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Crusade


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18 replies to this topic

#16 Marie1976

 
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Posted 06 May 2013 - 04:50 PM

I agree about certain things not needing "awareness" at this point. Really who the hell isn't aware of breast cancer? That's not to say it's not serious -- I have had several members of my family that had breast cancer. But it's the unknown ones that need awareness! If I had been aware of celiac disease (or bladder prolapse!) I would not have suffered as long as I did.  

 

Good luck with your family, Adelaide. I have had family members say I'm a hypochondriac even after I was diagnosed! And I know which side of the family too, but it has done no good whatsoever to tell them to get tested. They are stubborn and in denial. I gave information and they can do with it what they will. They're adults and can make their own decisions. Whether I like it or not, LOL! ;) 


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#17 VeggieGal

 
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Posted 08 May 2013 - 10:47 AM

Great idea about putting the awareness banner on facebook. I'll do it too :)

Just wondering though if theres an awareness page than can be shared on there what actually explains what:
celiac disease is and caused by
symptoms (and not just the standard but also neuro and weight gain as people always assume its just skinny people with stomach issues that get it)
etc etc ???

I just can't seem to find anything which stands out on ONE page. The awareness banner is good but before I was diagnosed , I didnt have a clue about celiac disease and based on the name alone, I might not have googled it to find out more. Hope this makes sense.
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#18 Adalaide

 
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Posted 08 May 2013 - 11:16 AM

The first week I included a link every day to something different I wanted to highlight from the University of Chicago Celiac Disease Center. Overall I focused on symptoms and getting a diagnosis. This week I have been doing something different and asking people to reach out to others in need and letting them know that if they want more info they can come here to ask questions. Next week I'll pick a different overall topic. But no, I have not found a place where you can get it all, quite simply, in one place. Everywhere I look it focuses on how it is weight loss and the big D... well if we keep only using that as our standard for testing we are leaving too many out in the cold. There is some good info on the U of C site, some here, some other places. But as for something in particular that covers a large portion of the lesser known symptoms that stood out for many of us for many years? Zip. Of course, I may just not be finding it.


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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#19 VeggieGal

 
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Posted 08 May 2013 - 11:30 AM

Thanks Addy, I'll try what you are doing then and check out the u&c website. Its about time that awareness was out there. I sometimes wonder though if the food industry and health institutes would be able to cope with whats probably the true figures/amount of people out there with celiac.

I'll join your crusade too :)
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