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Celiac Awareness Organization?
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6 posts in this topic

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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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?

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(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??

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

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

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    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
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