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How Do We Get The Word Out To The Doctors?


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#31 Canadian Karen

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Posted 02 February 2006 - 06:40 AM

Here is a draft of a letter to go out to Celiac Associations in your area:

CELIAC ASSOCIATION OF…………..




To Whom it may Concern:

My name is Karen (last name) and I have had celiac disease for many years although not properly diagnosed until 4 years ago. Unfortunately, my long road to proper diagnosis is all too familiar. I am part of a group of fellow celiacs who are earnestly trying to change that.

I am involved in a campaign to send out letters to insurance company representatives, requesting them to attend a Celiac Disease Conference in their area. It is our hope that once the insurance industry is properly educated about celiac disease and its financial implications of this disease not being properly diagnosed in a timely manner, they will take action to rectify this problem. We feel that if the insurance industry discovered how much money is wasted on medical tests, hospitalizations, lost work hours and disability claims, just because the medical establishment is woefully uneducated about this disease, that they will take action and start realizing that by just one simple blood test, a staggering amount of money could be saved. Not only would they benefit financially, but all those currently who have celiac disease and still have not been properly diagnosed just might have a chance to finally have the answer they have been searching many years for.

Please assist us in this endeavor by extending an invitation to insurance representatives in your area in an effort to educate them about this disease. They could become one of our most powerful advocates and if we secure their involvement in educating the medical establishment, we have gained a very powerful ally in our fight against this disease.

Attached you will find a copy of the letter that has been sent out en mass to insurance companies in an attempt to secure their involvement and assistance.

Thank you for your kind consideration.

Yours truly,



Your name……..


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

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#32 Judyin Philly

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Posted 02 February 2006 - 07:50 AM

Here is a draft of a letter to go out to Celiac Associations in your area:
Hugs.
Karen


Fantastic Job Karen,
thanks so much
Will use with the support group too.
I can't thank u enough for taking the time and EFFORT to this for us.
Judy in Philly :)
  • 0
Judy in Southern CA

#33 Rusla

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Posted 02 February 2006 - 07:56 AM

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


I think also mentioning thryoid disease, Graves and Hashimoto's.

Saying something to the effect: Many people who are diagnosed with Graves, Hashimotos, Diabetes, Colitis,Fibromyalgia and Chronic Fatique to mention a few may also have Celiac disease.

Just a thought.
  • 0
Rusla

Asthma-1969
wheat/ dairy allergies, lactose/casein intolerance-1980
Multiple food, environmental allergies
allergic to all antibiotics except sulpha
Rheumitoid arthritis,Migraine headaches,TMJ- 1975
fibromyalgia-1995
egg allergy-1997
msg allergy,gall bladder surgery-1972
Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease
gluten-free totally since Nov. 28, 2005
Hashimoto's Hypothyroidism- 2005
Pernicious Anemia 1999 (still anemic on and off.)
Osteoporosis Aug. 2006


Creative people need maids.

#34 Canadian Karen

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Posted 02 February 2006 - 08:09 AM

I think also mentioning thryoid disease, Graves and Hashimoto's.

Saying something to the effect: Many people who are diagnosed with Graves, Hashimotos, Diabetes, Colitis,Fibromyalgia and Chronic Fatique to mention a few may also have Celiac disease.

Just a thought.


Excellent thought, Rusla!

That's why I wanted this to be a brainstorming session!

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

#35 Rusla

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Posted 02 February 2006 - 10:41 AM

My brain is feeling very stormy lately. :lol:
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Rusla

Asthma-1969
wheat/ dairy allergies, lactose/casein intolerance-1980
Multiple food, environmental allergies
allergic to all antibiotics except sulpha
Rheumitoid arthritis,Migraine headaches,TMJ- 1975
fibromyalgia-1995
egg allergy-1997
msg allergy,gall bladder surgery-1972
Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease
gluten-free totally since Nov. 28, 2005
Hashimoto's Hypothyroidism- 2005
Pernicious Anemia 1999 (still anemic on and off.)
Osteoporosis Aug. 2006


Creative people need maids.

#36 Judyin Philly

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Posted 02 February 2006 - 02:23 PM

Excellent thought, Rusla!

That's why I wanted this to be a brainstorming session!

Hugs.
Karen


Yes, Karen, totally agree..THANKS
JUDY
  • 0
Judy in Southern CA

#37 Jen H

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Posted 02 February 2006 - 04:15 PM

Berneses, I think you bring up a really good point. Teachers have a certain amount of professional development that must be completed in order to be recertified. I know doctors have to pass the medical boards and that some move on to fellowships and specialties, but shouldn't they have professional development opportunites as well?

Just recently I visited my rheumatologist and she cited various studies on the relationship between arthritis and celiac disease. It was pretty clear that she found it interesting and that she had done research in the area. I thought she was a wonderful doctor because her statements were all scientifically based. I've been to several internists who have also said that "celiac disease is rare". It's pretty ironic that many people who have it have yet to be diagnosed.

