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Awareness


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#31 coeliacinfostand

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Posted 01 July 2005 - 07:09 PM

The wording and pictures from the other pamphlets I hand out is on the site:

http://www.coeliac.org.au/index.htm

Alan
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#32 Guest_mlwaller_*

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Posted 01 July 2005 - 07:26 PM

Thanks Guys, Jen, That letter is an excellent example, and Alan, those sources were great. I have already ordered pamphlets for distribution around my area. Tonight I am starting on informative "starter packets" for the local family practice doctors, most of these have become family friends over the years, lol. Planning to start my letters to previous doctors tomorrow. thanks again.
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#33 coeliacinfostand

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Posted 02 July 2005 - 12:02 AM

There is also a PowerPoint presentation aimed at General Practicioners (Is that what you call them in the US?) at:

http://www.coeliacre..._Audit_Tool.pps

This presentation has been used to educate GPs (by professional Gastros) as an introduction to the GESA pamphlet:

http://www.gesa.org....liac_A4Card.pdf

I have turned it into a flip chart presentation (printed it in colour 2 sides of the paper, plastic laminated it, and put it in a 4 ring binder. I have loaned this to several doctors who have wanted to learn more.

The have thanked me for the loan. Do not know how effective it was. Something may have been absorbed by them. A couple said they had photocopied it. That is probably a good sign.

Alan
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#34 jenvan

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Posted 11 July 2005 - 06:06 AM

Thanks for the info Alan. I think I'm going to put a brochure together for the doctor letters, rather than the full 8 1/2 x 11 sheets I had originally, which I feel are more likely to be passed aside.

BUT-update on me. Anyone heard of Marsh Supermarkets? They are one of the large midwest chains, and headquartered in Indy. I am meeting with their dietician, head of wellness programs, to discuss carrying more gluten-free products in their stores. I am also hoping to make a pitch for each of us to team up and get a story in the paper. Mutually beneficial--good publicity for Marsh, and great highlight for Celiac too. The timing is great, b/c she has been looking for more gluten-free foods, and trying to figure out how to get the word out to Celiacs. Talk about providence ! I have high hopes :)
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~~~~~~~
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gluten-free since Feb 2005
dairy-free

#35 coeliacinfostand

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Posted 11 July 2005 - 02:48 PM

According to the latest ANZCRF newsletter.
1 half of all Fins with Coeliac Disease have been diagnosed.
1 in every 8 Australians with Coeliac Disease have been diagnosed
1 in every 20 Americans with Coeliac Disease have been diagnosed
In Finland all the Petrol (Gas) stations have gluten free sections!

I think USA is still in the very difficult stage of Coeliac Awareness.
I think Australia has recently entered a much easier phase of coeliac awareness as most people have at least heard about it but may not have considered that they may have it. They know vaguely about it, but do not know any of the detail. Many have friends with it and may have witnessed the improvement in their health.

I think that in the States coeliac awareness is very difficult at the moment, but it is going to get easier. Any awareness you promote now is going to be multiplied many times over the next few years.

It is hard to promote coeliac awareness working alone. Local support groups need to be inspired to carry out projects.

Local newspapers like to carry stories about local people who have been very ill but are now fit and well functioning people. They especially like "warm and fuzzy" stories about children, especially if there is a photo of them playing sport, or taking part in an activity they couldn't take part in before.

Alan
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#36 Jnkmnky

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Posted 30 July 2005 - 09:12 AM

I've begun dialoguing with Albertson's recently about getting some standard gluten free products on their shelves. They've been so nice and receptive to the idea. They asked for a product list of preferred gluten free items that I had suggested earlier. Can you imagine seeing Kinnikinnick bread, Tinkyada pastas, Foods by George, Envirokidz cereals and more at Albertson's? I'm beginning to invision a world where I don't have to shop at a "specialty" store for bread. OR pay $5-$6 dollars a loaf! While I was on the east coast, I discovered Tinkyada in the REGULAR stores. All of the local stores there had aisles dedicated to "specialty" foods. There was no WholeFoods for 100 miles. I like WholeFoods, don't get me wrong. But I'm not here on this planet to make them rich over a loaf of gluten free bread. For those who are interested in encouraging their local shopping marts to carry quality gluten free products, I would say try it. In my email to Albertson's, I mentioned Wal-Mart's efforts on behalf of the Celiac community and I think that got their attention. I told them that as the awareness of C.D. increases, a new customer base of Celiacs will be looking for a store that supports their needs. It's always best to snag those new customers first. They seem very interested.
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#37 mouse

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Posted 30 July 2005 - 10:35 AM

Good thoughts and good question.  As for myself--I actually have created a 4-fold plan to raise awareness locally where I live.  (yes--I really am a dork!)  I recently sent out letters to restaurants, and plan to send out more as well. 

The next phase I'm entering (I totally sound like a dork!), is writing letters to previous doctors (I've had many of them!), and sending along celiac disease facts sheets as well, in the hopes that they will make Celiac info available out in the lobby/waiting rooms with other health brochures and info.  Doctors are a hard group, harder than restaurants in some ways, because many of them have a great deal of pride in their knowledge base, and using consumer power doesn't work so well with them.  The letter I've written to my doctors tries to use that pride our our advantage--humbly asking them to rethink their paradigm of celiac, and acknowledging that they have great power to influence the community and individuals--and that we need their help.  I kept all my "annoyedness" at doctors to myself (like--years of being misdiagnosed!)

My third goal is to contact local grocery stores, praising for the few gluten-free products they have, discussing strong celiac community locally, asking for more products, and lastly, to try and work with local tv and newpapers to get the word out.  Next week I am meeting with a woman (b/c of work) from WFYI, our public tv station.  I plan on trying her for ideas too.

So far I've had some luck.  One of the restaurants took my thoughts to heart and made several changes to the location I wrote about. 

If these ideas don't produce great results, I plan on bungee jumping from Indy's tallest skyscraper during rush hour for attention, and then throwing stale wonder bread down on people's head.    :P

Hmmm....  I still want to make myself some kind of fab celiac t-shirt too.  Still working on that one...  :)

<{POST_SNAPBACK}>


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"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004
Allergies - corn, soy, casein, egg whites and wheat
Morphia Scleroderma
Osteoarthritis
Hypothyroid and Hperthyroid
Essential Tremors
Asthma
Migraines
Fibromyalgia - diag. in 1978 when they called it Fibrositis
PAD Peripheral Artery Disease
Angina and Atrial Fibrillation
Gluten Ataxia
Vitiligo
Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.
Ocular Myastenia Gravis

#38 mouse

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Posted 30 July 2005 - 10:39 AM

Hi Jen,

If you come up with a cute Celiac T-shirt, please let me know. In Arizona I wear sleeveless in the summer (or cap sleeves) and long sleeve in the winter. And I just don't like the ones that are for sale at Celiac. com. I would wear one of those around the house, but not out and about. And then what good am I doing as far as getting "inquiring minds want to know"? B) Armetta
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"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004
Allergies - corn, soy, casein, egg whites and wheat
Morphia Scleroderma
Osteoarthritis
Hypothyroid and Hperthyroid
Essential Tremors
Asthma
Migraines
Fibromyalgia - diag. in 1978 when they called it Fibrositis
PAD Peripheral Artery Disease
Angina and Atrial Fibrillation
Gluten Ataxia
Vitiligo
Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.
Ocular Myastenia Gravis

#39 Ruth

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Posted 30 July 2005 - 12:01 PM

I am writing an article on celiac disease for a regional parent's magazine. My deadline is Monday... should run in Oct or Nov.
I'm writing it as a thrid-party writer (not my own story...but rather reporting the facts and interviewing another celiac family about their story).
The editor was very open to the story idea!
The article is about 1,400 words plus a sidebar on sypmtoms, etc.
When it runs, I'll post the link to the publication.
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Ruth
Diagnosed 3/03 (Positive Biopsy/Negative Blood Tests)
Daughter dx 12/03 (Positive biopsy/Positive blood tests);
Two sons (Negative blood tests); One on gluten-free diet (6/04) ... cured his persistent, severe headaches.

#40 coeliacinfostand

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Posted 30 July 2005 - 01:40 PM

I have just read the last four posts in this forum. Makes me very happy to see coeliacs out there pushing things along instead of waiting for others to do it. Every seemingly small thing you do, does benefit the coeliac community as a whole.

Talking to food outlets about gluten-free. Even talking to the medical professionals may seem to be a waste of time, but if they hear it from you, then hear it from several other people over time, they may eventually decide it is worth researching it themselves. At this point you have to pray that they read modern information, and do not research old textbooks.

Anyone who promotes coeliac awareness in any way is not only helping others, but also helping themselves, by increasing the demand for gluten-free food, which in turn encourages retailers to increase the range of gluten-free they stock.

My local supermarket brings in several new gluten-free products every month. It gets better all the time.

I am always thankful that if I have to have a chronic, life long disease, I have been given coeliac disease, and not something else!
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#41 coeliacinfostand

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Posted 30 July 2005 - 11:47 PM

<{POST_SNAPBACK}>

I have found different doctors require different methods of approach.
Often I just approach the receptionist and ask if I can leave Coeliac Society pamphlets in their pamphlet racks. 90% of the time they give the OK. Other times they say they will have to check with the doctor, which is a golden opportunity for me to say "Can I ask him?". Once you see the doctor, they either know all about celiac disease, in which case they are happy to have the pamphlets, or they are a bit embarrassed that they do not know, in which case you can arrange to get more info for them. In one case the doctor had no coeliac patients and so required no pamphlets. I have kept revisiting him over the years, and the last time he said celiac disease was much more prevalent than he previously thought. I hope he is diagnosing a few himself.

