It Took One Week To Be Calm Enough To Write This

[mamabear]

Ok, I think I can write about it now without popping my cork.

Went to a medical meeting last week about constipation, and asked what I thought was a reasonable question about the incidence of celiac disease presenting as constipation in his practice. He asked if the audience believed the incidence in the population was as reported, and too many of them(mostly GI's in the room) said no.....it was more rare than 1 in 133! He's even a native Australian!!!! The speaker said "everyone now thinks they have a 'touch' of sprue" and that it has built up into cult status!! I felt like I needed to be physically restrained !! I carefully took note of the ones nodding their heads to Dr R. McCallum's opinions. He is at the University of Kansas, and is a dept chair for GI motility. I basically decided to "behave".....I can learn more about them and their attitiudes if I keep my cool. But I wanted my "cult" friends to know!!!!!!!!!!!

[Ridgewalker]

OMG. Are we taking steps backward instead of forward? Between this and the article BBC News put out... this is really infuriating.

That's not even to mention the blatant cattle behavior of the audience members. Hand someone a microphone and put them on stage, and everyone will agree with him. Dr. McCallum sounds like the cult leader now, doesn't he?

-Sarah

[melmak5]

That is a really interesting point. I wonder if patients have been approaching them with "a touch of sprue" in the sense that people have been going to office visits and asking "could this be celiac?"

I also think these comments further the "9 years for a diagnosis" problem in America.

Is there a way for you to in/formally respond to this group of professionals? Perhaps in a very polite way say that some of the comments made/subjects raised concerned you and... [insert your awesome retort and information here].

[tom]

OMG. Are we taking steps backward instead of forward?

O

M

G

is right!!

The dismissive attitude is particularly annoying.

[jerseyangel]

Ann, I don't even know what to say...is there any other disease that they dismiss out of hand like this?

It is just so frustrating

[Canadian Karen]

Ok, I think I can write about it now without popping my cork.

Went to a medical meeting last week about constipation, and asked what I thought was a reasonable question about the incidence of celiac disease presenting as constipation in his practice. He asked if the audience believed the incidence in the population was as reported, and too many of them(mostly GI's in the room) said no.....it was more rare than 1 in 133! He's even a native Australian!!!! The speaker said "everyone now thinks they have a 'touch' of sprue" and that it has built up into cult status!! I felt like I needed to be physically restrained !! I carefully took note of the ones nodding their heads to Dr R. McCallum's opinions. He is at the University of Kansas, and is a dept chair for GI motility. I basically decided to "behave".....I can learn more about them and their attitiudes if I keep my cool. But I wanted my "cult" friends to know!!!!!!!!!!!

Oh, Good Lord! Sheesh!

It's a good thing us celiacs are a tenacious bunch, considering the number of times we get beaten down!

Look long term - We Will Prevail!!!!!!!!!!

[blueeyedmanda]

This is nuts! I am at a loss of words....

[JennyC]

I can't believe they would say such things, obviously they have a bias against celiac disease before they even see their patients. This is especially troublesome since this disease is very hard to get diagnosed with and also considering many people with this disease are asymptomatic and not diagnosed.

[Jestgar]

Ann, I don't even know what to say...is there any other disease that they dismiss out of hand like this?

I think the blanket answer to that is: yes, almost anything that is mostly presented by women.

Fibromyalgia

CFS

Lyme

heart attack without chest pain

...

we all should just shut up and let those oh so much more clever men take care of us

[Fiddle-Faddle]

I think the blanket answer to that is: yes, almost anything that is mostly presented by women.

Fibromyalgia

CFS

Lyme

heart attack without chest pain

...

we all should just shut up and let those oh so much more clever men take care of us

You are SO right!

In January of '06, I was hit-and-run by a car while riding my bicycle, resulting in severe shoulder injuries. The orthopedist patted me on the head and told me I'd be fine, and that he didn't need to order any additional tests, as he knew exactly what I'd done, I'd dislocated my shoulder but all I needed was a month in a sling.

