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VegasCeliacBuckeye

Response I Got My From Alexis Stewart

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THANKS GUYS.

YEP, PATTI, I WAS DONE YESTERDAY BUT THEN WHEN MY FRIEND WROTE WHAT SHE GOT TODAY AND WHEN I GOT HOME ..THAT I COULD POST THE RESPONSE...I DID.

I'LL KEEP READING BUT NO MORE POSTING FOR ME.

REMEMBER ............JUDY HAS TO KEEP HER FRIGGING LEG UP OVER HER HEAD...BUT AS ALEXIS'S WOULD SAY.............IT'S JUST AN IN CONVIENCE....

NOW DON'T JUMP ON ME MODERATORS....LET ME HAVE MY LAST SHOT..............OK

I'M DONE...................................................PROMISE :(

JUDY IN PHILLY

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Part me of me thinks she is just doing it to drum up support and controversy for her show's ratings...

That's a really good point...

All the controversy is nothing but great publicity for this radio show. People in those positions are required to uphold certain images, and hers is one that clearly has nothing to do with compassion or sympathy towards others :rolleyes: Really, it's all about the ratings.

Maybe I'm wrong, but doubt it's actually her responding to or even reading the emails. I do like them though :)

It's unfortunate when celiac disease is misrepresented by the media, but most things are....

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This is the responce my friend got back..

Subject: My message back from Whatever Radio

Ms Stewart wrote--

i have read plenty and the emails I have gotten do nothing to make me sympathetic.

the writers too are uninformed and nasty, so if you want sympathy and help, I hope you are writing a different type of letter to your "senators and congressmen"

:blink::blink: I am shocked beyond words.

I suggest that your friend send her letter and that horrid response to the owner/director/board of directors/sponsors, etc. of the radio station that carries the show. For that matter, she could send them to her local paper and the local TV stations, and especially to Heide Collins at CNN.

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I have decided to send Alexis a copy of Dr. Green's book: "Celiac Disease, A hidden Epidemic" as an olive branch of sorts.

I understand where Fiddle Faddle is coming from as it pertains to education and the tools necessary to change a person's mind (I routinely advocate being nicer to ignorant restaurant employees and managers, it would seem hypocritical for me to do otherwise just becuase a person is a bloviating radio nuisance).

Regardless, sending the book is the "higher road" and I will take it.

BB

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I know I KNOW..I PROMISED I WOULDN'T COMMENT BUT............................

CHRIS....You took the words out of my mouth...

I was going to say...."Well, let's hear it for a gentleman taking the HIGHER ROAD!

CHRIS..I'M SO impressed with you. I knew you were a wonderful person from your posts...

Maybe you can make a differnece..

Thanks for 'taking the higher road'. You have a 'clean slate' as my shrink would say.

Hugs and Love

Judy in Philly

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I know I KNOW..I PROMISED I WOULDN'T COMMENT BUT............................

CHRIS....You took the words out of my mouth...

I was going to say...."Well, let's hear it for a gentleman taking the HIGHER ROAD!

CHRIS..I'M SO impressed with you. I knew you were a wonderful person from your posts...

Maybe you can make a differnece..

Thanks for 'taking the higher road'. You have a 'clean slate' as my shrink would say.

Hugs and Love

Judy in Philly

AND Cheers to you Judy, for bringing this to everyone's attention. I am sure it will make a difference.

Thank you Judy!

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AH, THANKS LISA.

yOUR A STRONG 'VOICE OF REASON' ON THIS BOARD.

WE THANK YOU ALSO

JUDY

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That's why I said, I would have rubbed the infertility in Nr. 1 in the first letter in. Doesn't she also have problems with that?

Yeah...thats what I was referring to...the infertility.

She had an article in People mag. last week. It seemed like shes pretty devastated by this and still trying everything to conceive. She desperately wants a child...her mom desperately wants a grandchild. I think she might be consumed with it....thats how it sounded to me when I read the article.

Thats why I say I dont think shes gonna care about anyone elses problems....shes much too selfish and shes all wrapped up in her own problems right now.

She seems bitter to me.

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Does anyone else find it slightly ironic that Alexis sent several replies saying how there are worse things, such as cancer (which ofcourse all of us agree); but when someone sends her an email telling her that they are in fact in remission from cancer they developed because of undiagnosed celiac, she still finds away to dismiss it!

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I am getting in on this at the tail end so I apologize if this is all old news, this is just so shocking to me.

