Jump to content
  • 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:
    Support Our Content
    eNewsletter
    Donate

Awareness Month


2Boys4Me

Recommended Posts

2Boys4Me Enthusiast

Mid-way through Celiac Awareness month and I haven't heard a peep about Celiac either in the paper or on tv/radio. CBS has all the Breast Cancer awareness month stuff happening from time to time, little 15 second psa's, but I guess it's a "sexier" disease.

I pitched an awareness story to the medical reporter (and all the assignment editors) in the newsroom where I work, and even THEY haven't done a story. I work evenings though, and the story meetings are during the day, so I guess I need to be a bit more "in their faces" about it.

I was sort of hoping there would be a mass letter-writing campaign or something to try to get Kellogg's on board with gluten-free, but I guess not. All my local Celiac association is doing is having a gluten-free pizza and ice cream day.

I guess I'll bug the medical reporter when I go to work tomorrow afternoon.


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



Celiac.com Sponsor (A8-M):



jenvan Collaborator

i was thinking of the breast cancer campaign recently. it is everywhere! if we could get a similar campaign going.... :) you can buy designer jeans, post-its, jewelery, cds, food--all that is pink and splits proceeds with bc research.

jerseyangel Proficient

That would be great if we could get a campign going to bring attention to celiac disease. Ideas anyone?

redheadheather Explorer

I recently emailed all our local TV stations and radio stations. So far... nothing. Most of the coverage is BCA. I'm hoping at least one of them will do a little something next week or so.

[crosses fingers]

celiac3270 Collaborator

It seems like every month is celiac awareness month--first I hear June, then it's September, now it's October--I can't keep it straight anymore :lol::P

Guest Viola

Global TV in Vancouver Canada has had a couple of very good TV ads for Celiac awareness month. But we are on satillite TV and that's the only one that I've heard.

2Boys4Me Enthusiast

Viola, I think in Winlaw you can get CTV Calgary, that's where I work. (Look for my name on the credits Friday!) I didn't see the medical reporter today, but will definitely ask if there's anything in the works for the next couple of weeks.


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



Celiac.com Sponsor (A8-M):



floridanative Community Regular

I sell promotional products and have many times sold custom lapel pins for clients. Maybe we need a pin for celiac disease. Could be a gluten-free or NG (no gluten) in a neat design - I think celiac disease would make people think of regular celiac disease's plus many people who are gluten free don't have celiac disease dx. For NG we could have the no symbol (like smoking symbol) and a big G inside. Other ideas? It needs to be something that will prompt people to ask us what the pin means.

Tiffamy M.

Guest Viola

There already is a lapel pin for Celiac. I have had one for years, got it through the Canadian Celiac Association. It's very attractive.

Guest Viola

Linda, I do get CTV Calgary and watch it quite frequently, including the news as we have a daughter that lives there. Which program will you be on?

floridanative Community Regular
There already is a lapel pin for Celiac. I have had one for years, got it through the Canadian Celiac Association. It's very attractive.

<{POST_SNAPBACK}>

Thanks Shirley! Do you mind posting their website? I'm not familair with it.

Tiffany M.

p.s. never mind. I found the site and they don't have the pin listed in the products for sale. It must not have sold well.

Guest Viola

Hmmm ... I bought mine about 15 years ago. It seems to me that several years later there was a problem with the logo they used. It's a gold wheat shaft in a circle with a line through it. There might have been a copy rite problem on it.

Which means ... someone should design and produce a new one :D

2Boys4Me Enthusiast
Linda, I do get CTV Calgary and watch it quite frequently, including the news as we have a daughter that lives there. Which program will you be on?

<{POST_SNAPBACK}>

OH NO, Viola!! :lol: I am not ON tv, I am strictly behind the scenes getting everyone else on. I direct the late news 4 nights a week (Th-Sun). I am bossy by nature,so the job suits me just fine, I tell someone to do something, and he has to do it, because that's his job...to listen to me! For the six o'clock news, I am a production assistant, counting out of stories, calling supers in, etc.

If I do my job properly tonight, the credits will hit about 6:56 or thereabouts. (Of course, the anchors have to co-operate, too much chatter and we might have to drop credits.)