Later tests showed that I had torn cartilage, separated AC joint, and torn tendons, with one tendon torn off the bone. The scar tissue that had formed during the month of immobilisation had to be stretched and torn in order for me to regain motion--very lengthy process and extremely painful.

The kicker is, I'm a violinist for the Pittsburgh Symphony.

He very nearly destroyed my career. Because the one arm was literally unusable for so long, the other shoulder ended up with a torn tendon from overuse. It took a year and a half for me to return to work, and now, nearly two years later, I am still in physical therapy, as I'm still having difficulties with both shoulders.

And you know if I'd been a man, the first thing he would have done would have been to order an MRI.

Sorry for the rant--I just wanted to say that you are right tht doctors tend to diss women as a matter of general principle.

[jerseyangel]

I think the blanket answer to that is: yes, almost anything that is mostly presented by women.

Fibromyalgia

CFS

Lyme

heart attack without chest pain

...

we all should just shut up and let those oh so much more clever men take care of us

You're absolutely right, Jestgar.

[SunnyDyRain]

I am appalled.

I wonder if his brushing off of Celiac may have something to do with the pharmacutical company in his pocket. Doctors get money for pushing drugs, if they run us around for 10 years drug hopping that is money they would not get that if they diagnose us correctly the first time.

I think if Alba gets a pill for us, even if it to help with small amounts of CC and they get into the pockets of Dr's our daignosis rate will go up. It's synical... money talks even when they are dealing with our health.

[Canadian Karen]

I am appalled.

I wonder if his brushing off of Celiac may have something to do with the pharmacutical company in his pocket.

I think you are exactly right - except I think that the doctor is in THEIR pocket!

Why do doctors think it is okay to be puppets for the pharmaceutical companies?

They should change to Hypocritic Oath (or whatever it's called.... ) to have them pledge NEVER to sell out their patients to pharmaceutical companies......

[Lisa]

Ann,

Did it make you mad enough to start that "Cult" Clinic. I will be first in line.

[tom]

Oops wrong door . . . .

<backs out>

<sticks head back thrugh door> hey Goosey!! now ya got me thinking pizza . ... .time sure flew w/ all of us there. Next time we need at least double.

[mamabear]

To everyone who responded-----

Yes, he really said just that. He did get a couple of points right about celiac.....most adults are now found 2* to being iron deficient, and he did say he screened IBS patients for celiac. BUT!!

Calling us a cult is insulting and demeaning. He was not aware I have celiac, nor was I willing to share that info after he "outed" himself. There were a couple of GI's in the group who are celiac enlightened, but I'm afraid we are just "board questions" for the bulk of them. I wish I were 15 years younger and I'd do my own GI fellowship! And Lisa, the thought of my "cult clinic" is tickling my grey matter. It would require a few good GI's(sounds like an Army recruitment), a good rheumatologist, a good neurologist and another Internist or two who can listen and learn. All pipe dreams, I'm afraid......so for now, just one at a time.

And Patti, I can't think of anything but celiac and fibromyalgia that seems so mismanaged and doubted. Guess if you have to think longer than one lab value,it's a problem. I had another local GI tell me celiacs don't have any symptoms!! I asked if he remembered that I had it?? He's also the same one that told me celiacs don't have reflux......no connection, yeah, right!.I've had to rethink any referrals down that path unless it's strictly a technician that I need!

Thanks guys for letting me rant.....

[KAG]

I have been modifying my diet (without the help of doctors) for over 10 years. I have pretty much gluten free for most of that time. It took a lot of experimenting and I wish that I would have known about this site earlier. Anyway, I did have precancerous polyps 10 years ago and needed a GI doctor to do another colonoscopy. I was having new problems too. (I guess the only positive from this whole experience would be that I found out, on my own, that I do not digest eggs.) I just completed all the tests and for my follow up visit with my doctor he was really a jerk. He said that it wasn't sprue because the blood test and biopsy came back negative (I was only back on gluten for 3 weeks), and while my absorption tests came back low, I was still absorbing food, and, the most obnoxious thing he said was that it wasn't sprue because I did not loose any weight since he weighed me three months ago. He dismissed any problems I started having due to being on gluten and that if his patients decided on their own to modify their diets it would be ON THEIR OWN. He said that if it were a bacterial overgrowth, he didn't have the equipment to test that and I would be on my own again. I don't understand why he was so pissed off and took it out on me. I should have walked away from the beginning when he said that he didn't like to diagnose sprue because the diet was too limiting.

