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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748

    Blough
    Newest Member
    Blough
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.