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Celiac Awareness Organization?

Aerin328

By Aerin328
in Publications & Publicity

Recommended Posts

Aerin328 Apprentice
Aerin328
Posted

Does there exist some kind of formal organization that promotes Celiac awareness in the public and to medical professionals?

1 in 133 people in the US have Celiac's disease, and until last month (when I was deathly ill) I had never heard of it (and my PCP did not understand it / even test for it) ... Is there some way we can publicly get involved to help spread awareness?

Thanks!

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rinne Apprentice
rinne
Posted

There are groups, here in Canada there are Federal and Provincial organizations that do public awareness and offer support. Have you tried googling your area?

There is a great thread on this forum, something like, "I want to be the first Celiac to..." and they are talking about public awareness. I think you may find that just being diagnosed with Celiac leads you to promoting public awareness, it amazes me as I talk to people just how many how ill with digestive problems and as you say, how few know about Celiac.

Welcome, this is a great place with lots of knowledgeable people but not me, I am new to this too.

Were you ill for a long time before your diagnosis?

Aerin328 Apprentice
Aerin328
Posted
  • Author

(Btw I'm sorry I posted this discussion in the incorrect forum area by mistake!)

Rinne: Yes, I was very sick for three+ months and was recently diagnosed. I won't go into all the crazy details but it's the sickest I've ever been, missed almost a month of work, etc. This whole experience has made me want to bring better awareness to this wide-spread issue. You are right that we each can spread awareness by our common contacts- already my family has purchased 3 books on the subject and my mother has even gone to get tested!

How about you, Rinne? Were you recently diagnosed/ have you been sick long??

lorka150 Collaborator
lorka150
Posted
:) you can always start up your own group, too, if there isn't one in your area.
marycubs Rookie
marycubs
Posted

Hi -

I posted this last week:

"I found a site that I thought has a good overview of Celiac Disease - and wants to increase awareness of celiac disease. The personal stories section highlights how varied the symptoms can be - and how frustrating the lack of diagnosis can be.

In case you haven't seen it :

http://www.celiacawareness.org"

Also - look at the posting in this category about the NIH promoting celiac awareness. There's a link to order publications - I've ordered 50 and am going to forward them to my local TV/radio/newspapers. If a bunch of us do this - it will help awareness.

Mary

Aerin328 Apprentice
Aerin328
Posted
  • Author

Thank you, I will definitely check it out! :)

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    • Matthias
      Unexpected gluten exposure risk from cultivated mushrooms

      By Matthias · Posted

      Thanks a lot for your response! Can you maybe specify which kind of cheeses I should be cautious about? Camembert/Brie and blue cheeses (the molds of which are nowadays mostly grown on gluten-free media, though, so I've read, right?) or other ones as well? Also, I was under the impression that yeast is generally gluten-free if not declared otherwise. Is that false?
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