[mamabear]

I have been modifying my diet (without the help of doctors) for over 10 years. I have pretty much gluten free for most of that time. It took a lot of experimenting and I wish that I would have known about this site earlier. Anyway, I did have precancerous polyps 10 years ago and needed a GI doctor to do another colonoscopy. I was having new problems too. (I guess the only positive from this whole experience would be that I found out, on my own, that I do not digest eggs.) I just completed all the tests and for my follow up visit with my doctor he was really a jerk. He said that it wasn't sprue because the blood test and biopsy came back negative (I was only back on gluten for 3 weeks), and while my absorption tests came back low, I was still absorbing food, and, the most obnoxious thing he said was that it wasn't sprue because I did not loose any weight since he weighed me three months ago. He dismissed any problems I started having due to being on gluten and that if his patients decided on their own to modify their diets it would be ON THEIR OWN. He said that if it were a bacterial overgrowth, he didn't have the equipment to test that and I would be on my own again. I don't understand why he was so pissed off and took it out on me. I should have walked away from the beginning when he said that he didn't like to diagnose sprue because the diet was too limiting.

Sounds like he was on the wrong end of the scope that day!!! You have it all correct....it was too soon for a gluten challenge, and if he didn't check Immunoglobulin A levels, you might have false negatives for the blood tests. Big chip on a lot of their shoulders and it makes no sense at all......if I ever get enlightened from one who's worth a crap, I'll let youall in on it.

Sorry......in a mood unfit for human consumption today........

[hathor]

How can it be a cult if we are afraid of drinking the Kool Aid

I really appreciate how these guys just knew that the prevalence of celiac is different from that indicated by study, statistics in countries where regular testing takes place, etc.

[silly celiac]

Dang Kool-Aid...

It upsets me to hear that there is so much ignorance out there, but as one who is turning a corner in my gluten-free journey (i.e. not worrying about what the Kool-Aid doctor told me, and just listening to my body which says DON'T YOU DARE EAT GLUTEN!!!), somehow it is amost reassuring to know that I didn't get a referral to the only you-know-what out there. I cried like a little girl when he told me to "go have some pizza for lunch"!!!

One of these days, our place in the world will be known and respected.

[jerseyangel]

One of these days, our place in the world will be known and respected.

Amen to that!

[happygirl]

The sad thing is that this doesn't surprise me anymore.

The dr. at NIH told me they don't like to diagnose people with it because the diet is "too hard."

[little d]

Ok, I think I can write about it now without popping my cork.

Went to a medical meeting last week about constipation, and asked what I thought was a reasonable question about the incidence of celiac disease presenting as constipation in his practice. He asked if the audience believed the incidence in the population was as reported, and too many of them(mostly GI's in the room) said no.....it was more rare than 1 in 133! He's even a native Australian!!!! The speaker said "everyone now thinks they have a 'touch' of sprue" and that it has built up into cult status!! I felt like I needed to be physically restrained !! I carefully took note of the ones nodding their heads to Dr R. McCallum's opinions. He is at the University of Kansas, and is a dept chair for GI motility. I basically decided to "behave".....I can learn more about them and their attitiudes if I keep my cool. But I wanted my "cult" friends to know!!!!!!!!!!!

Ann,

Did it make you mad enough to start that "Cult" Clinic. I will be first in line.

