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floridanative

How Do We Get The Word Out To The Doctors?

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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.


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.

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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.


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 2006It 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

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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


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


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.

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what's a Prime Rear?


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 2006It 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

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what's a Prime Rear?

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


Rachel

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


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 2006It 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

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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.


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.

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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


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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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.


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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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.

HAH! Two words: Sponsorship Scandal. It just knocked the Liberal Party off its pedestal......

Karen


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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Ian--I was just thinking the same thing :D


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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I know that right now, especially being a two parent, four children family, I sure as heck wished I lived in Alberta right now!!!! LOL!

Here why:

http://www.cbc.ca/calgary/story/cheques20060130.html?ref=rss

Rusla, I will go on a shopping spree vicariously through you, okay? :P

Hugs.

Karen


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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You are too late, it floated right out of my hands all $400. You need to spend someone who has a larger families money. However, it seems in all the brilliance of our esteemed Prime Rear that they have sent ones to many across the country who have never lived in Alberta so, you could still get one.

In our utopian paradise I sat with my mother in the emergency ward of the hospital for 12 hours and no one even looked at her. She was brought in by ambulance. They were pulling people off of gurneys and putting them in wheelchairs, pushing them into the waiting room and saying, "tell us when you are sick." People were passing out in line and laying on the floor of waiting room...sick.

Karen, he can be worse. In a rapidly growing city, where I live, he refurbished a hospital for 70 million and sold it for 3 million to a private company and blew up the other one. We have 3 hospitals, none inner city in a city of over a million people. But hey, Mr. Wonderful says we will have 2000 more beds in the year 2010, some good it does now.


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.

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Wow! How inept! Maybe I'll stay here in Ontario after all..... :P;)

And here I was having a wonderful daydream how I would spend $2,400.00!!! That would buy a LOT of gluten-free stuff!!!

Hugs!

Karen


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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If he sends you $2400. you can send me $1000. Admit it Karen you would take a trip and run away from the four kids and husband for awhile.


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.

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

LMAO!!

I wish I had one...sure beats having nothing at all!!

Kinda hurts to sit down. :lol:


Rachel

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However, insurance companies would rather no one have any problems or know about this, that way they don't have to put out the bucks, just sit back and rake in the cash.

It is hard to educate doctors when many in their minds think such things as Celiac, hypoglycemia and other medical issues don't exist and are bunk. First one has to get the doctors to listen that, in itself is a chore.

First, I know I am late, I had to do research to learn what foods I could eat as I was getting really tired on fruits and bananas.

Being adopted in the 70's we didn't know my family history and at age 17 I started having siezures and bouts with passing out or browning out. Yes, the initial doctors told my I was a mental case looking to be sick when all I had was passing out or browning out. Until the siezures happened and I was placed in the hospital. While at the time they came to the conclusion that there was no cause for my siezures and that they were an "isolated" case that should never trouble me, they did make me drink that sicky sweet orange beverage and performed the dreaded 6-hour sugar test to see if I was diabetic. My sugar levels spiked the first hour, went through the floor the second hour and I started passing out hours 2.5-4. At that point they realized the passing/browning outs were not in my head as they had told me for years and did more tests. Thats when they discovered that my pancreas was an over active devil that jumped into war when I ate sugar. If it were not for the test results to waggle in the rest of the "thats bunk" doctors faces, I am sure that many of them wouldn't believe me as most of them didn't until I produced the test results.

As a side note, I sent a letter to my insurance company, with the assistance of my GP in tracking what they have paid out in the past 15 years that was directly a result of Celiac Disease. By monday (one week after being diagnosed) he called me to tell me the insurance company was very concerned (he is a physician owned by the insurance company) and wanted to know if he was treating similar patients who might need a simple blood test and scope so that they could get to the bottom of it.

He provided them with may of their insured patients names and encourage them to form a review board to look over his other patients records and encourage the doctor who dx'd me to be made part of that board. So for now, I have one insurance companies ear who are being very pro-active towards their bottom line -- their profits! Between my doctor, the records and every thing else, they have gone back and have assigned a wasted $375,000 price to the savings they could have realized with me if I had been diagnosed with this just 15 years ago. I wonder how much could have been saved if I went back to the time I was 5 and started the tally from that point.

No doubt their board will have some strict guidelines as to who and why people are tested for Celiac, but at least they are looking into it. They have opted for a 12 party board which will include 50% physicians and 50% administrators.

Insurance companies do care, but only when you bend the correct ear, in the case of the high cost of mis diagnosis of Celiac, it was an economic ear and they are eagar to save more of their precious profit margin.


Diagnosed January 2006 after a 35 year battle.

Interested in a Gluten-Free Cruise symposium style? Visit the following link to give your input:

Gluten Free Cruise vacation and lecture series idea

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celiac3270 -- comment about

"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 ."

--------------------

celiac3270 is bright beyond his years. I wish he was a doctor. I would be his patient, he had helped so many of us.

I think he's right. I also think we need to some how get to the Pharmeceutical Industry and perhaps they will listen to the drug reps that pay them a visit and give them free whatever... Maybe we could work on sending letters to the drug industry and jamming their mail boxes. Think of this one for a quick minute -- if you look at illnesses, the nation spend the most $ , not on cancer, diabetis, heart problems, the #1 thing is digestive disorders... It might make sense to focus on bringing to their attention celiac disease?

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