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VegasCeliacBuckeye

Response I Got My From Alexis Stewart

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This was my last email to her, sent today. I think I came off mean in the one before, because I was angry, so I apologized in this one. But I just don't think she gets it, and I think you are right, they want the promotion for it, so there isn't going to be a sincere apology (that PSA on their website is more of a "sorry YOU took it that way" than "sorry we said that") Older email at the bottom, like most email formats.....

I wrote today:

I have not seen anyone post a letter that they sent you that was ignorant and rude. I am sure they would not share it with everyone though. And I am sure you got some like that, but they were all not like that, and I don't feel like mine was...... And I can only speak for myself, but I do not WANT you to have fertility problems associated with Celiac Disease, I simply hoped that you would consider getting tested SINCE that is one of the symptoms for some women (including myself). Some women have several miscarriages. Some can't get pregnant. I apologize if that came across wrong, because I did not want it to. It was a sincere suggestion. There are a lot of angry people out there who have fought hard to finally get diagnosed so they can fix their bodies and live healthy lives. I think those are the people who are so angry with you. I honestly wish you the best, I hope you can "hear" that in my words....Tiffany

whatever with alexis and jennifer <whateverradio@gmail.com> wrote: your ignorant and rude email responses (which have also been posted to the internet)

I guess the ignorant and rude emails I received were not also posted

you guys are really good at getting positive attention headed your way!!

On 8/14/07, whatever with alexis and jennifer <whateverradio@gmail.com> wrote:

already been pregant once, so I guess that's not my problem, although the celiac community seems to want it to be

On 8/14/07, Tiffany XXXXXXX <tiffanyXXXXXXX@yahoo.com > wrote:

FYI- I saw the show recaps. And I read the internet postings. No one is "blaming" you for "what is wrong," rather, they are upset about what you said, and your ignorant and rude email responses (which have also been posted to the internet). Even Celiac's joke about their diesease, but when confronted by someone who is offended, they apologize. You seem to have missed the point. You did do one thing though...I had no idea who the heck you were before all of this, and now I do. Guess you won there......hope you will consider testing for Celiac disease since it effects fertility in a lot of women (like me) and I understand that this is something you struggle with. Best of luck to you, Tiffany

whatever with alexis and jennifer <whateverradio@gmail.com > wrote:

you can log onto our show recaps from 8/7 and 8/10 if you like

i think people want to "blame" someone for what is wrong, and last week the closest anyone with celiac disease could get was jennifer and me

On 8/13/07, Tiffany XXXXXXXX <tiffanyXXXXXXXX@yahoo.com > wrote:

I heard that you were bashing those that have to eat Gluten Free. I have Celiac Disease and have to eat Gluten Free. My grandmother died from Celiac Disease. This is a serious disease, and I honestly hope that the information that I got was incorrect. Please tell me this isn't true, that it is just some kind of bad internet rumor....you wouldn't do that would you??? Tiffany

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Ok, so I got a little excited in light of all this Alexis Stewart stuff. The least she could do is own-up to being too quick to judge the necessity of gluten-free lifestyle for some. Here is what I sent:

Dear Alexis and Jennifer,

I have been following the gluten-free ruckus you started for the last several days. I have to say when I read the New York Times article about gluten-free offerings in NYC I was thrilled. As the mother of a child with Celiac Disease who aspires to be a Broadway actress, the last thing we need is someone dismissing gluten-free as a fad or a made-up necessity. I even sent the New York Times a letter of thanks for taking the time to have such an article. It will be a pleasure when we finally visit New York and know there are safe places I can take my family to eat. In fact, every time we go out to eat and my daughter is served something that doesn

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Any person who wants to eat gluten free should be able to eat gluten free.

The Celiac, DH, and gluten intolerant community should be supportive. We medically need to be gluten free, and we support any person trying an elimination diet to better their health.

Anyone discussing some one else's eating choices is overstepping the bounds and intruding a person's rights in a private matter.

We do not need to carry around a doctor's note for permission from Ms Stewart for a gluten free meal. If she wants more recipes than she should take advantage of the internet, library, bookstores and ask her family and friends.

There really is no point going any further trying to educate Ms. Stewart. We can just hope this controversy has increased celiac disease, DH, GI awareness.

What do the Autistic Awareness/ Autism speaks people trying the gluten-free/CF diet think about this?

L.

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Fiddle-Faddle

While I would deffinately agree that Celiac is not the worst thing in the world to have...I would not agree that it is just a minor pain. For some of us our whole lives and health have been completely wrecked due to this disease. I mean we are talking about some serious issues for some...lymphnode infections or cancers, extreme intestinal issues...for some to the point of complete shutdown, skin infections, so many things I cannot list. But, though for some it's a minor pain in the butt...for others it's much worse.

I mean I would not say having Pneumonia is the worst thing in the world either...but if left untreated people die from it. I look at it this way...for someone with Cancer facing certain death, a look at someone who has an HIV diagnosis is nowhere near as terrible...because they at least have a chance to live with proper treatment. So for those who don't have bad issues with this disease it's easy to shrug and say "it's not so bad" but for those of us who have had to face cancer testing, biopsies, skin biopsies, and much worse it's more of a big deal I guess.

Thanks

Dahlia

Umm---I haven't heard of Alexis Stewart either. Who is she?

And I don't know what she wrote or said that prompted you to say that she has a deficient learning curve. Could you please post that?

I'm feeling a bit dumbfounded here, because for months I have been telling the friends I suspect of being celiac or gluten-intolerant that it is not the worst thing in the world, that it is a very healthy and wholesome diet, and that I have had very little difficulty with it.

Shortly after my diagnosis, I was feeling pretty sorry for myself. Then a friend told me that his former nanny's child had been diagnosed with a terminal illness. Then there was a tragedy a few miles from me, where 2 of 3 3-year-old triplets and their father died in a horrific freak highway accident. Then one of my colleagues gave birth to a stillborn child.

I'm sorry to go against the popular opinion on this thread, but I've gotta agree with this Alexis person, whoever she is--following a gluten-free diet to me is occasionally a pain in the butt, but not the worst thing that ever happened.

I think that you have probably been through a lot more difficulty than I, as you were symptomatic for so many more years before diagnosis than I was, and perhaps that might--just might--have clouded your judgment on how your words might appear to others.

I'm sure it was cathartic to write what you did--but to my uneducated ears (remember, I have no idea what she said that sparked this), it sounds like she may have been ignorant, but that the viciousness was on your side.

I don't think you can educate people about celiac with harangues like that. I'm not doubting a single word that you wrote--but I think expressing years of pain, anger, frustration, etc., and aiming it at her as though it were her fault is likely to have the opposite effect of what you want. When you react to ignorance with rage instead of patience, you risk coming off as unbalanced--and then, even though you are correct, the credibility of your message --and that of the next person who tries to explain it--is lost.

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Bronco, I wish I could kiss your feet! :lol: You rule

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