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14 replies to this topic

#1 anti-soprano

 
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Posted 20 August 2013 - 08:51 PM

Sorry if this is old news to any of you- but it's new to me, so I decided to share.  This is my new favorite website about Celiac Disease.  Lots of information in a concise and easy to read format from real, live, medical professionals.  Must be nice to be a celiac in chicago with this resource!

 

http://www.cureceliacdisease.org/faqs


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#2 w8in4dave

 
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Posted 21 August 2013 - 04:14 AM

Ohhh I like it!! It has alot of info in there!! Thanks!! Altho I don't live in Chicago. But it is nice to have some nice sites to send people to when they want to know about Celiac disease. I try and explain but sometimes they still do not get it. 


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Recovering Gluten Eater 

DX'd June 17th 2013


#3 mamaw

 
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Posted 21 August 2013 - 04:28 AM

yes lots  of info.... But  I think this  site  is  very  helpful getting  info  from others  who  walk the  walk!!!!


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#4 Rachel2writer

 
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Posted 21 August 2013 - 05:40 AM

Thanks! As someone newly diagnosed, I'm always happy to have more resources.


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Rachel

DX

Hashimoto's Thyroiditis 2/1996

Celiac Disease 7/2013


#5 anti-soprano

 
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Posted 22 August 2013 - 06:23 PM

yes lots  of info.... But  I think this  site  is  very  helpful getting  info  from others  who  walk the  walk!!!!

Agreed, Mamaw!   People in this forum are great and so very helpful.  This site is also wonderful for many other reasons.  I also don't feel alone here ...or crazy.  I know I can post about my frustrations and people will understand.  I know I can post some bizarre thing that my body is doing and someone out there has already been-there-done-that. Invaluable feedback.

 

However, if you want to know medical facts, I would suggest going to my new fav website (as opposed to my longtime fav website): What's the medical difference between gluten intolerance and celiac, how to conduct a gluten challenge (how much and for how long), what are the genetic odds that immediate family members also have celiac, etc.  The info is provided by experts in the field and is up to date.  Just the facts ma'am.


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#6 powerofpositivethinking

 
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Posted 22 August 2013 - 06:37 PM

anti-soprano because of your post I visited the Chicago site even though I use it often, and just for fun searched "DGP"  They now have this posted:

 

http://www.curecelia...-celiac-disease

 

I got a positive DGP-IgG score but nothing else, and although they kind of dance around the question, it relates the test to celiac instead of gluten intolerance.  I plan on sending this link to family members.

 

Thank you!


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Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#7 anti-soprano

 
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Posted 22 August 2013 - 07:32 PM

anti-soprano because of your post I visited the Chicago site even though I use it often, and just for fun searched "DGP"  They now have this posted:

 

http://www.curecelia...-celiac-disease

 

I got a positive DGP-IgG score but nothing else, and although they kind of dance around the question, it relates the test to celiac instead of gluten intolerance.  I plan on sending this link to family members.

 

Thank you!

Woo-Hoo!  Go science!!

So glad I posted this :D  


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#8 Tbolt47

 
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Posted 23 August 2013 - 09:17 AM

Sorry if this is old news to any of you- but it's new to me, so I decided to share.  This is my new favorite website about Celiac Disease.  Lots of information in a concise and easy to read format from real, live, medical professionals.  Must be nice to be a celiac in chicago with this resource!

 

http://www.cureceliacdisease.org/faqs

I agree, and I think the Univ. of Chicago website is most informative site as well. Here is one I find a close second:

http://www.thepatientceliac.com/

It is authored by a women who has Celiac and happens to be an MD ,some of her children were diagnosed as well.


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" Any man who thinks he can be happy and prosperous by letting the government take care of him better take a closer look at the American Indian "  - Henry Ford

 

"What I can give, is never as much as I get from the giving "  -Author Unknown

 

 

 


#9 w8in4dave

 
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Posted 23 August 2013 - 05:42 PM

I like thepatientceliac also .. but it was having a very slow time coming up!! I might look at it again when the web is not guite so busy!! 


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DX'd June 17th 2013


#10 IrishHeart

 
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Posted 23 August 2013 - 07:49 PM

KarenG, "GottaSki" Lisa and I are always posting links to the U of C website. :)

We also agree...it has the most comprehensive information in one spot.

 

I also like Tricia Thompson and Shelley Case's sites for nutritional information

and the book Real Life With Celiac Disease by Melinda Dennis

and Daniel Leffler.

Excellent Resource--covering dozens of topics written by over 50 celiac specialists.

 

And "the patient celiac" is extremely informative. Jess knows her stuff. And she graciously shares

her knowledge on various celiac-related sites as well as her own. 


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#11 w8in4dave

 
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Posted 25 August 2013 - 05:04 AM

Yes they are all great Irish Heart , but yet I hang in here :) This is a very nice site!! I do refer to this site if and when people have questions, either they don't understand and I cannot explain , Or don't have time to explain, I just hand them a sheet of paper with the website on it. I just really like to see it from all sides from different people and such , different perspectives , different stories. But having a  site like this where you can talk and get more and more information from, trials , and tribulations. Is wonderful!! Makes me feel I am not alone in this world! And seems so much stuff comes together for me when I read some of the stuff some have to say. I visit other sites , read them , think wow that was a good site!! Then I come in here :) 


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Recovering Gluten Eater 

DX'd June 17th 2013


#12 IrishHeart

 
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Posted 25 August 2013 - 05:19 AM

We do kinda grow on ya, don't we? (like mold)

And we are wicked smart. (ahem, and humble)

:D

seriously, though.....I have always found the advice from real live celiac veterans to be the best resource there is,

next to the celiac specialists.


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#13 w8in4dave

 
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Posted 25 August 2013 - 11:23 AM

Yes they are all great Irish Heart , but yet I hang in here :) This is a very nice site!! I do refer to this site if and when people have questions, either they don't understand and I cannot explain , Or don't have time to explain, I just hand them a sheet of paper with the website on it. I just really like to see it from all sides from different people and such , different perspectives , different stories. But having a  site like this where you can talk and get more and more information from, trials , and tribulations. Is wonderful!! Makes me feel I am not alone in this world! And seems so much stuff comes together for me when I read some of the stuff some have to say. I visit other sites , read them , think wow that was a good site!! Then I come in here :)

Absolutely!! 


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Recovering Gluten Eater 

DX'd June 17th 2013


#14 moosemalibu

 
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Posted 26 August 2013 - 11:44 AM

All of the websites that have been mentioned in this thread have been super helpful for me and my family while I am learning about my recent diagnosis. Thanks so much! I have a background in science so it's lovely to read all the scientific statistic based research as well as personal experiences.


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Jamie


"We can't help everyone, but everyone can help someone." Ronald Reagan

  • Diagnosed Celiac via blood test 8-22-13
  • Dairy & gluten free in 8-22-13 then did gluten challenge in October
  • Endoscopy/Biopsy Oct-26-13 positive for Celiac
  • HLA-DQ2 positive
  • Vitamin D insufficiency 12-6-13 (had it prior no doubt, just wasn't checked until December)
  • Dairy Added back in successfully 3-1-14
  • Normal Antibody Levels 3-19-14! 
  • Egg, sugar alcohols Intolerant 5-2014

Supplements: Fish Oil, Digestive enzymes, probiotics, biotin, multivitamin, joint supplement, psyllium husk

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#15 eers03

 
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Posted 26 August 2013 - 06:29 PM

It is a great site.  They need a link to this forum, though!  The people on here are amazing.


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Diagnosis 11/2012




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