have gone through HELL to get diagnosed. The point of the board is to be able to share information and experiences. They should not be reprimanded for doing so.

So ......if you wish to continue living in a hole and ignoring the fact that doctors are missing the diagnosis on Celiac disease, then please feel free. However, if you wish to make a difference for "your medical community" and educate those doctors around you, so they stop missing the diagnosis then YEAH!!! I applaud you for your efforts.

But please do not come onto the board and act as if these people here don't know what they are talking about. They have lived through the experiences, they are not making up the information. It anything I would think it would be a RED FLAG to the medical community to make some changes.

Bad things had to happen in order to make people feel this way about doctors, maybe doctors need to take notice and figure out a way to change things and build trust and respect again with their patients.

-Jessica :rolleyes:
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Jessica
Gluten Free since 12-31-2002!!
Kansas

#14 Guest_TESTinME_*

 
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Posted 22 March 2004 - 08:06 AM

I do not consider us talking about our experiences "Doctor bashing". Unfortunately some doctors out there have a hard time diagnosing this disease or are quick to dismiss it and WE are the ones that suffer because of this.

People come here because they want answers, they ask for our opinions by asking us if "we" think they have celiac disease. None of us are doctors nor do we pretend to be, each of us are simply telling our own stories, there just happens to be a lot of us that have had trouble with our docs.

I agree. My frusteration with doctors is they like to label you, give you a script and send you on your way. I was told I had IBS and should just learn to live with it. That is a cop-out diagnoses in my opinion. Your bowel doesn't get irratible for no reason, it is due to something you are ingesting. I had to figure out my celiac's on my own and when I stopped the wheat, my symptoms went away.
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#15 kejohe

 
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Posted 22 March 2004 - 09:16 AM

I can see both points. I have family members who are in the "medical community" and still more friends who are docs or nurses. Added to that I also have several friends who are diaticians, and these are actualy the ones who, I feel, get shafted the most. Because people think that the diaticians should be the most educated on every nutrition related disorder know to man. But the truth is, that the diaticians are trained more to deal with folks who have diabetes or cardiovascular diseases, all other disorders take a backseat.

Personally, I think this is ridiculous. Why should any nutritional disorder be less important than another? It certainly isn't to the person who has the disease. Just because diabetes is more commonly diagnosed, doesn't mean that it's more common. I feel that it is no fault of the diaticians, or the doctors, that their schooling doesn't give the educational attention to celiac disease that might be necessary, but try and remember that there are probably hundreds of other diseases and disorders that are also overlooked, and the folks with those disease aren't any less important than we are.

What it comes down to is that doctors aren't super-human, and that's okay. What's not okay, is to ignore a patients feelings or suggestions, because then you may as well be telling them that the problems they came to you for in the first place, don't exist. And if "some" doctors are unwilling to trust that the patient knows their own bodies, then they shouldn't be doctors.

I have a great respect for doctors because their education and willingness to help people is absolutly essential to the well being of the world, but we can't forget that they are human, and entitled to some mistakes now and then. We also must remember that it is far more likely for people to talk about the bad stuff that happens than the good stuff, so for every "bad doc" story you hear, there are probably one or two "good doc" stories you don't.

And I'll leave on this note.... My son's doc is FANTASTIC! While, as a parent, I can say that the diagnosis took a little longer than I would have liked, he did make the correct dx, and since then has been more than willing to learn, along with us, and research and educate himself and his staff, so that he can better serve us and his other patients in the future.
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Kathleen
Son has been gluten-free since December 2001




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