Response I Got My From Alexis Stewart

[VegasCeliacBuckeye]

Alexis' response to my letter:

"try not going to local chain restaurants...i never do simply because they are disgusting

bring a pair of chopsticks

wedding food is usually disgusting

and your friends should be happy to accommodate your illness

I have read plenty and simply think that in the scheme of things there are worse things that can happen

at least you have a possible way to deal with your illness,

Alexis"

I think she missed my point. LOL - not that I excpected her to anyway...

BB

[Jestgar]

Unfortunately she appears to have no way of dealing with her illness: a complete disregard for other human beings.

[VegasCeliacBuckeye]

My newest response (yes it has more teeth).

"Alexis,

I understand its difficult for you to understand the plight of common plebians when your family sits atop a billion dollar empire, but let me help you come down from that cloud and understand what "average income" folks go through...

1. We, the people of normal earnings, don't get to eat at the best and safest restaurants all the time. Chain restaurants provide gluten free menus more commonly than other restaurants (as their restaurants are run with supposed uniformity). Unfortunately, we are still at the mercy of 20 something servers/line cooks and one mistake and we are sick for a few days to a week. One day when we are wealthy enough (like you) to have our own maids, butlers and chefs, perhaps then we can quit going to these "disgusting" places. Until then, most of our friends and families commonly eat at these places, so we normally accompany them.

2. Chopsticks don't help if the food is tainted to begin with. Besides, have you ever tried to eat mashed potatoes or tomato soup with chopsticks??? They don't always work very well.

3. Wedding food is normally revolting, but it makes for an uncomfortable environment when you don't eat with everyone else or if the couple still has to pay for your meal when you aren't able to eat. You missed the point, genius. Its the struggle for normalcy that is difficult, not the opportunity to eat cold steaks and brown vegetables.

4. Friends and family "should" accomodate, but lets be real, they don't have the disease and they aren't as vigilant about it as we are. Perhaps in a perfect world it might happen, but this isn't a perfect world. People are likely to bend over backwards for a person like you, but for the rest of us, we don't receive "star" treatment.

5. What exactly have you read about Celiac Disease? I would love to know...

6. I see you have reverted back to the old "if you are not dying, then your problems aren't worth mentioning" bit again. How can you sit there with a straight face and dismiss other people's medical conditions because they aren't always terminal?? What gives you the power to do that? How presumptious of you! I wonder how my friend "Metta" would feel it if I told her not to raise such a fuss about her heart and neurological conditions brought on by gluten ataxia because "she is not a cancer patient" and thus, better off. I am pretty sure I would lose a friend or get smacked in the face!

I'm beginning to either think that your mother failed to teach you compassion and sympathy for other people's medical conditions or you are merely trying to drum up ratings for your show by antagonizing potential listeners.

Step off the high horse, Alexis. You make too easy a target.

Bronco"

[stef-the-kicking-cuty]

This is an awesome letter, Bronco! I don't think, I could have been that professional. I would have rubbed it in at your point in Nr. 1 (edited: I meant Nr. 1 in the first letter) and added "Infertility"... lol.

I fully expected her to write an answer like this. What do you expect

[jerseyangel]

Another good one, Bronco....

Chopsticks for heaven's sake.

It's funny--last year, her mom did a very good show on gluten free cooking. I thought Martha did a great job with it--asked good questions, had her facts straight for the most part, etc. and I said so here at the time. I just don't understand Alexis's thoughtlessness and lack of compassion and common courtesy.

At least you tried--I do appreciate it, as I doubt I could have written anything near as good as you did.

[Jestgar]

Another good one, Bronco....

I doubt I could have written anything near as good as you did.

Yeah. You do kick butt BB!!

[jkmunchkin]

Bronco - OMG, I thought the 1st letter you wrote was amazing... but this is GENIUS!!!

[Rachel--24]

I would have rubbed it in at your point in Nr. 1 and added "Infertility"... lol.

and with this...perhaps she is realizing that money doesnt buy or "fix" everything.

