Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

How Do We Get The Word Out To The Doctors?


  • Please log in to reply

68 replies to this topic

#16 Rachel--24

 
Rachel--24

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 9,323 posts
 

Posted 01 February 2006 - 02:36 PM

I think these are all great ideas but I think its more of a problem with doctors having too much on their plates. The doctors ARE aware of Celiac....they're just not testing for it. My doctor was aware of it....he told me it was on their top 10 list. Top 10 diseases that they are misdiagnosing. Even with that knowledge he never mentioned it to me once. People with Celiac usually have multiple symptoms and they are not always GI symptoms. The doctors simply dont have time to figure it out. They run some tests and when they cant come up with anything they just treat the symptoms. Thats the way it works. They are under too much pressure and are nearly always behind schedule. My OBGYN told me the physicians often get depression and take antidepressants because they have too much stress from having to fit a certain amount of patients into one workday. How can they truelly help anyone in the amount of time they're given with each patient? I think something should be done about that. If the doctors werent under so much stress they might be capable of actually helping people because they would have the time to *listen*.
  • 0
Rachel

Celiac.com Sponsor:

#17 Canadian Karen

 
Canadian Karen

    That Crazy Canuck!

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,554 posts
 

Posted 01 February 2006 - 02:43 PM

But if the doctors are "owned" by the insurance companies, and the insurance companies order them to start testing for this more, then they would have no choice..... I really think the insurance company angle is the best way to tackle this. If we can get them to understand how much of their money is "flushed down the toilet" (pardon the pun) due to this blood test not being done, they would crack down on "their" doctors and start getting this disease diagnosed alot sooner.

Logically, insurance companies make their money by charging the premiums that they do. They lose money by all the medical payouts they have to make. I would think they would jump at the change to reduce the latter.

For further incentive on our part: Insurance company involvement = doctors testing more for celiac = more celiacs being diagnosed = more gluten free food in demand = better selection and cheaper prices.

Karen
  • 0
Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#18 Rachel--24

 
Rachel--24

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 9,323 posts
 

Posted 01 February 2006 - 02:52 PM

For further incentive on our part: Insurance company involvement = doctors testing more for celiac = more celiacs being diagnosed = more gluten free food in demand = better selection and cheaper prices.



I'm all for it!
Will write a letter....this would be more beneficial than getting on Oprah. Its not gonna do any good for a bunch of people to identify with Celiac if the doctors arent going to do their part in recognizing symptoms and ordering the proper tests.
  • 0
Rachel

#19 Canadian Karen

 
Canadian Karen

    That Crazy Canuck!

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,554 posts
 

Posted 01 February 2006 - 03:00 PM

I plan on sending this letter out to as many insurance companies and Canadian Celiac Disease Association brances as possible......

Even if it is just a little, tiny, nudge towards better diagnosis, it's better than doing nothing......

Karen
  • 0
Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#20 Lisa

 
Lisa

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,802 posts
 

Posted 01 February 2006 - 03:07 PM

I agree with Karen. I DO remember when insurance companies did not pay for routine mamagrams. That denial could have save the companies billions of money in post dig. for breast cancer and where that may lead to.

Slamming the Health Insurance Association with information from us would/could lead to alot of change. They are the ones that lobby Congress and that is where things will change. (Karen, don't know how Canada deals with this) We all need to be lobbiest. I am sure that the Celiac Sprue Accociation is doing a good job. We can contact them and see where we can help with this issue. We DO have our own lobby group. I have joined the CSA and would suggest that others do and see where we can help. Contacting our local Congressional Legislature would also be helpful. I do think you need to go to the top. Hey, we as citizens have given rights to be represented and our concern heard.

Lisa
  • 0
Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#21 Canadian Karen

 
Canadian Karen

    That Crazy Canuck!

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,554 posts
 

Posted 01 February 2006 - 03:27 PM

After re-reading the letter (told ya it's a draft!!), I think it is very important to mention diabetes as a symptom, since that is a very mainstream complication that has been getting lots of attention lately.....

Any thoughts?

Karen
  • 0
Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#22 floridanative

 
floridanative

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,199 posts
 

Posted 01 February 2006 - 03:31 PM

I'm all for it!
Will write a letter....this would be more beneficial than getting on Oprah. Its not gonna do any good for a bunch of people to identify with Celiac if the doctors arent going to do their part in recognizing symptoms and ordering the proper tests.


Eactly Rachel! That's why I started this post. Like I said before, if everyone who could have Celiac went in to ask to get tested and the docs were the same as mine and more importantly like the rest of your docs...well then all the publicity in the world wouldn't benefit anyone. My GI told me flat out I couldn't have it and well...he was very wrong in the end.

I'd like to nominate Karen for 'smartest Celiac of the week' for her brilliant idea/letter to the insurance companies. Can I get someone to second that??!
  • 0
Dx'd with anemia - March 2005
Positive blood tests - Sept. 2005
Positive biopsy - Jan. 2006
Gluten free since 1-23-06

#23 Lisa

 
Lisa

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 9,802 posts
 

Posted 01 February 2006 - 03:39 PM

Karen,

Your fishing trip is OVER!!!!!!!!! :D :D :D
  • 0
Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#24 Canadian Karen

 
Canadian Karen

    That Crazy Canuck!

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,554 posts
 

Posted 01 February 2006 - 03:41 PM

The lightbulb went off when I was reading Timber4est's post. I think she deserves the credit!

I am looking for my Print Artist Gold that has the software to make letterhead. I am going to make some letterhead for the letter to be sent out on. I am trying to think of a catchy letterhead phrase.

Like: Celiac Disease: Discovering the Poison

or

Celiac Disease - The Undiagnosed Culprit

or

(still thinking........) lol!