If this is what it feels like to be in a cult then I should have joined years ago,

and I want to be second in line behind Mamma Goose

Yes I think that would have made me mad sitting there hearing what he had to say.

donna

[oceangirl]

The next time a doctor implies celiac or gluten intolerance is a "cult" or "all in your head" perhaps someone could gently ask such a doctor how long it would take after holding his (most likely) hand on a hot burner before he knew he felt pain. Or how many times he would need to run his hand through a wood chipper before he decided it wasn't such a good idea. Or after his child was run over by a car how he would quantify the evidence of his broken heart?

I need a doctor near Portland, Me. who understands positive bloodwork and I haven't found one. "Hypocritic" oath is perfect. First, ignore harm?

The truth is out there. Hang in there everyone!

lisa

[Canadian Karen]

Ann,

All I can say is that this guy most assuredly is in the proverbial pharmaceutical pocket!

Drug company ties pervasive among department heads at U.S. med schools, survey finds

By Lindsey Tanner, AP Medical Writer | October 16, 2007

CHICAGO --Nearly two-thirds of academic leaders surveyed at U.S. medical schools and teaching hospitals have financial ties to industry, illustrating how pervasive these relationships have become, researchers say.

Serving as paid consultants or accepting industry money for free meals and drinks were among the most common practices reported by the heads of academic departments.

Drug companies and makers of medical devices often use these connections to influence doctors to use products that aren't necessarily in the patient's best interest, said Eric Campbell, the study's lead author. He is a researcher at Massachusetts General Hospital and Harvard Medical School.

Since academic department heads set the tone for appropriate conduct at their institutions, their actions signal to medical students and others that this is appropriate behavior, Campbell said.

The survey went to all 125 accredited medical schools and the nation's 15 largest teaching hospitals. About two-thirds of the department heads responded. The study gave no specific examples, nor did it name any institutions.

Many studies have examined doctor ties to drug companies. Campbell co-authored research last year that found company ties were common among hospital review boards that oversee experiments on patients.

The new study shows that drug companies "are involved in every aspect of medical care," Campbell said.

Overall, 60 percent of department heads reported some type of personal financial relationship with industry. More than one-quarter -- 27 percent -- said they had recently served as a paid consultant. The same percentage reported serving on a company scientific advisory board; and 21 percent who headed departments of medical specialties closely related to patient care said they had served on speakers' bureaus for industry.

The results appear in Wednesday's Journal of the American Medical Association.

Alan Goldhammer of the industry group, Pharmaceutical Research and Manufacturers of America, said the study results don't mean these relationships are a problem. He said it makes sense to reach out to academic heads because they have the most expertise.

But Dr. Jerome Kassirer, a former New England Journal of Medicine editor and frequent critic of industry influence over doctors, called the study eye-opening.

"I was appalled by the results," Kassirer said. "No one knew that so many chairs of medicine and psychiatry were paid speakers. We've never had that data before."

He noted that financial ties can benefit patients when they are related to research or other scientific purposes that increase doctors' education or lead to the development of better drugs or medical products.

But they are dangerous when doctors are so beholden to the company that they withhold safety concerns or push the newest or most expensive products when they aren't necessarily best for the patient, Kassirer said.

The researchers sent surveys last year to 688 department heads at all 125 accredited U.S. medical schools and the 15 largest teaching hospitals. A total of 459 people responded, or 67 percent. Included were departments closely related to patient care, such as surgery or anesthesiology, and "nonclinical" departments more closely related to basic science.

Among those in charge of departments related to patient care, 65 percent said their departments had recently accepted industry money for continuing medical education; half reported recently getting industry money for food or drinks; 30 percent reported getting money for travel and meetings.

Overall, 67 percent said their departments had received some type industry money.

Fewer than 10 percent of chairs with personal financial relationships said those ties had any negative effects.

Dr. David Korn, a senior vice president at the Association of American Medical Colleges, which helped conduct the study, said the results aren't surprising or necessarily cause for concern.

Medical schools generally have policies governing relationships with industry to "make sure that they remained principled," Korn said.

"There is a real need to have good exchanges of information" between medical schools and industry, Korn said. "After all, when a new product is approved," the maker "knows about it better than anyone else."

Still, "gifting and favoring" are problematic, he said, and an association task force is examining the issue.

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