I think its possible that her own struggles are all thats important to her at this time...anything else is "trivial" to her..... she apparantly is very self-centered.

Unfortunately, she's not gonna understand or have compassion for anyone who is writing to her about Celiac Disease.

[Canadian Karen]

OMG! This chick is apparently quite a piece of work, ain't she?

She sounds to me like the spoiled rich kid who has totally lost touch with reality when it comes to the real world and those smucks (us) who have to survive in it. It kind of reminds me of the Paris Hilton, Nikki Hilton, Nicole Ritchie, Lindsay Lohan, Britney Spears camp. That little incident with Britney the other day really highlighted the mindset of people like that (when she hit that person's car while trying to park with her little toy dog in her arms (DUH!) and when she got out, she checks out the damage to her car but is totally oblivious to the fact she caused damage to someone else's care and doesn't even look at it!).

Anyway, back to the point:

What concerns me greatly is the "off the cuff" "trendy" spin being put on the gluten free diet. We are somewhat at a crossroads right now. CNN Money had an article a few months ago that the gluten-free diet is the quickest growing special diet in North America. That is great news as long as people are aware of the seriousness of this diet and how important it is to those of us with gluten intolerence/celiac disease. PEOPLE MUST CONSIDER IT TO BE AS SERIOUS AS A PEANUT ALLERGY. People MUST realize that even cross-contamination can wreak havoc with our bodies. If people start thinking of the gluten-free diet as a "fad" diet, i.e. the Atkins diet, then the possibility of "fake" gluten-free options will increase. Establishments will advertise "Gluten-Free" to jump on the bandwagon without realizing how important it is to educate themselves prior to offering it. In my opinion, people like this Ms. Stewart ridiculing the diet in such a way does nothing but minimize the importance of how strict we need to be. She discusses it like it is a fad and not at all like she should: Gluten intolerence/celiac disease is real, it is an autoimmune disease, and it is very serious.

I sure would love for her to walk a mile in my shoes. I would love for her to have to live her life going to the bathroom 20 - 30 times a day, EVER DAY, nothing but water, and add fecal incontinence to that just for fun. Try being 44 years old and living in Depends. Try being terrified to make love to your husband for fear of having an accident. Try having to fast for 24 hours before I leave the house for any reason just to minimize my chances of "leaking"...... Try having your body ravaged by massive doses of Prednisone that doesn't work anyway. Try being weak, fatigued and exhausted ALL THE TIME!

Another thing she doesn't realize is the celiac community is still mostly comprised of those of us "old timers" who have been diagnosed after 10 - 15 years of hell, because this disease was so unknown and underdiagnosed. So the majority of celiacs are dealing with multiple chronic issues because of that (hypothyroidism, neurological damage, osteoporosis, etc. just to name a few). The newer celiacs just being diagnosed are just starting to come down the pipe, the ones that are being caught quicker because of the increased awareness to this disease. To those, sure, this diet is "a minor inconvenience", but to us dinasaurs, we are still living in hell.

Yep, I could go on, but it really isn't necessary. I could point out every single thing that is wrong with me PERMANENTLY because of years and years of being misdiagnosed, but it would just go in one ear and out the other with her (and quickly I might add, considering there doesn't seem to be much in between).

Hey Lynn, time for you to chime in. I would almost pay money to hear your response to Ms. Stewart!

Love

Karen

[happygirl]

My thanks to Bronco for standing up for what's right.

[jerseyangel]

Another thing she doesn't realize is the celiac community is still mostly comprised of those of us "old timers" who have been diagnosed after 10 - 15 years of hell, because this disease was so unknown and underdiagnosed. So the majority of celiacs are dealing with multiple chronic issues because of that (hypothyroidism, neurological damage, osteoporosis, etc. just to name a few).

This just hits the nail on the head.

[Fiddle-Faddle]

Thanks for the link, Patti--that makes everything much clearer. Not being a Martha Stewart fan, I had no idea she even had a daughter, let alone one with a radio show.

