Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

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


Guest BERNESES

Recommended Posts

Guest BERNESES

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!!!!

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



DingoGirl Enthusiast

excellent Bev, and may I say that you certainly have more energy/strength than I did during my siege with c. diff!! :)

I will ponder these things. I am really wanting to "raise awareness" (such an over-used term) about Celiac....my shrink was pleased to hear about the brain issues today and what I've learned. He is a gentle and thoughtful man and was most interested. He said that in this country, Celiac is like an "orphan" disease - not popular. He said that Brad Pitt needs to get it, or somebody like that. :D BTW I told my shrink that I wouldn't be needing him as much any more, and he was so pleased. I am off almost all meds and feeling great - --

But back to topic - - I'm starting to write letters to pertinent people, getting the word out. BUT....something more dramatic must be done!

What about Kilamanjaro....even Martha Stewart did that.... ;) YOu would love it - - so would I, in better shape...

hmmmmm....pondering this one......

Link to comment
Share on other sites
penguin Community Regular

I'm not as "in to" the whole excercise thing. I'm no help there.

I want to be the first sillyak with a show on the Food Network :)

Like a gluten-free Paula Deen...

Link to comment
Share on other sites
eleep Enthusiast

Well -- there's always my own personal goal:

I want the be the first celiac to thru-hike the Appalachian Trail. Somehow I don't think I'd be the first, but it might be good to be the first group of celiacs to do so!

I don't know whether anyone would give us money for that or not -- seems too selfish, somehow!

Link to comment
Share on other sites
jennyj Collaborator
I'm not as "in to" the whole excercise thing. I'm no help there.

I want to be the first sillyak with a show on the Food Network :)

Like a gluten-free Paula Deen...

Horray for you!!!!!! I'd watch :lol:

Link to comment
Share on other sites
tarnalberry Community Regular

First celiac to photograph celiacs having lovely meals in all the restaurants around the country that cater to celiacs. You could not only get funding from celiac associations and research centers, but also restaurant chains if you can come up with a plan for getting some media attention (or, for that matter, you might get the media to pay for some of it).

(If backpacking was on the list, I'd say the first celiac to backpack the PCT (pacific crest trail - runs from canada to mexico). You could probably get sponsors from some food vendors. I picked up a bunch of Gluten Free Pantry food just for backpacking.)

Link to comment
Share on other sites
Guest BERNESES
Well -- there's always my own personal goal:

I want the be the first celiac to thru-hike the Appalachian Trail. Somehow I don't think I'd be the first, but it might be good to be the first group of celiacs to do so!

I don't know whether anyone would give us money for that or not -- seems too selfish, somehow!

That's a cool idea!!!!!!! I bet people would donate money for that. A group would be really cool but I don't think I can commit to the six month trek. :( We should keep that one in the "things to ponder" file.

It DEFINITELY does not have to be exercise related....My husband just came back from a Red Sox game and I thought it would be cool to do something like travel to every baseball stadium in the US and sing the Star Spangled banner ('cept I can't sing worth s*&t but I could spend the 9 months taking voice lessons :P ) or get every stadium in the country to carry gluten free beer (yeah- that now that's selfish!).

Kilimanjaro is a cool idea. Which one did Climb for a Cure do? Somewhere in So America. I would LOVE that. Or maybe keep it US and do Whitney which is the highest peak in the continental US. Denali- no.

But I'm thinking FUN too, Penguin (It's so weird to call you that- you're Chelsea) !

Keep the ideas coming. It could even be a group thing. Even more fun!!!!!!!!!!!!!!!!

First celiac to photograph celiacs having lovely meals in all the restaurants around the country that cater to celiacs. You could not only get funding from celiac associations and research centers, but also restaurant chains if you can come up with a plan for getting some media attention (or, for that matter, you might get the media to pay for some of it).

OMG- what a great idea. Like one restaurant in every state. Ooohhh... I like that!!!!!!!!!!!! Instead of fast Food Nation it could be Safe Food Nation. Restaurants would be all over that! It would be good publicity. Actually, it wuld be cool to have restaurants submit the ultimate gluten-free dinner and start a website where people vote which restaurant I go to in every city (I could hit all the state capitals). That would be cool. Local specialties gluten free.

Or get Morgan Spurlock to come live with me for 30 days and eat gluten-free. His show 30 days is awesome. But I want it to be fun too!!!!!!!!!!!!!!!

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



eleep Enthusiast

If nothing else, I think I'm eventually going to start a celiac.com trekking group now that all the hikers are coming out of the woodwork.

Is there something that could be sold? I'm remembering selling gummi bears in high school to pay for my exchange-student trip to Germany. Could we sell baskets filled with Larabars and Immodium?

Link to comment
Share on other sites
Guest BERNESES
Is there something that could be sold? I'm remembering selling gummi bears in high school to pay for my exchange-student trip to Germany. Could we sell baskets filled with Larabars and Immodium?

