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

Guest BERNESES

By Guest BERNESES
in Publications & Publicity

Recommended Posts

DingoGirl Enthusiast
DingoGirl
Posted

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
Guest BERNESES
Posted
: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
mellajane
Posted

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
tiredofdoctors
Posted

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
jerseyangel
Posted
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
Guest BERNESES
Posted

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

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

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

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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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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