Also, thanks to all who posted clarifying info. Ravenwoodglass's point (that it's the years of damage caused by years of misdiagnosis that can turn this into something deadly) especially puts it all in perspective.

Judy, I think your friend's letter was marvelous--concise, to the point, and yet still polite and respectful. I'm very curious--did Alexis respond, and if so, what was her response?

Broncobux, I understand all your points, and I don't disagree with those points, just the manner in which you presented them. If you think someone is ignorant, by all means, educate them, but you can't educate with rage. And if you have someone you think is arrogant, simply giving them links to look up is probably not going to be effective. Look how many here have had difficulty getting family and friends to understand--and family and friends are supposed to care! (And yes, I do agree with her point that your friends SHOULD be accomodating to your illness!)

We certainly can't expect someone who has never been touched by severe, undiagnosed celiac to understand where we are coming from unless we educate. And lashing out with all the anger and frustration you've built up after umpteen years of suffering--that doesn't educate.

I think it would be better to put together something with a few well-chosen quotes from high-profile, well-documented studies that show the severity of cross-contamination as well as the link between gluten and all those severe autoimmune disorders, and especially the link with lymphoma.

My take on Alexis after reading the links (I did not hear the show and have never heard her before) is that, as you said, she is woefully ignorant. But what kind of response do you expect when you tell someone that they are woefully ignorant? Do you think they are going to want to run right out and do research? Or are they going to get defensive?

I am disturbed that she only sees the loss-of-convenience component of celiac, and is apparently oblivious to the life-threatening situations so many of you have endured. I suppose it 's possible that she has only had contact with celiacs who were caught early, and doesn't know about the effects of long-term gluten poisoning. But that is where we can do something positive. And lashing out at her is not doing something positive.

Is she correct that, in the scheme of things, there are worse things? Of course. Anyone who has ever lost a child could tell you that. I do see why you don't think she "gets it," though, especially where she says that she has "read plenty." Again, though--most of us didn't have a clue what it's really like until we went through it ourselves.

I think we should try to get a dialog going with Alexis about celiac disease in general. This is a great opportunity to get her on our side and maybe help educate others. Maybe we could put together something with a few well-chosen quotes from high-profile, well-documented studies that show the severity of cross-contamination as well as the link between gluten and all those severe autoimmune disorders, and especially the link with lymphoma. I know it's tempting to scream about what we've been through (and I really shouldn't include myself in that "we", as my symptoms, distressing as they were to me, just don't compare with most of yours), but I have found that people who haven't been touched by something similar just shut down when you start talking. I nearly lost my oldest child before he was born, and he had open-heart surgery at 2, and was diagnosed as autistic at 3, but when I have tried to explain that to people, their eyes just glaze over, and they change the subject as soon as possible. But when I have talked about studies related to autism, they are interested. I suppose they just don't want to know too many personal details; perhaps it sort of gives them the responsibility to care--and they don't want to.

So let's collect some concise information about celiac and send it to Alexis along with an invitation

to join us on a new thread discussing what it's REALLY like to have celiac, and how those who suffered for years before diagnosis have a very different take on it than those who were caught relatively early. And we can educate her about how Europe handles gluten issues. I bet she doesn't know that Italy and Sweden routinely screen all toddlers for celiac, for example. We could invite her to ask questions, and maybe we can change some of her misconceptions if we approach her with the same politeness and respect as Judy's friend did.

Broncobux, I think you do have a lot of important things to say--but you always come across to me as being so full of rage, my impression is sometimes that you are totally unbalanced. And you are probably not unbalanced! But your words paint a picture, and probably not the one you intend. I know you probably had to scream for years to get the doctors to listen to you (and they probably didn't anyway), but I get the impression that you are now in the habit of screaming whenever you disagree with someone or whenever you think that they have done you wrong. And that is probably cathartic for you, but not the best way to deal with others, no matter how ignorant or arrogant you think they are.