LMAO!!!!!!!!!!!!!!!!!!!!!

Link to comment
Share on other sites
jerseyangel Proficient
Or get Morgan Spurlock to come live with me for 30 days and eat gluten-free. His show 30 days is awesome. But I want it to be fun too!!!!!!!!!!!!!!!

I love this one!!!!! :D

Link to comment
Share on other sites
Guest Robbin
If nothing else, I think I'm eventually going to start a celiac.com trekking group now that all the hikers are coming out of the woodwork.

Is there something that could be sold? I'm remembering selling gummi bears in high school to pay for my exchange-student trip to Germany. Could we sell baskets filled with Larabars and Immodium?

Erica-you are too funny! I have a goal to at least do two states of the great Appalachian Trail in my lifetime. I think it will take me another year to get to a good place health-wise, but I will sure give it my best. The photograph idea is a great one. I would be interested in a book like that with the names of the places and their menus and pictures of celiacs eating and relaxing at the dining tables!

Love the Morgan Spurlock idea!!

Chelsea, I love that idea. I have dreamed of a show like that :) !

Bev, How about a documentary like "The life of a celiac" showing the frustration of meal planning, restaurant problems, doctor problems, finding decent bathrooms on the road in an emergency, etc. :D Not Morgan Spurlock, but you as the guide.

Link to comment
Share on other sites
frenchiemama Collaborator

How about organizing an "eat in" or an "eating for awareness" campaign? People could post all of the safe restaurants in their area, and on a chosen day everyone would go out to eat with their families wearing T-shirts with some kind of logo or slogan on them. Or maybe pick certain restaurants and everyone in the area would descend en mass to eat dinner. If nothing else, it would be visible and maybe some kind of fundraising could be done selling t-shirts. I don't know. Is that silly?

Or better yet, try to enlist the help of one of the celiac friendly chains like Outback or PF Changs. Then on the chosen day everyone would go to one of those specific restaurants. It might be a good visual reminder of how many people are impacted by this disease if 25 celiacs all show up for dinner at once.

Link to comment
Share on other sites
2Boys4Me Enthusiast
Or better yet, try to enlist the help of one of the celiac friendly chains like Outback or PF Changs. Then on the chosen day everyone would go to one of those specific restaurants. It might be a good visual reminder of how many people are impacted by this disease if 25 celiacs all show up for dinner at once.
Plus the families that eat with them. Let's face it, when one person in the family has Celiac, it changes everyone's diet to a certain extent. We only buy gluten-free cereal now. Where 4 people used to eat Kellogg's now it's zero. The end result has to be to encourage more people to get on board with being celiac friendly or at least aware that bread=flour=wheat=even if it's "white" bread.

Know what I mean?

Link to comment
Share on other sites
eleep Enthusiast

There could be some kind of riff on the Bake-off or Bakesale theme.

Link to comment
Share on other sites
Turtle Enthusiast

Hey!

Great thoughts and ideas. I've been thinking about doing a bike ride (& get some of my friends to help too) to earn $$ for research (once i'm more trained, i'm only up to 15 miles right now). We'll see....that's kinda my overall yearly goal (besides losing some of this stupid gluten-free weight gain agh!)

BUT, i'm also a BIG hiker and I love the App Trail idea. Maybe that could be a group thing....and for those who can't or don't want to do the entire trail maybe just do the portion of the trail in your area, or closest to you or whatever part you want to do, etc.

Link to comment
Share on other sites
Guest BERNESES
Hey!

Great thoughts and ideas. I've been thinking about doing a bike ride (& get some of my friends to help too) to earn $$ for research (once i'm more trained, i'm only up to 15 miles right now). We'll see....that's kinda my overall yearly goal (besides losing some of this stupid gluten-free weight gain agh!)

BUT, i'm also a BIG hiker and I love the App Trail idea. Maybe that could be a group thing....and for those who can't or don't want to do the entire trail maybe just do the portion of the trail in your area, or closest to you or whatever part you want to do, etc.

That would be cool!!!!!!!!! We could even do like relay teams where whoever lives in Georgia does that part, and then each person does a state or whatever portion they can on up to Maine and then have a similar relay on the Pacific Crest Trail.

I was thinking about maybe making my first attempt local and going from there. These are ALL great ideas. I like the eat-in with a chain where on a given night everyone goes to the Outback or someplace that has a gluten-free menu and wears a t-shirt. And the family point is so KEY because you're right, if one person in a family has it, everyone does.

Keep 'em coming!!!!!!!!!!!!! You guys are awesome. Would love to do the book. maybe I really should get in touch with Morgan Spurlock. He could do a Thirty Days where a family that eats a lot of gluten would volunteer to go gluten-free for 30 days and show their frustration food shopping, packing kids' lunches etc. How about a volunteer fraternity- no beer and pizza for 3- days? THAT would be VERY interesting!

