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How Do We Get The Word Out To The Doctors?


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68 replies to this topic

#46 Judyin Philly

 
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Posted 03 February 2006 - 09:17 AM

FRIENDLY REMINDER:

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

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

Hugs.
Karen


OMG Karen,

Are you kidding me..I thought that was if you were allergic to corn...
I'm getting off line...this just 'tipped me over the edge'
Judy
  • 0
Judy in Southern CA

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#47 Canadian Karen

 
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Posted 03 February 2006 - 09:20 AM

Unfortunately, sometimes there is still gluten in the glue they use on envelopes, stamps, etc. <_< Better safe than sorry! :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

#48 floridanative

 
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Posted 03 February 2006 - 09:29 AM

Oh my gosh!! Now I have to go through my desk and find that little bottle made for wetting envelopes...ummm....okay here it is. Only my invoice envelopes are not self stick. That gluten is a trickster indeed.

Karen - thanks for telling about my folders. I have cleaned them out now.
  • 0
Dx'd with anemia - March 2005
Positive blood tests - Sept. 2005
Positive biopsy - Jan. 2006
Gluten free since 1-23-06

#49 celiac3270

 
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Posted 03 February 2006 - 11:12 AM

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


Well, about a catchy letterhead phrase, Dr. Green's new book is called Celiac Disease: A Hidden Epidemic. So as long as it's not in violation of some copyright/trademark law to use that phrase, that would be a good one.

There are basically three levels for increasing awareness among physicians:

1) Doctors themselves -- pretty ineffective, but it's wonderful when you find a GI who puts celiac at the top of the list in testing (such as the one who dx'd me--didn't belong to any celiac centers, but celiac's one of the first things he tests for).

2) Insurance -- it's been discussed extensively, so I have little to add there.

3) Pharmeceutical Industry -- even though few of us would actually take a pill for celiac, there are HUGE awareness benefits if one is made and FDA approved. You would get advertisements, and the pharmeceutical industry, which contributes to a lot of medical education, would make sure doctors knew about celiac, so money could be made off of people taking expensive pills every day. This area is really out of our control, though, unless anyone wants to set up a lab and make the pill :lol: .
  • 0

#50 Canadian Karen

 
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Posted 03 February 2006 - 11:34 AM

My point of view from the pharmaceutical standpoint is that they would not want to help in any way to get Celiac Disease diagnosed, nor would it be in their best interest to sink money into any type of research for a "magic pill" to deglutenize us or to allow us to eat gluten.

The money the pharmaceutical companies would make on a pill for us to take would be a drop in the bucket compared to all the money they make due to celiac complications. If we are diagnosed earlier, thereby avoiding all the complications of years of misdiagnosis (i.e. diabetes, depression, thyroid problems, meds for osteoporosis,etc. etc. etc.) the money they would lose due to lack of all these complications would outweigh the money they would make for one pill (unless they charged an exorbitant amount for it).

I think the more celiac disease is diagnosed properly and promptly, the more ticked off the pharmaceutical companies would become.......

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

#51 Rusla

 
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Posted 03 February 2006 - 12:18 PM

Even though for many the blood test works but then, there are others where the blood test shows negative and you have to go through the other tests. I fear giving the insurance companies the idea that all it takes is a blood test, would cause them to freak out when biopsies rear their heads.

Not only that but many may run into the same thing I did with my former doctor. He not only did not know what the blood test was called but the fact that you need to be on gluten for 3-6 months prior to the test.

I think it would be best to say, "there are two to three tests that can be done to determine this disease and both are fairly inexpensive in regards to the alternatives” Then, alluding to the out come if it is not diagnosed in time and what the costs monetary and health wise could result from ignoring this disease.

In view of the pharmaceutical companies being upset over losing money, so would the government. The government gets a huge kickback from pharmaceutical companies. That is why the government has been trying to block natural remedies.
  • 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.

#52 debmidge

 
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Posted 04 February 2006 - 04:28 AM

I think that another thing that complicates this issue, and I don't know how one would get around this, is that unless the doctor has reason to suspect celiac, he cannot order a blood test to detect it (meaning insurance won't pay for a blood test when there's no reason to suspect a certain disease). This is why years ago a mammogram wasn't covered unless there was a known breast disease, thankfully, that has been changed.

So again, the blood testing request stems from the physician.
  • 0
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

#53 Canadian Karen

 
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Posted 04 February 2006 - 06:19 AM

I think that another thing that complicates this issue, and I don't know how one would get around this, is that unless the doctor has reason to suspect celiac, he cannot order a blood test to detect it (meaning insurance won't pay for a blood test when there's no reason to suspect a certain disease). This is why years ago a mammogram wasn't covered unless there was a known breast disease, thankfully, that has been changed.

So again, the blood testing request stems from the physician.


I know, thank God that has changed, and mammograms are now recognized as a valid screening method to catch it early. That's why I am hoping that eventually, with enough pressure on the insurance industry, THEY will be the ones demanding doctors screen for celiac disease in the same manner.

I am the first one the admit I have absolutely no idea how the medical system works in the States, all this talk about HMO's and no coverage etc. is totally foreign to me. But even up here in Canada, with a Universal Health Care system that is protected and is the right of every Canadian, the insurance industry still has alot of clout up here. If we can make them realize that some kind of screening system would be finanically beneficial to them, we could really catch so many cases that are going undiagnosed way longer than they should.

I think it is too much to expect them to have a screening system in place where EVERYONE is screened (like in Italy, I believe), but if someone goes to their doctor complaining of symptoms consistent with celiac complications, then those are the ones who should have the test run.

I got the impression that in the States, the insurance companies basically have "their" doctors, meaning doctors that work for them. If that is the case, then if the insurance industry devises a list of symptoms for possible celiac and then direct their doctors accordingly, that is to say, "If any of your patients present with these symptoms, please run a celiac panel on them to rule out celiac disease". Once they realize that the benefits of this screening could save them a staggering amount of money, I think we would be that much further to chipping into the tip of the iceberg.

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

#54 Rusla

 
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Posted 04 February 2006 - 07:30 AM

However, in Alberta the fearsome US health care system is looming on our horizon thanks to our drunken, moronic Prime Rear.
  • 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.

#55 debmidge

 
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Posted 05 February 2006 - 06:09 AM

what's a Prime Rear?
  • 0
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

#56 Rachel--24

 
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Posted 05 February 2006 - 06:32 AM

what's a Prime Rear?


LOL....I wanted to ask the same thing.
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Rachel

#57 debmidge

 
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Posted 05 February 2006 - 07:04 AM

Should I wish I had one? Sure beats having fat one.
  • 0
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

#58 Rusla

 
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Posted 05 February 2006 - 07:47 AM

Well they actually call the loser the Premier of the Province, but he is a Prime Rear and he has a fat drunken butt too.
  • 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.

#59 Canadian Karen

 
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Posted 05 February 2006 - 08:17 AM

I bet he's hoping those properity cheques will wipe everyone's memory clean! He can't be any worse than Dalton the Dolt! LOL!

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

#60 ianm

 
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Posted 05 February 2006 - 08:19 AM

I just love reading about how messed up Canadian politics are. Liberals in America talk about Canada as if it is some type of Socialist Utopian Paradise. I should have some of the liberals I know read this forum.
  • 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.




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