Karen
  • 0
Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#25 floridanative

 
floridanative

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,199 posts
 

Posted 01 February 2006 - 05:07 PM

I defer to Canadian Karen....I change my nomination to Timber4est as the 'smartest Celiac of the week'. I did not catch that first line above the guote Karen. I like your idea to put a name on the letterhead. I'm going to put that text really obnoxiously bold on the top and bottom of the page so whoever reads it
won't forget it.
  • 0
Dx'd with anemia - March 2005
Positive blood tests - Sept. 2005
Positive biopsy - Jan. 2006
Gluten free since 1-23-06

#26 4tomorrow

 
4tomorrow

    Community Member

  • Advanced Members
  • PipPipPip
  • 43 posts
 

Posted 01 February 2006 - 05:25 PM

I have a GI doc. appt tomorrow. She refered to the biopsy as the "gold standard" and mine was inconclusive. I printed out Dr. Fine's speech, but it's 8 pgs. Is there anything better for me to take to help her understand that I could just be gluten intolerant or not have been sick long enough?

Any info would be much appreciated.
  • 0

#27 Judyin Philly

 
Judyin Philly

    Moved to SO CA in November 2010

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,626 posts
 

Posted 01 February 2006 - 05:49 PM

Also, send a copy of this letter to your local Celiac Association branch, with an additional note asking them to please approach the insurance industry and extend an invitation to the next conference......

Karen


Gosh, Karen I'm glad your back...What a brilliant Idea and glad you put together such a great letter from the info you got from someone on the panel...
I'm going nuts here trying to pick out ideas from other postings and wanted to cut and paste the ideas on Karens page with the name beside it and can't get the job done...
There is just so many great ideas here I don't know where to start.
Ok
1. I'm making a copy of your letter and adding somewhere about the diabetes, fibromyalgia and obesity issue too.
2. Like the idea of printing the letter (however each person wants to personalize it) and taking to their support meetings and get their letters going too.
3. Someone on here said something about the drs...I know we need to get the info to them. was it Rachel who said one of her drs. said it was on the top 10 issues...I'm so mixed up now...but I'd like to send a letter to my dr and tell him the importance of early dx. I am not a WRITER so this isn't my talent..but if someone out there is...a letter on the line of Karen's would be great too.
4 Armetta had a great idea but can't remember what it was now...and can't see as I'm posting and scrolling where it ever is.

Since I'm starting a new job and have so much going on..I'll try to get this one letter out at least.
Good job everyone...These ideas are really fantastic.
Also...there's a new post by FN I think, saying GMA emailed her about putting the video up again.
Ask her to start a new thread so we can email them in mass and get it up again. then ...If it does go up.
I'm calling my dr of 25 years who never dx'd me. He was busy helping me deal with the tumors and rare bone disorder..... but was the one who finally did order the tests...I don't fit the 'skinny' profile....I'm fat but won't before ever....He's excited with my 35 # weight loss so maybe other obese folks and get them to listen...
have to get off...
Armetta...I'm so sorry about your eyes..I had the detached retina and it's a very SCAREY thing.
take care.
AGAIN...thanks so much Karen and so glad your back.
I second the motion..
Judy in Philly

ADD is rearing it's ugly head...and I'm tired
  • 0
Judy in Southern CA

#28 Canadian Karen

 
Canadian Karen

    That Crazy Canuck!

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,554 posts
 

Posted 01 February 2006 - 05:58 PM

I just got some information on the Canadian Celiac Association National Conference in 2006. The conference will be held in Toronto at the Renaissance Airport Hotel from May 26-28 2006 (Week-end). This is the info that I have so far:

Celiacs in the City
"Come and celebrate the Toronto Chapter's 25th Anniversary at the Canadian Celaic Association National Conference on May 26-28, 2006. Award winning chef James Piggott of the Renaissance Airport Hotel welcomes the opportunity to create menus of unprecedented flavour in the world of gluten-free dining for everyone to enjoy. Every plate will be a work of art. Don't miss the feast! Hear Canadian and international reseach experts on the latest developments in Celiac Disease research, diagnosis and treatment. Meet exhibitors and sample their new and delicious gluten-free products".
More info can be found here: http://www.torontoceliac.org/home.html
or at this # National Office 1-800-363-7296

I am planning on going and I will post more info once I get it :D


I plan on contacting the Toronto Chapter regarding their 25th Anniversary and the Canadian Celiac Association regarding their National Conference to ask them to extend invitations to insurance company representatives. I will also send them copies of my letter. I am hoping this Conference will be a catalyst for our plan and will start to put things in motion (from a Canadian standpoint).......

Hugs.
Karen
  • 0
Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#29 Judyin Philly

 
Judyin Philly

    Moved to SO CA in November 2010

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,626 posts
 

Posted 01 February 2006 - 06:09 PM

Karen,
Gosh I'd love to go to a conference.
Have you ever been to one?
This above Idea was great too.
your on a roll girl :rolleyes:
Judy
PS I tried to print the thread...i hit the quote on the first post and usually the thread will print but now the ends of the sentences are not there...page isn't wide enought.
Any Ideas on how i can do this print.'
j
  • 0
Judy in Southern CA

#30 ianm

 
ianm

    Metal God

  • Advanced Members
  • PipPipPipPipPipPip
  • 849 posts
 

Posted 01 February 2006 - 06:13 PM

Karen, your fishing trip is oficially over. We're lost without you.

Pressuring the insurance companies is the best way to go. The reason that doctors won't test for or acknowledge celiac is because the INSURANCE COMPANIES are forcing them to limit patient visits to 10-15 minutes, write a prescription(s) and send them out the door. If we can convince insurance companies that celiac testing is the cheapest, easiest way for them to save biliions then they will have no choice but to listen. The drug companies will hate us but screw them.
  • 0
If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: