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. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      9

      My only proof

    2. - knitty kitty replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    3. - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

    4. - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    5. - trents replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      ttg iga high (646 mg/dl) other results are normal


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,355
    • Most Online (within 30 mins)
      7,748

    tealangel09
    Newest Member
    tealangel09
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • NanceK
      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    • trents
      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
×
×
  • 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.