Jump to content

  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

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? ;)

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

Celiac.com Sponsor (A8-M):


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

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

Celiac.com Sponsor (A8-M):


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!!!

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      0

      How Ancient DNA May Explain Why Celiac Disease Became So Common (+Video)

    2. Russ H
      - Russ H replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Coeliac or not coeliac

      Do you have the standard range for the test results you received? A level of anti-tTG2 antibodies at least 10x the standard range is almost certainly (>98%) due to coeliac disease. Moderately raised levels can be caused by other conditions as well as coeliac disease. Accuracy of the No-Biopsy Approach for the Diagnosis of Celiac Disease in Adults...
    3. Wheatwacked
      - Wheatwacked commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      New Study Reveals Hidden Gut Damage in Celiac Disease—Even Without Gluten (+Video)

      After reading the study on Mucosal reactivity to cow's milk protein in coeliac disease I stopped eating processed foods that have milk as an ingredient. Though Gluten Free, "in a fraction of coeliac patients, Cows Milk protein challenge may induce an inflammatory reaction of the same magnitude, as did gluten challenge". After three months my lower belly...
    4. Wheatwacked
      - Wheatwacked replied to Ginger38's topic in Coping with Celiac Disease
      6

      The Struggle Has Overtaken Me

      Hi @Ginger38, By now you know that these things improve without gluten. I once saw an interview with a corporation executive where he proudly declared that his wheat products are more addictive than potato chips. Dr Fuhrman (Eat to Live) said find foods that are friendly to you to be friends with.
    5. cristiana
      - cristiana replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Coeliac or not coeliac

      Hi @CC90 Ah... that is very interesting. Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time? I could be wrong, but I would not be at all surprised if they find something on the next attempt. Coeliac damage can be very patchy, as I understand...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,198
    • Most Online (within 30 mins)
      10,442
    kay rose
    Newest Member
    kay rose
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Russ H
      Coeliac or not coeliac

      By Russ H · Posted

      Do you have the standard range for the test results you received? A level of anti-tTG2 antibodies at least 10x the standard range is almost certainly (>98%) due to coeliac disease. Moderately raised levels can be caused by other conditions as well as coeliac disease. Accuracy of the No-Biopsy Approach for the Diagnosis of Celiac Disease in Adults: A Systematic Review and Meta-Analysis It is possible to have latent or early stage coeliac disease without histological changes visible by microscope. As has been suggest in this thread, if the repeat test comes up negative and serology is high, request an HLA genetic test from your specialist. Only 40 % of the population carries an HLA gene variant enabling the development of coeliac disease - if you test negative for this, it is quite unlikely that you have coeliac disease.  
    • Wheatwacked
      The Struggle Has Overtaken Me

      By Wheatwacked · Posted

      Hi @Ginger38, By now you know that these things improve without gluten. I once saw an interview with a corporation executive where he proudly declared that his wheat products are more addictive than potato chips. Dr Fuhrman (Eat to Live) said find foods that are friendly to you to be friends with.  
    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Coeliac or not coeliac

      By CC90 · Posted

      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
      Coeliac or not coeliac

      By Wheatwacked · Posted

      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
×
×
  • Create New...