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I Want To Be The First Celiac To.....


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DingoGirl Enthusiast

All good ideas Amybeth....but we must also make them understand our PAIN and SUFFERING while having these big food parties!!!

I wonder if we should make the gluten-free food we serve them taste really ghastly, so they feel even MORE sorry for us? ;)


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Guest BERNESES
:lol::lol::lol::lol::lol:

this is fantastic....

oh and by the way, Bev and everyone, I think CRAZY is actually when you fully lose touch with reality, right?....unfortunately that never happened to me, because I think that would have been enormously more enjoyable.... ;)

OH I HEAR YOU!

All good ideas Amybeth....but we must also make them understand our PAIN and SUFFERING while having these big food parties!!!

I wonder if we should make the gluten-free food we serve them taste really ghastly, so they feel even MORE sorry for us? ;)

:lol::lol::lol::lol::lol::lol::lol: LMAO

mellajane Explorer

Well hopefully then you are like every other celiac you wan toto do more for the cause.... Before I knew I hab celiac I was a Caterer, challenging yes.... so now I am trying to make my desserts gluten free and sell them.. This disease is so new getting involved now is going to be a very very great thing. Do what you can use your skills and your heart to help. I wish you the Best of Luck.. Good for You!

OK- so I NEED something to get me going again after everything that's gone on the last 3 months (quick version: had gall bladder out, took PhD exam, 36 year old husband had stroke, and now I have C Diff). I need something to look forward to, to strive for..... no, finishing my PhD is all well and good, but something more than that. That's like my career.

So, I was thinking I wanted to do something to raise Celiac awareness and money for Celiac research and be the first person with Celiac's to..... and that's where I get stuck. I want it to be something challenging, that I have to train for, but not too extreme. Don't want to be the first person with Celiac's to climb Mt Everest (too easy :P ). Something that I can raise money for and traon for between now and June 2007 because I could do it over next summer.

So, of course I've come up with silly ideas like:

1. First Celiac to try every gluten free beer in the world :P (OOH YEAH!!!!!!)

2. First Celiac to swim her way cross country (not literally- but drive from state to state and swim in at least one river/ocean/lake in every state (check out www.swimmingholes.org)

3. First Celiac to eat a pizza without keeling over (not worth it)

But I'm having trouble thinking of ideas that aren't too outrageous (like surfing on every continent which I would KILL to do but I have a hard time believing anyone would give me money to do this. Too fun!)

Marathon running is out (no back).

Someone biked across the US last summer to raise Celiac awareness so that's already been done.

Lets see- I like to swim, surf, ski, photograph, travel, walk, hike,

Looking for inspiration

Funny and outrageous ideas totally welcome!!!!

tiredofdoctors Enthusiast

If you want them to feel our pain, then let's do this: Have the world's largest Celiac pizza-eating convention . . . . and then hold the Guinness Book of World Record for the largest number of port-a-potties used during a 24 hour time period!!!!! :lol:

jerseyangel Proficient
If you want them to feel our pain, then let's do this: Have the world's largest Celiac pizza-eating convention . . . . and then hold the Guinness Book of World Record for the largest number of port-a-potties used during a 24 hour time period!!!!! :lol:

(Shuddering :unsure: ) I wouldn't even want to think about that! :o

Guest BERNESES

:lol::lol::lol::lol:

OUCH!!!!!!!!!!!!!!!!

penguin Community Regular
If you want them to feel our pain, then let's do this: Have the world's largest Celiac pizza-eating convention . . . . and then hold the Guinness Book of World Record for the largest number of port-a-potties used during a 24 hour time period!!!!! :lol:

That's funny, my mom was going to go to a gluten-free vendor fair in NY for me but she had a UTI and didn't want to go because she said, "I don't want to be somewhere and have to worry about there not being a bathroom."

I laughed and said, "mom, think about this for a second: It's a building full of celiacs, trust me, there will be bathrooms EVERYWHERE!" :P


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tiredofdoctors Enthusiast
:lol::lol: That's a hoot!!!!! :lol::lol:
Sweetfudge Community Regular

OMG THis sounds like so much fun! I really like the book idea. I looked on the chickensoup.com page and they have proposal ideas. What do you all think? I would love to be a part of putting this book together. I would also be very interested in a photography book...avid photographer here! :D I'd do a bike riding thing too...that would be fun!

Even better news...I have no life!!!!! So, if anyone is really serious about any of this, email me, cuz I'm all over it! I say let's start crackin' guys! Who can we get to help fund this, what should we do...LETS GO!!!

Seriously drop me a note, I'm so full of energy and ready to spread the celiac awareness to the WHOLE WORLD!!!

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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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