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Awareness


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#16 stef_the_kicking_cuty

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Posted 23 June 2005 - 08:34 PM

I thought about writing my former doctors, too. A lot of them didn't have a clue and one even blamed me and said, it's all in my head. I really would like to educate them on celiac disease B) . I probably never know what they think about this, cause I doubt, they give me a phone call over the atlantic :lol: .
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Results for 2011:
1x PA State Champ (I defended my title in pointfighting) and also again Grand Champion in pointfighting
August 20-27: Karate and Kickboxing World Championships in Germany (my homecountry)
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Shermans Dale, PA

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#17 frenchiemama

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Posted 24 June 2005 - 10:11 PM

On another chat board that I belong to I have my celiac story and a bunch of information and links about celiac in my community bio. I have had a couple people seek me out to ask questions about it and I have referred them here. I also talk to everyone who will listen about it, so now every one I work with (including a bunch of the truck drivers) are very celiac savvy.
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Carolyn


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#18 celiachap

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Posted 24 June 2005 - 10:43 PM

I also talk it up, to anybody and everybopdy that is interested and will listen!
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Diagnosed with Celiac March, 2005: Positive endoscopy, blood tests and biopsy. Gluten free since March 2005.

Retested Jan. 2006: Negative blood tests: "Results do not support a diagnosis of celiac disease. Serological markers for celiac disease were not detected."

Results for 2006 endoscope/biopsy pending.


Ignorance is preferable to error, and he is less remote from the truth who believes nothing than he who believes what is wrong.
-Thomas Jefferson

Give me the storm and stress of thought and action rather than the dead calm of ignorance and faith. Banish me from Eden when you will but first let me eat of the fruit of the Tree of Knowledge.
- Robert Green Ingersoll

#19 egardner

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Posted 25 June 2005 - 07:55 AM

Oh, me too, for sure. In fact, I feel like as carriers of the disease it is our JOB to inform the uninformed. Most people will be surprised that they have never even heard of it, seeing as how it is NOT rare. (I don't consider 1 in every 130 people rare...) I like to let people know about it because beating ignorance is half the battle, if you educate you are that much closer to the finish line....
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#20 Guest_nini_*

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Posted 25 June 2005 - 10:23 AM

The health food co-op that I get most of our gluten-free foods at didn't start carrying a lot of gluten free foods until I started writing the articles for them. Also if I have found products on the internet, and liked them, they will try to get them in for me and carry them for all of their gluten-free customers. Today they were having there summer festival and they were giving out samples of some gluten-free foods and the grocery manager was giving out Food's By George gluten-free Brownies... since the reason she got those in was because of my daughter, she cut her an extra large brownie for her to eat on the way home! I get so tickled every time I am in there and I run into more and more people on the gluten free foods aisle and I know that I had a lot to do with that section being created!
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#21 julie5914

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Posted 29 June 2005 - 12:12 PM

I am a member of our local Toastmasters and gave a speech on it Tuesday. So there's about 20 more people who are educated on it! I got Best Speaker too!
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Blood work positive
Dx with IBS 5 years ago
Dx with Celiac and gluten-free since 6/17/05

#22 Guest_Viola_*

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Posted 29 June 2005 - 12:17 PM

Way to go Julie5914! Good Job :D
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#23 Jnkmnky

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Posted 29 June 2005 - 12:35 PM

I had to educate the nurse at my drs today. She was taking blood from me and two of my kids for the Prometheus Labs celiac disease kit. It's so disheartening to be in a medical environment and have the professionals not know what you're telling them.
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#24 jenvan

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Posted 29 June 2005 - 12:38 PM

Update on me--getting ready to send out the dr letters/fact sheets and my letter to Marsh--Indianapolis based, strong midwest grocery store. I hope to meet with the head of their purchasing soon. I also met with a woman from our public tv/radio station. I am contacting one of the shows that highlights medical issues to see if they will do a story. I'll let you know!
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~~~~~~~
Jen
Indianapolis, IN

gluten-free since Feb 2005
dairy-free

#25 mytummyhurts

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Posted 29 June 2005 - 05:37 PM

Wow, Jen. You are really on top of things. Good Job!
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#26 coeliacinfostand

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Posted 30 June 2005 - 07:33 PM

I have posted on a different part of this message board ("Doctors" category), some of the methods I use to educate doctors. I continually visit many of the medical centres around here dopping off "Coeliac Society" pamphlets for their waiting rooms, occasionally put up posters on their notice boards. The rest of it yo can read at:

http://www.glutenfre...opic=6689&st=30

plus the discussion which follows.

I am always looking for new ways to "spread the word".

Any comments on what I am doing or any other new ideas?

Alan
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#27 Guest_mlwaller_*

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Posted 30 June 2005 - 10:19 PM

Ok Guys, I was diagnosed in January and have just been getting the hang of everything since. Recently I have felt the urge to raise awareness, as I was misdiagnosed for 18 years and inaccurately "tested" for celiac disease three times (including an endoscopy without a single biopsy). So my first plan of action was to write to previous docs. Several of you have mentioned doing this, but my biggest fear is coming off too strong or even rude, and not using the opportunity to open their minds. What can you suggest?

Also I wanted to distribute some pamphlets or information flyers to my local clynic and hospital and wondered if anyone knew a good source to obtain these?

Thanks so much, even though I haven't been active on the boards yet, justing reading all your previous posts has helped me a ton.

Megan
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#28 debmidge

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Posted 01 July 2005 - 02:26 AM

I go in spurts on this. This is a topic that I am not shy to talk about; it's just the time and place sometimes don't lend themselves to the opportunity.