I have followed Martha Stewart over the years and knew she had a daughter, but I didn't realize Alexis had her own radio show. Reading through her responses I am just speechless, how can somebody be so void of empathy and compassion, even after the info and facts are being laid out right in front of her?

Broncobux, I think your letters were awesome. When I get upset at something and try to speak my side I never can find the right words and most of the time I end up putting my foot in my mouth. You really articulated the important points so well.

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Broncobux, your letters are as awesome as you are. Since I have had dinner with you many times, I know you are not an angry young man. Just a very knowledgle one.

I am getting dagger looks from my hubby as he wants me on the couch with my leg elevated. They could not do the stents. My left leg is too far damaged. There is a possibilty that a stent in the right leg might help the pain, but there is no guarantees. I am scheduled for a stent on the 27th. He could not do the stent today as he has to go into a different location then they normally go into. I will have to go on drugs for the legs, which does not please me. They could not even plug the site they went into, as they usually do. So, I have a pressure bandage on until late morning (tomorrow). I had to stay flat on my back in the hospital for six hours before they would release me. Anyone want my scoliois pain from being on my back.

Needless to say, I am somewhat down as I was hoping I would finally know what the center of a Mall is like, LOL. Really I was so hoping for more energy and the stents were going to give me part of my life back. I get tired of going to bed at 8 pm because the pain has made me soooo tired.

I think that THAT woman should walk in many of our shoes. That is when we have the energy to walk. If she is having fertility problems, maybe she should try going gluten free. I know gluten causes miscarriages as many of us can attest to. Maybe gluten also causes infertility - I don't know.

Hubby says I need to say Bye.

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I agree with most of you that said that the diet is very adjustable (as I speak two after the initial fact). It has become second nature for me as it has for others.

If a person show a lack of preference for a certain gluten food item and makes reference of having a food allergy, fine. That fact may be dishonest and deceptive, but it is their choice and I have no control in their actions.

BUT it effects the waiting staff. When I have to opportunity to eat out in another city, I explain my "medical diet". Often, before I am even finished the waiter says "Is it an allergy", in a very non-challant manner. I quickly indicate that it much more than an allergy and I can become very ill.

Choosing food or not choosing food and referring to an allergy for the sake of preference, diminishes the seriousness of MY request when ordering gluten free. Now, that bothers me quite a bit.

Need verses Choice should be clarified. Gluten free fad diets may be beneficial to some, but don't cheapen my only option!

what do you find the best way to inform someone of your situation? is it still ok to say we have an allergy, or do we need to be more severe?

Keith Olbermann from MSNBC has celiac, right??

Someone should send this to him and see if he can put this on Countdown. Anyone watch that show?

Maybe she could be todays worst person in the world.

that would be great!!!

let me just say BB, that your first letter made me cry. I then went and read what she had said, and i got angry. i think i would have responded the same way. Bravo!!!

i do agree w/ FF though, that accusing words do not educate. they might encourage someone to pursue information...but obviously not her. but when an issue is so close to home, it is hard to keep emotion out of a response to painful neglect and ignorance.

what do we think about addressing her mother? not in an accusatory way, but rather in a "your daughter seems uneducated, let's change this" manner. maybe take the focus off the brat, and see if Martha will support our cause? that'll get princess to open her eyes, right?

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METTA

I'M SO GLAD TO SEE YOU POSTING BUT SO SAD THAT YOU ARE SO ILL.

I SO REMEMBER THOSE LONG NIGHTS A YEAR AGO WHEN YOU AND I WOULD TALK ON THE PHONE SOMETIMES AT 1:00 AM WHEN YOU WERE HELPING ME COPE WITH THE CELLUITIS. I NEVER HAVE FORGOTTEN THAT.

YOU WERE A DEAR FRIEND AND I MISS HEARING FROM AND ABOUT YOU.

I'LL BE KEEPING YOU IN MY PRAYERS.

LISTEN TO HUBBY AND GET THAT LEG UP...WISH WE WERE CLOSER AND THAT'S ME ALSO TONIGHT...

WHAT FUN WE 2 ARE??? :lol: ON OUR BUTTS MOST OF THE TIME WITH A LEG OR 2 UP IN THE AIR.

NITE AND HOPE YOU CAN SLEEP PAIN FREE.

JUDY

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i get the feeling that maybe alexis is going for a jerry springerish type of program. i am apalled at the last thing she wrote about not being sympathetic---and i probably spelled apalled wrong, but you know what i mean.

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Guest Doll

Frankly, all of this, as heartless and cold as Alexis Stewart is, does not surprise me. Sick people with certain chronic health issues are often marginalized and "hated" by lay society. And Celiac Disease is a disease/abnormal disorder. It is never beneficial for the body to attack it's own healthy tissue when exposed to a food protein. We are NOT normal, gluten free diet or not. We have leaky guts, we have an abnormal immune response that most people do not have. If you follow that 1 in 133 people have some form of gluten intolerance (including those not diagnosed and without symptoms), that is less than 1% of the population. If the numbers are even that high.

It's survival of the fittest. Those who are healthy don't care, don't want to care, don't want to learn, or don't want to hear about our diseases. Some diseases, such as breast cancer, do seem to get sympathy, but obviously Celiac doesn't fall into this narrow category. And many people do think that Celiac is a pain in the butt, but that the diet is not that bad. To me, Celiac is the least of my problems overall. But it is also very serious in that I may pass out from low blood sugar if it is not taken seriously by a server in a restaurant. I can see both sides.

Being a Type 1 (Juvenile) diabetic since I was a toddler, I have seen the looks of disgust when I have had to inject myself discreetly and someone caught me out of the corner of their eye. This person knew I was diabetic and not a junkie. Or when my blood sugar is low in public and I am shaking trying to pour glucose gel into my mouth on the verge of passing out. Nobody offers help, they just stare. People don't care about the struggles of others, as long as *they* are healthy. In fact, they may even take pride in implying they are better than you.

I never talk about or tell people about my health issues, and say I have a "gluten and casein allergy" like a peanut allergy, if need be. I say I have trouble breathing and my blood sugar drops. Most people can process that. Start saying that I have a "genetic autoimmune disease that can cause intestinal damage and cancer, when I eat gluten I puke and get malnourished....etc." and they look at you like you are insane.

I am scared if people think the gluten-free diet is a quick fix "cure all" trendy fad diet. Then we are all screwed. :(

I am actually kind of scared....:(

P.S. Those letters did say what we all feel, however. :D

My 2 cents.

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My response:

Alexis,

No, its not the worst thing that ever happened to someone, but its not merely a "pain in the butt" either as you label it.

First, I have to be conscious of every thing that goes in my mouth. This includes, but is not limited to: lotions (its on your hands and your hands go near your mouth), pharmaceuticals (drug companies love to use wheat starch as fillers), shampoos, conditioners, soap, toothpastes, mouthwash, shaving cream, tanning lotion, tanning oils, makeup, sunscreen, my beautiful girlfriend's mouth which I try to kiss daily (gotta makes ure she didn't just eat a pizza or some bread and have crumbs in her mouth), and of course, beverages and food.

I went 23 years of my life undiagnosed. My life from age 16-23 consisted of countless trips to the doctor, several trips to the E.R., over 1000 bottles of pepto-bismal and immodium AD, numerous wrong diagnoses and a skin rash associated with Celiac that was seemingly immune to every treatment my doctors could think up. Basically, my life was an "itchy-digestive-trauma-related hell".

It does not suprise me to hear of your ignorance and relative insensitivity to Celiac Disease. Afterall, you don't have it. you don't know anything about it and your remarks (like the one to me) emphasize that you are content with the embarrassing level of information you contain on the disorder.

Since you aren't likely to read those books that I recommended, I can summarize some of the main points for you:

1. Celiac does kill people. doctors are unsure of the exact number, but it is well known that treated, untreated and especially undiagnosed Celiac Disease leads to numerous auto-immune disorders and life threatening medical conditions, including but not limited to, intestinal lymphoma, stomach cancer, kidney failure, ataxia, heart disease and malabsorption. Celiac is also related and associated with Crohn's Disease, Fibromyalgia, Diabetes, Depression and Autism.

2. Those of us who are lucky to have been diagnosed usually live a healthy and vibrant life, but we will always have to be vigilant about what we eat, drink and goes in our body. A large number of celiacs who were diagnosed later in life are not so lucky. They often have a multidue of disorders like the ones previously mentioned. Personally, I know 3 people who are either confined to a wheelchair due to celiac disease, have extensive cardio issues thanks to celiac disease or suffer from neurological problems due to gluten ataxia. for these people, its not as easy as picking the right pasta or "wholesome" foods as you put it. Its not just about the diet, its about being incorrectly diagnosed for decades, with people thinking you are "faking" symptoms, or even as bad as having little to no energy to do simple tasks (and this is the way these people have always been).

3. Let's not forget about the dangerous task of eating out and eating at friend's houses. I'm sure you haven't had the embarassing problem of repeatedly using a restaurant's bathroom or worse - using your significant other's parent's bathroom because they don't clean and handle their foods as meticulously as you do and you wind up getting 12 hours of diarrhea and end up embarrassing yourself, your family and your signficant other simply because you ate something with wheat flour/starch or even soy sauce on it.

You can't go there, because you have never walked a mile in my shoes. Don't act like you know what I and my fellow Celiac sisters and brothers have been through. Don't act like its only " a wholesome diet" and "no processed foods". Please don't do that because you are embarrassing yourself. Not to mention how insensitive and callous you sound in the process. Our lives have been affected in many more ways than just food. I know that you think that a simple wholesome diet will make everything better and that cancer patients have it worse. We know they have it worse. Unfortunately celiac disease leads some of us to being those cancer patients. Unfortunately, celiac disease leads some of us to grave cardio disorders and heart conditions. And this happens even after we go on the Alexis Stewart "quick-and-easy gluten-free-cure-all-wholesome-food--that-doesn't-contain-processed-foods-diet".

Your ignorance regarding our disease is neither suprising or shocking (many health care professionals and providers know less than you do which makes insurance coverage for our disorder even tougher). However, perhaps my e-mail will encourage you to take the next step and educate yourself further about a day in the life the average Celiac goes through. Maybe then you can begin to comprehend how seemingly simple life choices and a suprising diagnosis is difficult to handle because it is lifelong and subsequent, normally mundane decisons are now necessary to living a symptom and pain-free (more like pain-light) life.

4. Tell me the next time you have to rely on some 20 year-old server to get your food exactly how you ordered it (clean pans, no cross contamination, steamed veggies, clean knives and clean chef's tolls that haven't touched other people's food) so you don't get sick for days and feel like crud for a week because of the gluten poisoning you got at a local chain restaurant. AND YOU HAVE TO DO THIS EVERY TIME YOU GO OUT TO EAT, GO TO A WEDDING, GO TO A BBQ, GO TO A FRIEND's HOUSE OR OUT TO LUNCH WITH YOUR BOSS. Its a hassle and a burden and it is lifelong.

I have heard some amazing things about your show and have even caught it a few times when I have had the chance (when I had Sirius - usually renting a car). However, you disppointed me first with the content of your show when you made your comments.

Furthermore, you insulted me with your e-mail response to my request that you educate yourself to assist your seemingly apparent deficiency regarding elementary Celiac basics.

Before you quickly and carelessly respond to one of my e-mails next time, try walking in my shoes a mile or so. Make sure you bring some pepto-bismal, you will need it.

Bronco

Great letter! Let us know if you hear any responce.

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They could not do the stents. My left leg is too far damaged.

Oh Metta, I was at first surprised to see you had posted since I expected you to be in overnight.

I'm so sorry to hear that they couldn't do the stent. :( Hubby is right--get lots of rest and keep the leg up. I'm thinking of you.

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I can't help but add this - how do we know Ms. Stewart DOESN'T have Celiac ;) I mean.. you can get it later in life and go YEARS w/o knowing it is destroying your system. Her response kinda sounds bipolar.. maybe her mind has been affected.

I am kidding of course.. but the reality is what I type is true. As you age, your intestinal track gets weaker and more permiable... so early detection is a key - if possible. Who is to say all wheat/gluten isn't poison to some extent in EVERYONE? I see increases in autism, increases in asthma, etc.... my kids are in remission on ADHD symptoms and asthma (ie. don't have it) because I took them off Gluten very early. How much better will my kids be when this poison to them is removed at such a young age - they hopefully will NEVER experience the terrible side effects. We don't have 'celiac' but it's also not a convenience diet!! I am in my early 30's and I sure don't want to have any of the problems you guys/gals do - enough of a reason to stay 100% gluten-free!

Given the 'small subtle' symptoms my children have - and that ALL my children have them is of GREAT CAUSE for concern. I think the 1 in 133 is for CELIAC with POSITIVE blood tests... my family is 100% negative blood tests. What does that mean? Of my immediate family - I know myself, my father and my four boys are definitely affected. My mother, my wife and my brother (and our new baby hasn't been born) are not I think (I think my mother is too but in denial and I think heading towards heart failure.. that's another issue though :( ) So that is 10 people and 4 are probably not affected. If I did statistics, that's 60%!!!!!!!! I think of course I have double genes so that means all my children will be effected 100% because the celiac genes are DOMINANT (not recessive like some disorders). Even so I still think the numbers given in one book about 30% Gluten, 30% Casein allergy are probably accurate. BTW - Casein is just as bad as Gluten just a little more easily avoided (maybe..).

Until our society accepts sacrifice and people can't have what they want, when they want it, no matter what it is and stops palative cures (ie. medicine) for everything I don't think this situation will change much! I am teaching my children that they must sacrifice and explained the negative effects. We don't even bother eating out - if we go on a trip we'll go to WALMART and buy food we know is gluten-free and make it ourself. We did a cross-country trip and packed simple lunches - rice cakes, peanut butter, etc.. non-perishables and had a great time eating them. I don't accept society cause look at how they treat us - so why give them the satisfaction! :)

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On 8/13/07, Tiffany XXXXXXXXX <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

Her Reply:

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

I was hoping for something different. Guess she is consistant in her responses, all ignorant and rude. :( Thanks for your great letters BB. I give up on her, it isn't worth my anger and rage :D

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I take it back, I had to reply, after all of this, and I did alert her to the possible fertility problems associated with Celiac Disease. I doubt I will get a response. We will see. But I am not holding my breath......

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We don't even bother eating out - if we go on a trip we'll go to WALMART and buy food we know is gluten-free and make it ourself. We did a cross-country trip and packed simple lunches - rice cakes, peanut butter, etc.. non-perishables and had a great time eating them. I don't accept society cause look at how they treat us - so why give them the satisfaction! :)

Ditto - this is exactly the way, we do it. First I planned on also making our travel team totally glutenfree and advertized this as first international glutenfree team in the country. Next thing that happened was, that somebody with a cocoabutter allergy had issues, so I thought, why not do it like this??? And it's working much better. A simple hotel with a microwave on the room is a) 1000 times cheaper and B) we have a much better time, buying, preparing the foods, and joking, while we do it. And it's safe for everyone with other food restrictions, not only celiacs. :P

The other thing, I wanted to say, was I'm shocked how somebody can be so ignorant. This is an awesome thread, some very good letters were sent out and then you get THIS back. How frustrating! But some people are so self-centered, they don't even realize, what's going on outside anymore.

Me personally, I also think, that more people, if not all population is somehow underlying affected by gluten. The 1 in 133 is just the diagnosed number of people with positive bloodwork and biopsy. But remember, you can still have this, even if you have NO signs and negative tests. And I think, misscarriages AND fertility both are very affected, if not caused, by celiac, because of the lack of nutrients and therefore problems in holding a fetus in. Even if a woman has a weak cervix, THIS might be due to celiac (same with heart problems by the way), because the lack of nutrients causes muscle weakness (I had this) and the cervix is a muscle (or held together by muscles).

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Me personally, I also think, that more people, if not all population is somehow underlying affected by gluten.

I had the same thought. The percentage of people having gluten intolerance and celiac disease is very significant, I would think that Alexis and her mother are bound to know someone or even have family members that are dealing with this, or even some other food allergy or issue like lactose intolerance, something that makes them incredibly sick when they ingest it.

I honestly have heard about this phenomenon of women who are "dieting" using a "food allergy" as an excuse not to have to eat something, so that is happening out there. All the more reason for more education about celiac disease.

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If you noticed on Alexis' website under the day 8/10, they say that people from a celiac message board were offended by what they said. They go on to state they did not mean to be offensive and then give a list of all these people who have celiac and were not offended. But what they leave out is how rude and offensive her responses have been to the people on this board. Bronco's original e mail was letting her know he was offended and rather that saying then that she did not intend to offend anyone and apologizing, she has just become ruder and more sarcastic with each e mail. Someone should post that on her show. She came right out and said she does not sympathize, I am sure those celiacs listed on her show would be offended by those words.

Nicole

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If you noticed on Alexis' website under the day 8/10, they say that people from a celiac message board were offended by what they said. They go on to state they did not mean to be offensive and then give a list of all these people who have celiac and were not offended. But what they leave out is how rude and offensive her responses have been to the people on this board. Bronco's original e mail was letting her know he was offended and rather that saying then that she did not intend to offend anyone and apologizing, she has just become ruder and more sarcastic with each e mail. Someone should post that on her show. She came right out and said she does not sympathize, I am sure those celiacs listed on her show would be offended by those words.

Nicole

too true!

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