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I don't know if anyone else heard the news report on the Adkins diet day before yesterday. but I was a little upset. They stated that some people who eat the lettuce wrapped hamburger act like the bun was poison. Well--duh!!!! To us the bun is poison. I guess we all need to have more education for the public. But it seems to me that sometimes when I mention the poison flours in a restaurant, eyes roll and no matter how diplomatic I am I get a negative responce. Has anyone else had this experience?? Shirley Whitley

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Bottom line Shirley, I think we need to educate everyone we come in contact with. I recently went to a Chinese rest and talked with the lady who took my order, she was very curious and asked me all sorts of questions, that was after I went to Life Grocery and talked to the cashier about Celiac there too. I had a great feeling, I felt like a couple more people found out about Celiac Disease!!!! Of course the next time I go out they may look at me like I am from another planet!!!

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Hi Shirley,

I guess some people have a hard time accepting that a "normal" food like a hamburger bun could be poison to someone. I am hoping that we can all make celiac disease a household word that everyone understands.

Mariann

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I was only recently diagnosed with celiac disease but so far have found nothing but interest from people who hear me say I have to eat gluten-free. I've found that the first thing they ask is, "are you on that new diet". I just say no, I'm on a new life style. And then I explain what I mean.

Lucy :D

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"Poison" is not a word most restaurant owners want to hear in association with their food. They get hot in a hurry!

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It seems to me that everywhere that I go, people are more than happy to help if they can. I'm always a bit shy about asking for a burger without a bun (thank goodness for an outgoing and supportive husband), but when it's mentioned that I have celiac disease people ask questions and want to know more.

I've never had a single negative response, well...just the one lady that my Mom yelled at since the girl said that she'd have to have my sandwich made the normal way and I'd have to pull it off the bun myself. Mom got a little excited and informed the lady (a tad loudly) that I was allergic and that it can't have touched my chicken...and then all was understood.

Anyway, I'm making a short story long, people are very understanding when they know that you don't have much of a choice in the matter. I suspect that any unpleasantness you've gotten because of it would be simply (as previously mentioned) because of the use of the word "poison."

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Shirley, I do know what you mean. Maybe it's because I have been dealing with these food allergies for over 50 years and have come across more people than a newly-diagnosed Celiac, but I, too, have had times when I ended up practically in tears after leaving the restaurant and not having someone understand.

As I am writing this I am thinking, why in Heaven's name would I think a waiter or waitress would understand this disease, when doctors are even uninformed about Celiac? That's why I like this board so much, because in responding I find out what I am really thinking and feeling, and I get new insights.

At this point there are two restaurants where I feel comfortable going, and I always order the same foods, but recently I did just that and ended up learning that a place I thought was safe, because I had previously tested the foods I was ordering that night, was NOT safe because they had hired a new cook, who smothered teriyaki sauce all over everything. I probably will not return there, because it was just too negative an experience and too disappointing.

Welda

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Hi All

We are Celiac Ambassadors taking our message to the unlearned about celiac disease. That's the only way the info is going to get across: by those affected with this condition.

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So right, Debmidge! I don't keep it secret, I tell everyone I know. The more people that know about it, the easier it will be for all of us.

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We just need to educate people about celiac disease. I e-mailed Oprah mag. to see if they would do a story on it. I didn't want to be in the story I am too shy but for those of you who aren't e-mail them and let them know how important it is. Maybe if they get a lot of letters they will see how important it is. If we can get oprah on our side a lot of people would know. She can really have influence on the way people think.

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Great idea KayJay!!! Anything Oprah endorses is as good as gold, I shall email them today. Thanks for the great idea!

Lily

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KayJay and Lily,

I also took the time to post this letter to Oprah:

"The celiac disease epidemic is growing rapidly. I understand that such a story would upset many of your advertisers, but beer, bread and cookies, destroys the intestines of celiac victims. Greed is keeping this epidemic under wraps, and spreading the needless suffering from coast to coast. To have any child suffer malnutrition, simply because of greedy industry, is insane in this day and age. I invite you to read the unfolding story of this epidemic on the message board at celiac.com. Thank you for your time.

Sincerely,

Thomas James Haller

Quintana Roo/TX/OR/NH"

I hoping it might get their attention. B)

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KayJay,

I also emailed Oprah yesterday! I think we should all email her alot and maybe they will pick up the idea just to get us to quit bugging them. My sister and mother are both diagnosed with celiac disease..I have a biopsy at the end of this month, in a months time we have contacted all relatives and let them know. I was clueless or just in denial when my mom asked me to get tested...I am so glad I did for once in my life, now I may have a better life.

I work for pediatricians and at first the jokes started that I couldn't eat this or that because of the gluten...well, I think it was just their fear of the unknown because now that I talk with them I find I am educating them everytime I bring something up. They still joke about it, but I think they are better docs for knowing this is a real disease not a myth....So lets keep telling all who will listen....

Kelly

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Hi All

I am not familiar with Oprah's website. Could you please post her email?

Thanks.

Celiac Ambassador

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Hi Debmidge,

Go to http://www.oprah.com/ and on the left side of the web page you will see E-mail us. Click on that to send an e-mail.

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Thanks for the link, Thomas. I went right to it and submitted my request.

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I am so excited that you guys e-mailed Oprah lets keep our fingers crosses!!! :)

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    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
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    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
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