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Myspace


DragonQueen

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LqrMan Newbie

I just joined that group too. There are at least 5 other groups for celiacs on my space as well. Some guy even started a group for GLUTEN LOVERS...lol...how sad.


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Moongirl Community Regular

eww that pretty sad....but hey if he really likes it that much.... :huh: let him eat all he wants

jerseyangel Proficient
Woo hoo! I'm in! Patti-what’s your my space address?

It's My Space/pattinsj--I'm flying by the seat of my pants over there! This board is the only time I've been involved in an online group. I joined up so I could be a part of the Celiac group that Bronco started. Now I really have to get a picture! We bought a digital camera, so now I have no more excuses :D If I need help, can I count on you? :huh:

jenvan Collaborator

Sure thing Patti..I'll help you out! Its not hard...I'm still a baby as far as myspacers go, but I can only be a slave to one site at a time :)

Claire Collaborator

broncobux- thanks for the help. As I said, I am very used to computers - work hours a day here but this just didn't work. I finally took the URL, pasted it into a doc and made it inactive and then activated it from that location. With that it worked fine. I did sign up but don't know how much I will get there. It it will take a bit to get used to it and I already spend too much time here!

Too many plates in the air! Thanks again. Claire

KaitiUSA Enthusiast

I just now found this thread...I will join today:)

my space.com/kaitiusa

KaitiUSA Enthusiast

I can't get to the link..it keeps saying this page can't be displayed


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VegasCeliacBuckeye Collaborator

Sorry Claire,

I misread your post -- I thought it said "I am NOT computer savvy" -- my fault -- now my former post looks condescending...

:(

No offense I hope

Welcome to the group Kaiti and Brit!

We now have 13 -- keep em coming!!

MySuicidalTurtle Enthusiast

Did you gues delete your group? I searched on MySpace and found many other Celiac groups but not this one.

jerseyangel Proficient

No--it's there. It's called Gluten Free Freaks.

MySuicidalTurtle Enthusiast

I found "Gluten Free Freaks" easily this time, thank you.

num1habsfan Rising Star

if anyone wants to add me (that I havent already found) my name/page on there is num1habsfan :P

~lisa~

  • 1 month later...
Kayla Nichole Newbie

YAY I joined.....thats how I actually found this site, from a group in myspace, its the first one when you type in "Celiac" you guys should join it also.....you can never be in to many groups B)

jenvan Collaborator

Welcome here Kayla!

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    • trents
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      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
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      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
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