Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Cbs News Report
0

19 posts in this topic

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

0

Share this post


Link to post
Share on other sites


Ads by Google:

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!!!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites




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."

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

Lily

0

Share this post


Link to post
Share on other sites

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)

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Hi All

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

Thanks.

Celiac Ambassador

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,654
    • Total Posts
      921,620
  • Topics

  • Posts

    • Any place you know of to find more info? Seems like I am still in so much pain/bloat, I am not even sure if I would pick the right 5 foods!
    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
    • Yes please, that'd be awesome Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps. Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure. One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems? Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed. Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.
    • I don't have a lot of faith in the allergy testing naturalpaths do. I had them done, but really it wasn't very helpful. Foods that were okay on the blood work- I was still having obvious reactions to. Skin testing through an allergist didn't show up food allergies either. I agree the food elimination diet is a better way to go and doesn't cost a bunch of money. I did a whole 30 diet a while back that could have been helpful if the foods I reacted to were corn, dairy,  soy, grains and sugar- but I react to more than that.  I do need to do a major elimination diet- just haven't gotten up the willpower yet.   
    • Quick search gave too many responses to TGI Fridays but none to TGI Fridays Buns (or similar) so... I was talking with my sister-in-law (Gluten Intolerant) and she spoke highly of a pre-packaged bun from Fridays. I was hesitant but she gave me one (apparently you can buy them from the restaurant?) and I tried it. Since I'm slow to react I won't know about gluten for a bit but I can definitely say it is the closest to "real" I've had in years! Spongy, doesn't crumble while eating a sandwich and tastes good. Color me impressed! I tried to determine the manufacturer or if Fridays actually makes them but I can't locate anything worth pursuing. Anyone have information on this? Thanks in advance.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,654
    • Most Online
      3,093

    Newest Member
    bentcreekmom
    Joined