Does anybody know what the current proportion is of celiacs who were caught early (Group #1)compared with celiacs who were misdiagnosed for enough years to have severe, permanent, debilitating damage (Group #2)? Hopefully, the first group will someday be the only group, and I assume the first group is increasing quickly, but I'm curious what the proportion is.

I know I owe a lot to Canadian Karen, Lynne, Ursa Major, Judy, and others who were posting their experiences a year and a half ago. Without you guys, I would have been in the second group, as I would not have known enough to stop eating gluten. I've noticed that, without exception, all my acquaintances who hear I am gluten-free are far more appalled by the lack of convenience than they are by the risks I would face in continuing to eat gluten, so perhaps Alexis' attitude is merely a reflection (and a sad one) of our society in general.

[Fiddle-Faddle]

Karen, you are awesome!

[stef-the-kicking-cuty]

I think its possible that her own struggles are all thats important to her at this time...anything else is "trivial" to her..... she apparantly is very self-centered.

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?

[uclangel422]

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.

[Lisa]

Thanks for the link, Patti--that makes everything much clearer. Not being a Martha Stewart fan, I had no idea she even had a daughter, let alone one with a radio show.

Also, thanks to all who posted clarifying info. Ravenwoodglass's point (that it's the years of damage caused by years of misdiagnosis that can turn this into something deadly) especially puts it all in perspective.

Judy, I think your friend's letter was marvelous--concise, to the point, and yet still polite and respectful. I'm very curious--did Alexis respond, and if so, what was her response?

Broncobux, I understand all your points, and I don't disagree with those points, just the manner in which you presented them. If you think someone is ignorant, by all means, educate them, but you can't educate with rage. And if you have someone you think is arrogant, simply giving them links to look up is probably not going to be effective. Look how many here have had difficulty getting family and friends to understand--and family and friends are supposed to care! (And yes, I do agree with her point that your friends SHOULD be accomodating to your illness!)

We certainly can't expect someone who has never been touched by severe, undiagnosed celiac to understand where we are coming from unless we educate. And lashing out with all the anger and frustration you've built up after umpteen years of suffering--that doesn't educate.

I think it would be better to put together something with a few well-chosen quotes from high-profile, well-documented studies that show the severity of cross-contamination as well as the link between gluten and all those severe autoimmune disorders, and especially the link with lymphoma.

My take on Alexis after reading the links (I did not hear the show and have never heard her before) is that, as you said, she is woefully ignorant. But what kind of response do you expect when you tell someone that they are woefully ignorant? Do you think they are going to want to run right out and do research? Or are they going to get defensive?

I am disturbed that she only sees the loss-of-convenience component of celiac, and is apparently oblivious to the life-threatening situations so many of you have endured. I suppose it 's possible that she has only had contact with celiacs who were caught early, and doesn't know about the effects of long-term gluten poisoning. But that is where we can do something positive. And lashing out at her is not doing something positive.

Is she correct that, in the scheme of things, there are worse things? Of course. Anyone who has ever lost a child could tell you that. I do see why you don't think she "gets it," though, especially where she says that she has "read plenty." Again, though--most of us didn't have a clue what it's really like until we went through it ourselves.

I think we should try to get a dialog going with Alexis about celiac disease in general. This is a great opportunity to get her on our side and maybe help educate others. Maybe we could put together something with a few well-chosen quotes from high-profile, well-documented studies that show the severity of cross-contamination as well as the link between gluten and all those severe autoimmune disorders, and especially the link with lymphoma. I know it's tempting to scream about what we've been through (and I really shouldn't include myself in that "we", as my symptoms, distressing as they were to me, just don't compare with most of yours), but I have found that people who haven't been touched by something similar just shut down when you start talking. I nearly lost my oldest child before he was born, and he had open-heart surgery at 2, and was diagnosed as autistic at 3, but when I have tried to explain that to people, their eyes just glaze over, and they change the subject as soon as possible. But when I have talked about studies related to autism, they are interested. I suppose they just don't want to know too many personal details; perhaps it sort of gives them the responsibility to care--and they don't want to.

