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anti-soprano

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anti-soprano Apprentice
anti-soprano
Posted

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!

 

Open Original Shared Link

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w8in4dave Community Regular
w8in4dave
Posted

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. 

mamaw Community Regular
mamaw
Posted

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

Rachel2writer Newbie
Rachel2writer
Posted

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

anti-soprano Apprentice
anti-soprano
Posted
  • Author

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.

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

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:

 

Open Original Shared Link

 

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!

anti-soprano Apprentice
anti-soprano
Posted
  • Author

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:

 

Open Original Shared Link

 

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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Tbolt47 Newbie
Tbolt47
Posted

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!

 

Open Original Shared Link

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

Open Original Shared Link

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

w8in4dave Community Regular
w8in4dave
Posted

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!! 

IrishHeart Veteran
IrishHeart
Posted

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. 

w8in4dave Community Regular
w8in4dave
Posted

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 :) 

IrishHeart Veteran
IrishHeart
Posted

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.

w8in4dave Community Regular
w8in4dave
Posted

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!! 

moosemalibu Collaborator
moosemalibu
Posted

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.

eers03 Explorer
eers03
Posted

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

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      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

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      Son's legs shaking

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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