I purchased the celiac "living a full life" from the offical org and I give them out (sometimes I make editorial comments in the margins or yellow highlighter) ; I leave them in all waiting rooms of the medical variety (dentist, primary doctor, ob/gyn, x-ray lab, blood lab etc. ) and hair salon too. Sometimes I put a label on it with a typed note "DO NOT THROW AWAY - WAITING ROOM COPY" as these booklets are .50 each and can get pricey if I have to keep replacing the copy.

I've given them to the local Girl Scout Leader when they were selling their cookies at a table in front of the local supermarket. Of course the leader didn't know what celiac was and I didn't expect her to; but I certainly introduced her to something new. Maybe they'll make a Girl Scout badge for it! In retrospect, maybe like the person who does the Toastmasters speech, a small talk can be given to boy or girl scouts (I'm sure they run out of speakers and things like that.....).

I also made a one page flyer that I sometimes give out too. I wanted to place the flyiers on windshields of cars at supermarket, but I am afraid that the supermarket might tell me to stop and I'd be humiliated somewhat. Maybe I should do that at a supermarket parking lot where they don't know me......

In our area, at the supermarkets, we always have kids looking for funding for their particular sport/hobby/school prom, etc. They are always out there with a bucket. Most of the time it's the local little cheerleaders or softball teams. I could give them a flyer or booklet when I give them their donation at the door of the supermarket (give booklet to parent to read and ask that in return for donation they take a moment to review my info). Just looking for a creative way to share this info.

A lot of people are amazed when I tell them that 1) it runs in families 2) approx 1 in 133 people have it as per the NIH.

I'd LOVE to write to the main doctor who misdiagnosed my husband in 1994 and pretty much told him that his symptoms were in his head! I've been itching to write to him or better yet his superiors at the large, posh medical group he works for. It's been on my list of "Things to Do" for several months now, but I am so angry that I'm afraid I'll come across with my anger instead of plainly presenting the story and how we came to the celiac disease conclusion. Also, they'd probably respond by saying that my husband came down with celiac disease in 2003 and in their opinion had no signs of it in 1994 (even though the symptoms never changed since 1978!!). This group really bombed when they examined him. No specific blood test for the antibodies, no endoscopy, no colonsopy even! Better yet, I'd LOVE to contact a lawyer if the statute of limitations isn't over!

I'd like to hear from others to know how they spread this "word" around. Maybe some else uses another method that one of us can use too. Let's keep this topic open.

Also, I have told non-celiacs to come to this forum just to read it (not to join) and read the "Coping" section and the pre and post diagnosis and see what people with celiac feel, experience, etc.
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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

#29 jenvan

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Posted 01 July 2005 - 04:46 AM

hey all-- I saw some of you were asking about ways to approach drs, so i am posting the text from one of the doctor letters I'm sending out-in case someone wants to use it as an example for their own. My philosophy is that the letter needs to be somewhat concise, and "kind." Even if I am angry at my drs for missing my diagnosis or frustrated with them, if anger or resentment comes through in my letter, they will disregard it. And as we know, many doctors have a fair amount of pride in their knowledge base, so I think a somewhat "humble" approach in feel might help catch some of them off guard. I'll let you know what I hear--am going to send them out this weekend!


Dear Dr. Stout,

I am a past patient of yours, and I am writing in reference to my recent diagnosis which I think will be of interest to you. In February of this year, I was diagnosed with Celiac Disease. This came as shock to many, including my physician who thought my many health issues were IBS and sleep related. I have had several health issues for about 15 years, but because Celiac Disease is still thought of as rare and my symptoms did not fit the original paradigm of the disease, no one ever thought to test me.

I am writing to humbly ask you to examine your paradigm of Celiac Disease. Statistics show that as many as 1 in 133 people have Celiac Disease, and that now a majority of those individuals are overweight and have diabetes. I experienced no weight loss or diarrhea, but anemia, IBS, fibromyalgia and chronic constipation. More than half of individuals with Celiac experience no symptoms at all.

I have included some Celiac fact sheets from the University of Chicago’s Celiac Center. I hope you will look them over for any new information and seriously consider making them available for patients to read in your office.

I believe doctors like you are a critical piece in the increased education and of course, diagnosis of Celiac disease. Others like myself need your wisdom and recommendations. Currently, it takes an average of 11 years for a Celiac to receive a diagnosis. This statistic is consistent with my own experience. As a result of the delay in my own diagnosis, I now suffer from chronic muscle pain, reynaud’s and psoriasis. Unfortunately for many, a late diagnosis means a high risk of developing others diseases and lymphoma.

Inevitably, you will meet and diagnosis Celiacs in the future. So, it is helpful for you to know there is an active support group of Celiacs in the Indianapolis area. I encourage you to notify your Celiac patients of the website for information: www.glutenfreeindy.com. This site is a great resource and includes information on the disease itself, different aspects of living a gluten-free lifestyle and how to get connected to a local support group.

I greatly appreciate your time in this matter. I have much respect for your position and know that your level of influence within the community, and the lives of many individuals, is great. If you wish to contact me, please do so at the above information. Thank you.

Sincerely,
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~~~~~~~
Jen
Indianapolis, IN

gluten-free since Feb 2005
dairy-free

#30 coeliacinfostand

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Posted 01 July 2005 - 03:46 PM

The pamphlet I give out to doctors is the GESA one at:

http://www.gesa.org....liac_A4Card.pdf

Our coeliac society reprints these. I give them to doctors, and I give them to people with symptoms to give to their doctors.

Alan
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