Link to comment
Share on other sites
eleep Enthusiast

The volunteer fraternity thing would crack me up. My ex-boyfriend was Sig. Ep. and, in my more bitter-haha moments, I've thought that he dumped me because he was appalled at the idea that someone could live a life without beer!

Link to comment
Share on other sites
penguin Community Regular
The volunteer fraternity thing would crack me up. My ex-boyfriend was Sig. Ep. and, in my more bitter-haha moments, I've thought that he dumped me because he was appalled at the idea that someone could live a life without beer!

LOL, in my experience, Sig Ep's would rather give up breathing than give up beer :rolleyes:

Link to comment
Share on other sites
eleep Enthusiast

I've been thinking about this stuff and I had a little daydream on my way to teaching class today (seems I can't keep my mind on the American Literature I'm supposed to be thinking about). Anyway -- we've got a lot of great writers on this board with a lot of really nuanced insight into the many aspects of dealing with celiac and the way it totally reconfigures one's life -- not just diet and body, but relationships and even philosophical and political perspectives on how to live in the world, eat in the world and be in the world.

What if we were to put together a collection of essays, write up a book proposal and shop it around to publishers? The proceeds from the book could go to celiac research. I imagine that, since the NIH is about to launch this awareness campaign there's about to be a very big market for all things related to celiac, so it could be a very good way to raise money.

I'm definitely thinking like a scholar here (wish I had this much confidence about publishing my own research) -- but I've got editing experience and such. There's got to be someone on this board with publishing connections outside the academic presses......

Link to comment
Share on other sites
DingoGirl Enthusiast

I LOVE this idea.......I can be in charge of the my-brain-was-ruined-by-celiac-and-I-went-nuts category......

:)

Link to comment
Share on other sites
Turtle Enthusiast

You guys are so fun!

Link to comment
Share on other sites
2Boys4Me Enthusiast

Gluten-Free Chicken Soup for the Celiac Soul?

Link to comment
Share on other sites
Guest BERNESES

Oh my gosh- these are all such GREAT ideas.

Eleep and Chelsea- Ditto on the Sig Ep thing. I don't think they CAN breathe without beer. We have a local chapter. Maybe I could get them to do a "gluten-free challenge" for charity.

Eleep- Someone on here...mvaught I think is also in academia and had the same idea! It's a great one and many people volunteered to write essays but I haven't seen her around in awhile. Maybe we could revive that idea too! DingoGirl- you're only crazy in the BEST way possible!!!!!!!!!!!!!!!!!!!!

Gluten Free Chicken Soup for the Celiac Soul is awesome too!

Link to comment
Share on other sites
DingoGirl Enthusiast
Gluten-Free Chicken Soup for the Celiac Soul?

: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.... ;)

Link to comment
Share on other sites
amybeth Enthusiast

What about all of those "BIGGEST" records:

Create/bake the world's largest gluten free pizza - wedding cake - pot of chili - bowl of macaroni , etc. etc.

People in the community could purchase a plate full........................Call Ripley's and the world record book, etc.............get word out......

OR an eating contest:

gluten-free Pie eating contest -- (or pie throwing!)

Again purchase your entrance fee...................................

OR an awareness dinner...........you know like those charity dinners that people pay $$$$/plate for.

Get celiacs and non-celiacs to buy plates, have a HUGE gluten-free meal and a speaker......

In any of these, you contact the local media, tv, newspaper, life style magazines and have them cover the event?!

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Help Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to SuzanneL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    2. - SuzanneL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    3. - Scott Adams replied to Braver101's topic in Coping with Celiac Disease
      2

      Constant sweating with celiac disease

    4. - Scott Adams replied to Julie Riordan's topic in Traveling with Celiac Disease
      2

      Any ideas for travelling

    5. - trents replied to Julie Riordan's topic in Traveling with Celiac Disease
      2

      Any ideas for travelling


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,493
    • Most Online (within 30 mins)
      7,748

    Greensandtea
    Newest Member
    Greensandtea
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
    • Scott Adams
      I'm sorry to hear about what you're going through. It must be really frustrating and uncomfortable. Have you talked to your healthcare provider about these sudden sweating episodes? It might be helpful to discuss this with them to rule out any other underlying issues or to see if there are specific strategies or treatments that can help manage this symptom. Additionally, staying hydrated and wearing breathable clothing may provide some relief. 
    • Scott Adams
      I am not sure where you are going, but we have articles in this section which may be helpful: https://www.celiac.com/celiac-disease/gluten-free-travel/ 
    • trents
      There are supplements available that can help breakdown minor amounts of gluten such as you might experience with cross contamination when dining out and you order gluten free items from a menu. But they will not help when larger amounts of gluten are consumed. One such product that many on this forum attest to as having helped them in this regard is GliadinX. The inventor of GlidinX is one our forum sponsors so you should know that.
×
×
  • Create New...