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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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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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