• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

I Want To Be The First Celiac To.....
0

34 posts in this topic

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!!!!

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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......

0

Share this post


Link to post
Share on other sites

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...

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites
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:

0

Share this post


Link to post
Share on other sites
Ads by Google:


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.)

0

Share this post


Link to post
Share on other sites
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!!!!!!!!!!!!!!!

0

Share this post


Link to post
Share on other sites




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?

0

Share this post


Link to post
Share on other sites
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!!!!!!!!!!!!!!!!!!!!!

0

Share this post


Link to post
Share on other sites
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

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
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?

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
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!

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites
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:

0

Share this post


Link to post
Share on other sites

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......

0

Share this post


Link to post
Share on other sites

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

:)

0

Share this post


Link to post
Share on other sites

You guys are so fun!

0

Share this post


Link to post
Share on other sites

Gluten-Free Chicken Soup for the Celiac Soul?

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites
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.... ;)

0

Share this post


Link to post
Share on other sites

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?!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,317
    • Total Posts
      935,450
  • Member Statistics

    • Total Members
      64,973
    • Most Online
      3,093

    Newest Member
    jocuen
    Joined
  • Popular Now

  • Topics

  • Posts

    • Once your tTg is in the normal range, and it's only 1 point away from that, that would be considered excellent results.  tTg just has to be in the normal range to be called a success.  The number you want to be as low as possible within the normal range is the DGP or AGA testing, as that tests for dietary compliance.  This is why it is a good idea to run both tests because it gives a more complete picture.  But with these results I would say you are doing an excellent job with the diet!
    • I started a topic a couple of weeks ago about my type 1 daughter with a ttg iga result of greater than 100 being suspected of having celiac.  She saw the GI and has her biopsy scheduled for this coming Tuesday.  Seems like there is no doubt that it will show celiac but we will know soon.  I have started thinking about some of the symptoms that I have had and before my house goes gluten-free would like to test and make sure that I am not testing positive for celiac as well.  My symptoms are always tired--easy to write off--been really constipated and bloated which is a relatively new phenomenon for me.  Sometimes I get tingling in my legs/feet but that hasn't been too bothersome.   My primary care doctor tested my ttg igg which was 3 (<6 is negative) and ttg iga was <1 (<or =4 positive)  It doesn't look like he ran an immunoglobulin a test to verify that I am not immunoglobulin a deficient   He ran a cbc that showed that my MCH was high (34) indicating that I could be deficient in B12 or folic acid--I rarely drink so I don't think that could have skewed the results.  Could this be indicative of anything?  My doctor just said all my labs are good.  Do you think this rules out celiac for me or would you try to do further clarification/testing? Thanks!
    • Hi all, my TTG/iga came back. It was 4. 0-3 is considered negative and 4-10 is weak positive.  In January it was 12 and before my endoscopy in October it was >100. it plummeted those first 2 months but seems to be taking more time to get lower. Should I feel optimistic? I guess 4 seems ok. 
    • Yes, i was 230 lbs upon diagnosis. My crp had been high for over 10 yrs. The first year i lost 70 lbs of water. Then i started to realize my continued irratic gi problems were more intollernces from processed foods as well as things like dairy and legumes. I went on an elimination diet and lost 20 more lbs. I finally stopped at 135 lbs which was still healthy weight, not that i had seen it until high school. Check your folic acid. Just found i am positive for one of the MTHFR genes meaning i cannot convert folic acid, which i lost stopping processed food, so i take 3000 mcg l-methylfolate daily. This is improtant because the body needs to detox all the gluten and chemicals i stored undiagnosed so when that was blocked i developed terible nerve pain. I am 10 years clear and things are amazingly better. I am finally adding in foods i could not tolerate like avacados and turkey. I had a pill cam and colonoscapy this year and there is no visible damage like there was 10 years ago. I think it was my clean diet and time to heal. I should have had a full vitamin panel when diagnosed but had no follow up advice except stop gluten. Am on d3, k2 as well. L glutamine helped heal my gi and d ribose gave me some blood sugar stability. I get these at amazon, NOW brand. My d3 is blue bonnet since its fish not lanolin. My k2 and l methyfolate is life extension. It is a long journey but it has become normal to live gluten free and my diet is so much healthier i think my longevity is increased because i have to eat this way. Plus the arterial sclerosis i had 10 yrs ago is gone, cleaned by my body and food. Well wishes.
    • Thanks for the well wishes Jmg. It appears that you & cycling lady think the sugar maybe our issue, let me clarify that's not our issue for it is manifesting as one of our additive intolerance exposure symptoms. One both my son and I have discovered over 2016. It's not a sugar crash type or a gi symptom in our case . But excellent info for consideration for others. My concern was about additives not listed on a label which is currently not required by regulations and the havoc it can cause the consumer .It's a clear cut symptom we get when exposed to a corn derived additive. At this juncture we are possibly sensitive to a highly processed flavor or coloring from a source other than corn that would be helpful to know what that source is per label  . That's where transparency in labeling would be helpful to me and others like me. The links I included on my post reflect concerns by others out on the web  to this concept. The food diary is helpful and has been to us in discovering these sensitivity issues, but not ideal when not all additives are labeled. the label says 100 percent juice but my body says otherwise . I am well aware from personal job exposure that the food industry is not required to list every ingredient particularly if it is not a top 8 allergean which is why I went look for the info to share. As you both pointed out and maybe even helped to bring to light the importance of sugar labeling my dream is to see it a step further with additives.      
  • Upcoming Events