I usually carry copies of articles on coeliac disease preferably from medical journals or medical organisations, that I can give to them if appropriate.

I visit most of the medical centres in my area once or twice a year on my way home from work, dressed in my dirty work clothes! Some may dismiss my advice because of the way I dress, the first they see me, but once they do get to know me they do respect it. I do this mainly to ensure that they do not think I am a medically trained person. My aim is to try to get them to read current medical journals on the disease.

Everyone needs to develop their own techniques for coeliac awareness. What works for one person doesn't work for another.
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#42 pixiegirl

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Posted 31 July 2005 - 03:14 AM

I just wanted to add this, in the beginning of this thread someone asked, if every 1 in 133 people has Celiac why isn't it more well known.

If I understand this correctly, this figure was derived from testing done at various blood banks (in think in the Carolina region, not sure about this bit), when people came to donate blood they asked them if they could run a test for Celiac and that 1 in 133 number are the results of that study. I'm not trying to question its legitimacy, from what I read it was scientifically done by a major Univ.

The point I am trying to make is this: Every 1 in 133 Americans has Celiac but the number of people that are actually diagnosed with Celiac is far different (not sure what and it was in the article I read about this blood bank study, closer to 1 in 400 maybe). So that's why awareness has to be raised because there are tons of people walking around with it and they don't know. (like most of us did)

My doctor told me that I did NOT have celiac, I'm going to use that letter and send it along with Celiac info to him. I changed to another doctor but he is still my mothers doctor and told her she doesn't have Celiac either, not she is not officially diagnosed but she is gluten-free and all her symptoms have gone away since going gluten-free. Just as an aside... my new doctor was born and educated in Spain and she knows all about Celiac.

Susan
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#43 coeliacinfostand

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Posted 31 July 2005 - 12:11 PM

[I]The point I am trying to make is this: Every 1 in 133 Americans has Celiac but the number of people that are actually diagnosed with Celiac is far different (not sure what and it was in the article I read about this blood bank study, closer to 1 in 400 maybe). So that's why awareness has to be raised because there are tons of people walking around with it and they don't know. (like most of us did)[/I]



One of the studies that came up with the 1:133 is at:

http://archinte.ama-...tract/163/3/286

Based on this figure ANZCRF* in their recent newsletter say that over two million Americans remain undiagnosed. What a market for the gluten-free manufacturers!
I do not think the newsletter is on their website. I have a hard copy of it.

*
http://www.coeliacresearch.com/

Interesting facts from this newsletter, which I have posted previously, are:

1:2 Coeliacs from Finland have been diagnosed.
1:8 Coeliacs from Australia have been Diagnosed.
1:20 Coeliacs from USA have been Diagnosed.

I believe it is very easy to purchase gluten free items in Finland.

If the 1:133 & 1:20 figures are used as the basis of the calculation this would mean that around 1:2660 Americans have already been diagnosed

Alan
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#44 coeliacinfostand

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Posted 02 August 2005 - 03:04 PM

If your Doctor is not convinced about the incidence of celiac disease compared with other conditions, get him/her to have a look at:

http://biz.yahoo.com...u167.html?.v=14

Except one word in the last paragraph should be corrected!!
For "Most" please read "Some"


also, an American Site listing the tests is at:

http://www.prometheu....com/210a10.asp

And an Australian page listing the tests is at:

http://www.coeliacre...esa_testing.asp

All good info when you doctor needs a little information.
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#45 gf4life

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Posted 19 August 2005 - 09:20 PM

What do I do to promote awareness??

Well, I am a big mouth and I talk about Celiac/gluten intolerance to ANYONE who wants to listen. I swear, I've met more people at Whole Foods who need information about gluten free foods than anyone in my entier town! I don't talk about it to people who are not interested, it is a waste of time. I also pass out information to anyone who wants it, as well as web sites, restaurant info, food lists, etc...

My son Ben (Teku on this site) has a "master plan". He comes up to me one day and says that his master plan is to get a job at McDonald's (hey, he's ten) and buy himself a Toyota Celia. I said to him, "you mean a Toyota Celica?" and he says yeah. I thought for a second and said that if you switched the last two letters around you would have a car that said "Celiac". He thought that was so cool and now he plans to do that. How is that for promoting awareness! Do you know how many people would see that on his car and ask about it, or even just think about the word and then have to go look it up! Maybe we should get Toyota to make a bunch of them and they could be like our flagship. :P

God bless,
Mariann
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~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children


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