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Celiac Awareness Organization?


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5 replies to this topic

#1 Aerin328

 
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Posted 23 July 2006 - 05:41 AM

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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Gluten free since 7/6/06. :)

Enterolab Results positive 8/24/06:
Antigliadin IgA 33 (Normal Range <10 Units)
Antitissue Transglutaminase IgA 16 Units (Normal Range <10 Units)
Anti-casein (cow’s milk) IgA antibody 21 Units (Normal Range <10 Units)
Serologic equivalent: HLA-DQ 3,1 (Subtype 8,5)

Blood test somewhat positive 7/6/06:
Antigliadin IgG (only) 57 (Normal range <20 units)

"Perspective is Reality"

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#2 rinne

 
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Posted 23 July 2006 - 07:11 AM

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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A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

#3 Aerin328

 
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Posted 23 July 2006 - 08:34 AM

(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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Gluten free since 7/6/06. :)

Enterolab Results positive 8/24/06:
Antigliadin IgA 33 (Normal Range <10 Units)
Antitissue Transglutaminase IgA 16 Units (Normal Range <10 Units)
Anti-casein (cow’s milk) IgA antibody 21 Units (Normal Range <10 Units)
Serologic equivalent: HLA-DQ 3,1 (Subtype 8,5)

Blood test somewhat positive 7/6/06:
Antigliadin IgG (only) 57 (Normal range <20 units)

"Perspective is Reality"

#4 lorka150

 
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Posted 23 July 2006 - 07:35 PM

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

#5 marycubs

 
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Posted 24 July 2006 - 09:01 AM

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 :

[url="http://www.celiacawareness.org""]http://www.celiacawareness.org"[/url]

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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#6 Aerin328

 
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Posted 24 July 2006 - 02:27 PM

Thank you, I will definitely check it out! :)
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Gluten free since 7/6/06. :)

Enterolab Results positive 8/24/06:
Antigliadin IgA 33 (Normal Range <10 Units)
Antitissue Transglutaminase IgA 16 Units (Normal Range <10 Units)
Anti-casein (cow’s milk) IgA antibody 21 Units (Normal Range <10 Units)
Serologic equivalent: HLA-DQ 3,1 (Subtype 8,5)

Blood test somewhat positive 7/6/06:
Antigliadin IgG (only) 57 (Normal range <20 units)

"Perspective is Reality"




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