I too have felt in my past that I was banging my head against the wall trying to get sombody, ANYBODY, in the medical profession to take me seriously. It astounds me the number of people I know who have celiac have been accused of being hypochondriacs, emotionally unstable and in need of physciatric treatment. I guess I am only human, because when it was finally discovered and proven beyond a shadow of a doubt that not only did I have celiac disease, but collagenous colitis, I felt in some way vindicated..... It was just infathomable for some doctors to believe someone could have permanent watery diarrhea for over a decade and still be alive.
I too have tried to be an activist, sort of. I will explain to you my theory.
The medical establishment in general seems to be years behind in learning about celiac disease. Even my own family doctor has admitted that the only thing they really learned in med school about celiac disease is to look for it in children failing to thrive and distended bellies. Now I am aware that the medical system in the U.S. is vastly different than that in Canada (Universal care), but I believe my theory fits both countries.
I think the key to getting the word out and getting doctors to realize how important it is to have celiac disease on their radar screens when someone comes in with even just a few minor symptoms, IS THROUGH THE INSURANCE COMPANIES! It is my belief that they are the ones who ultimately can dictate what tests can be more standardized based on the fact that they would be the ones approving whether or not the test would be financially covered. If we can make them see how much money would be saved in the long run just by running some bloodwork early when symptoms first present themselves, ultimately they will save a lot more money by not having to fork out money for a vasy myriad of testing, medications, disability payments, etc. etc. If they nip it in the bud early, then the complications (thyroid disease, osteoporosis, osteoartritis, or any additional auto-immune disease) would not even have a chance to develop.
I had written a letter that I had sent to many insurance companies up here in Canada. I have no idea whether it will open their eyes or not, but as long as I know in my heart I tried, then I can feel comfortable knowing that I have done my part in trying to change the current situation......
Here is a copy of the letter:
INSURANCE COMPANY
ATTN: DISABILITY CLAIMS DEPT.
To Whom it May Concern:
I am attempting to spearhead a campaign to raise awareness of Celiac Disease and its negative impact not only to hundreds of thousands of undiagnosed celiacs, but the financial impact this insidious disease has on your particular industry.
Celiac disease, also known as gluten intolerance, is a genetic autoimmune disease that affects 1 in 133 North Americans. Symptoms of celiac disease can range from the classic features, such as diarrhea, weight loss, depression, osteoporisis, peripheral nervous system disease and malnutrition, to latent symptoms such as isolated nutrient deficiencies, but no gastrointestinal symptoms. In fact, celiac disease can manifest itself in any one of 200 various symptoms.
The medical establishment is woefully uneducated about this disease. In fact, Celiac Disease is listed as one of the most underdiagnosed diseases in North America. The average timeframe from onset of symptoms to final proper diagnosis is 11 years. That is 11 years of endless medical tests, hospitalizations, medications, lost work hours and disability claims. It is that important fact that I truly believe is of great importance to your industry and hopefully will spur you into action to start educating doctors about this disease in an effort to have this disease properly diagnosed at the onset of symptoms. This could save your industry countless dollars in unnecessary medical costs. This disease can be diagnosed by a simple blood test. One simple test. The amount of money that will be saved by your industry in the long term would be staggering.
I urge you to send a representative to the next Celiac Association Conference in your area. The knowledge you will obtain there could drastically affect future claims and significantly reduce the cases you currently have who actually have celiac disease and still are not aware of it.
If the medical community has this disease in the forefront, not only those affected by celiac disease, but your industry, would benefit greatly. Help us to educate the doctors who are on the front line to recognize this disease in its early stages.
Thank you for your time and consideration.
Kind regards,
Signed Here……….
If nothing else, I at least know that I have tried.....
Also, here is a copy of a letter I submitted to celiac associations:
CELIAC ASSOCIATION OF…………..
To Whom it may Concern:
My name is Karen _______ 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,
Hugs.
Karen
I feel embarassed... Thanks God, most of them do not know my real name. You know, I am a very shy person. (That´s the reason for better expressing myself writing rather than talking)... 