"See you" at 6.

Guest Viola

Okay, will look for you .. that's five my time :D Look for your name that is ... Hmm, does it come under bossy ? :lol: Just kidding.

floridanative Community Regular
Hmmm ... I bought mine about 15 years ago. It seems to me that several years later there was a problem with the logo they used. It's a gold wheat shaft in a circle with a line through it. There might have been a copy rite problem on it.

Which means ... someone should design and produce a new one  :D

<{POST_SNAPBACK}>

I agree! I could see there being a problem with the wheat symbol - has law suit written all over it. I'll have to think about the design. At first I thought the no symbol over a G was great but I don't want people to think I'm an athiest.

Tiffany M.

Guest Viola

Yes, and we can have rice, corn, millet etc. and that really is included under the Grain label.

2Boys4Me Enthusiast
Okay, will look for you .. that's five my time
Guest Viola

Hi Linda .. I watched the credits roll yesterday, and there you were, big as life :D Good for you ... How is it you are the only female? :rolleyes: Do you get to boss all the males around? :lol:

tiredofdoctors Enthusiast

I really like this idea! I like the emphasis on Gluten-Free awareness -- I am VERY sympathetic to celiacs, but I am only gluten intolerant -- I have gluten ataxia. (Did I just say ONLY gluten intolerant?????) At any rate, I think that it's important to have Celiac awareness month, because it is a much larger problem than most people think (or don't think is the actual problem). We need to get the word out. Can you guys direct me to a website where I can get some statistical information? My next door neighbor and friend is a reporter for the local news here -- now that Breast Cancer has had its race for the cure walk/run, they're dry for health news right now. If I can present statistics (fairly soon), there's a good chance they'll run it.

I can't get back to the former messages without losing what I've written so far (I'm hating my computer right now), but whoever does the promotional items, you're bound to be creative! I think you should take the ball & run with it. Depending upon cost (& our resources -- sick people are poor!) I'll buy as many as I can and pass them on to local health food stores, etc. In fact, I'm wondering if chains, such as Whole Foods Market and Wild Oats would start carrying them -- it certainly would help to promote the fact that they have gluten-free products if they were at the cash registers. Non-celiacs would pass the info onto their celiac friends -- and maybe even start to become a little more informed. AAAAAAHHHHHHH! (that's the chorus singing the angelic sound) :P For that matter, even Kroger co. Our Kroger has a LOT of gluten-free products in their health foods section. I think this is a really good idea.

Talk to you guys soon . . . . Lynne

CeliacMe Rookie

I heard that Victoria Beckaham ("Posh Speice") has celiac disease, is that true? Also Emmy Rossum (from "the day after tomorrow" and "the phantom of the opera"). Maybe we could write fan mail begging them to do something to raise Celiac Awareness? I will write them if you guys do too!

tiredofdoctors Enthusiast

When you find out for sure, I'll write, too . . . Lynne

jenvan Collaborator

Lynne-

for stats and great info, go here to the Univ of Chicago Celiac program. Look at these fact sheets...one of them has a ton of stats on it.

Open Original Shared Link

jerseyangel Proficient

jenvan, Thank you for that link--it was great! Also, just last night, the CBS station from Philadelphia had a piece on Celiac on the local 11:00 news!! I could hardly believe my eyes. It featured a local woman with celiac disease, a Dr. from Bryn Mawr Hospital in Phila. and shots from Whole Foods.

jenvan Collaborator

jerseyangel-

that's great! those surprises are always nice!

2Boys4Me Enthusiast

Today I sent a letter to Kellogg's explaining that gluten free was not a small, niche market as they may think and that when one person has celiac disease, that means a whole family can no longer buy their product.

I ended it by saying that I and tens or maybe hundreds of thousands of other people were looking forward to buying a gluten-free, reasonably priced package of Kellogg's Rice Krispies and Corn Flakes soon.

Like next week, so get cracking! ...but I left that part out of the letter.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    2. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    3. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,864
    • Most Online (within 30 mins)
      7,748

    Jojo3
    Newest Member
    Jojo3
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.