By the way, Canadian Karen, I think the letter you wrote is wonderful and will definitely inform insurance companies about the amount of money that is wasted in trying to diagnose celiac disease.
  • 0

#38 Judyin Philly

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Posted 02 February 2006 - 05:38 PM

[quote name='Jen H' date='Feb 2 2006, 07:15 PM' post='98484']
Berneses, I think you bring up a really good point. Teachers have a certain amount of professional development that must be completed in order to be recertified. I know doctors have to pass the medical boards and that some move on to fellowships and specialties, but shouldn't they have professional development opportunites as well?

quote]

Bernese and Jen H
HI, I worked in a medical library for 15 years and part of my resp was to help get tapes, videos etc in the library for CME credits (continuning Medical Education) at least at my hosptial, this was a must. I know if they didn't complete X amount of credits, they'd lose their privilages (or maybe even to keep license valid). I was a serious item. I know when i was bringing them in..I must say i was researching IBS at the time and always looked at the videos or listened to the tapes and I didnt' think alot was a up to date as the technical info I'd get them in searches.. but did give basic info ....So answer your question..I think, in my experience the answer is yes they do have to get extra medical info to keep their license up to date and many go to the big confrences and get credits for that..how good are the in house certifications...I have my doubts on that one. I thought there was some one on the forum who was a dr and one a nurse married to a dr . (if i recall correctly) maybe they can add lite on this issue.
Judy in Philly
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Judy in Southern CA

#39 Rusla

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Posted 02 February 2006 - 05:58 PM

It would be very useful if we could get some corporate sponsorship of some type. Which could get Celiac Associations to get on board with this and send out information packets to schools, companies, restaurants etc. This is also where the Oprah thing would have helped.

Celiac Disease...You or someone you love could have it.

Or something like that.
  • 0
Rusla

Asthma-1969
wheat/ dairy allergies, lactose/casein intolerance-1980
Multiple food, environmental allergies
allergic to all antibiotics except sulpha
Rheumitoid arthritis,Migraine headaches,TMJ- 1975
fibromyalgia-1995
egg allergy-1997
msg allergy,gall bladder surgery-1972
Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease
gluten-free totally since Nov. 28, 2005
Hashimoto's Hypothyroidism- 2005
Pernicious Anemia 1999 (still anemic on and off.)
Osteoporosis Aug. 2006


Creative people need maids.

#40 Canadian Karen

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Posted 02 February 2006 - 09:42 PM

If we can get their attention (the insurance industry), make them see how much money is wasted by not screening for celiac disease with a blood test, the absolute clincher to hammer it home how beneficial for them it would be THE TREATMENT!!!! DIET!!! NO MEDICATIONS!!!! There isn't even a pill to take every day for them to have to worry about paying for!!!!! WHAT MORE COULD THEY WANT?????

Once it's laid out for them, they would have to have pretty thick skulls to not figure out how it would benefit them.......

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

#41 floridanative

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Posted 03 February 2006 - 06:04 AM

I really want to get my letter out to BC/BS next week but I realized I'm not sure where to send it in forms of correct address or dept. My ins. card has only the billing address on it. Since they routinely record phone calls I'm not sure I want to bring attn. to myself right now since I have a postive biopsy as a matter of record and my husbands company is being purchased by another company next month. We have no idea how this will affect our insurance but I can't afford to lose my coverage so I was going to send my letter anonymously. Does anyone know how to look up the major ins. companies addresses or more importantly the address where you would send such a letter? Is it public relations or quality control or what?
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Dx'd with anemia - March 2005
Positive blood tests - Sept. 2005
Positive biopsy - Jan. 2006
Gluten free since 1-23-06

#42 Canadian Karen

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Posted 03 February 2006 - 06:08 AM

I really want to get my letter out to BC/BS next week but I realized I'm not sure where to send it in forms of correct address or dept. My ins. card has only the billing address on it. Since they routinely record phone calls I'm not sure I want to bring attn. to myself right now since I have a postive biopsy as a matter of record and my husbands company is being purchased by another company next month. We have no idea how this will affect our insurance but I can't afford to lose my coverage so I was going to send my letter anonymously. Does anyone know how to look up the major ins. companies addresses or more importantly the address where you would send such a letter? Is it public relations or quality control or what?


Don't in any way, shape or form jeopardize your own insurance, that's wayyyyy too important. Send it anonymously, or put my name on it, you can e-mail me and I will give you the info to put on the letter.

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

#43 Judyin Philly

Judyin Philly

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Posted 03 February 2006 - 08:01 AM

I really want to get my letter out to BC/BS next week but I realized I'm not sure where to send it in forms of correct address or dept. My ins. card has only the billing address on it. Since they routinely record phone calls I'm not sure I want to bring attn. to myself right now since I have a postive biopsy as a matter of record and my husbands company is being purchased by another company next month. We have no idea how this will affect our insurance but I can't afford to lose my coverage so I was going to send my letter anonymously. Does anyone know how to look up the major ins. companies addresses or more importantly the address where you would send such a letter? Is it public relations or quality control or what?


Hi FN
You know this is so sad...This is a real issue...it just seems we are always trying to 'protect' ourselves' :blink:
It's nice Karen offered her name. Agree, you must protect your self.
Right now I'm trying to get my CPAP to work. I'm so sleep deprived ... & foggy..to all you who think I can't spell (well even on a good day I can't spee) but that's another issure..or my messages sometimes are abrupt or words left out..... :o Please forgive me and don't take anything personally if it reads wrong' I'm really doing the best I can and all posts so far have been positive even if it read neg. as i saw in a old post yesterday... :ph34r:
Please let me know i fugured out B/C B/S= Blue cross blue shield...god it's a new day with new brain cells restoring themselves i guess.
Judy in philly
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Judy in Southern CA

#44 Canadian Karen

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Posted 03 February 2006 - 08:33 AM

Hey floridanative, your PM is full...... I tried to PM you....

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

#45 Canadian Karen

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Posted 03 February 2006 - 08:57 AM

FRIENDLY REMINDER:

To anyone sending out the letters........

DON'T LICK THE ENVELOPES!!!!! :P

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


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