So let's collect some concise information about celiac and send it to Alexis along with an invitation

to join us on a new thread discussing what it's REALLY like to have celiac, and how those who suffered for years before diagnosis have a very different take on it than those who were caught relatively early. And we can educate her about how Europe handles gluten issues. I bet she doesn't know that Italy and Sweden routinely screen all toddlers for celiac, for example. We could invite her to ask questions, and maybe we can change some of her misconceptions if we approach her with the same politeness and respect as Judy's friend did.

Broncobux, I think you do have a lot of important things to say--but you always come across to me as being so full of rage, my impression is sometimes that you are totally unbalanced. And you are probably not unbalanced! But your words paint a picture, and probably not the one you intend. I know you probably had to scream for years to get the doctors to listen to you (and they probably didn't anyway), but I get the impression that you are now in the habit of screaming whenever you disagree with someone or whenever you think that they have done you wrong. And that is probably cathartic for you, but not the best way to deal with others, no matter how ignorant or arrogant you think they are.

Does anybody know what the current proportion is of celiacs who were caught early (Group #1)compared with celiacs who were misdiagnosed for enough years to have severe, permanent, debilitating damage (Group #2)? Hopefully, the first group will someday be the only group, and I assume the first group is increasing quickly, but I'm curious what the proportion is.

I know I owe a lot to Canadian Karen, Lynne, Ursa Major, Judy, and others who were posting their experiences a year and a half ago. Without you guys, I would have been in the second group, as I would not have known enough to stop eating gluten. I've noticed that, without exception, all my acquaintances who hear I am gluten-free are far more appalled by the lack of convenience than they are by the risks I would face in continuing to eat gluten, so perhaps Alexis' attitude is merely a reflection (and a sad one) of our society in general.

I would think it wise to discuss content and not profile a personality. On a public forum, I would find that extremely inappropriate.

[jkmunchkin]

Broncobux, I think you do have a lot of important things to say--but you always come across to me as being so full of rage, my impression is sometimes that you are totally unbalanced. And you are probably not unbalanced! But your words paint a picture, and probably not the one you intend. I know you probably had to scream for years to get the doctors to listen to you (and they probably didn't anyway), but I get the impression that you are now in the habit of screaming whenever you disagree with someone or whenever you think that they have done you wrong. And that is probably cathartic for you, but not the best way to deal with others, no matter how ignorant or arrogant you think they are.

I don't think BB comes across like that at all. I always find his posts to be very informative and often very warm, especialy when people need Vegas advice.

I don't want to start a debate about his personality, but personally I think the emails he has written Alexis have been wonderful, and I appreciate them.

[Canadian Karen]

Chris is one of the most level-headed, articulate, helpful human beings I have had the pleasure to get to know on this forum. Unbalanced is definitely a word I would not even remotely consider when describing him.....

Me on the other hand.......

Luv

That wild, wacky Crazy Canuck!

[Fiddle-Faddle]

Well, then, I apologize for having the wrong impression.

[jerseyangel]

I just went back and re-read Bronco's letters. I thought the first one was very informative. I saw no rage in it whatsoever.

The last one I thought was also very restrained considering the way she very flippantly answered him. Bronco had already written a thoughtful letter, and instead of engaging in a dialogue herself or asking about what she obviously didn't understand, she chose to ignore his points and give ridiculously dismissave answers--obviously missing the point completely.

I agree completely that we should do all we can to educate others, as I feel Bronco tried to do here. It's hard not to be passionate about this--but I just don't see where he was out of line in any way.

[Judyin Philly]

HI Friends on c.com

Lord I was gone since 9:30 am just getting on line.......................wow

what a day you've had...

I skimmed and will have to go back and read carefully again but just want to thank Chris and Metta and Karen for posting private and insightful peeks into the life of us who's lives have been turned up side down by this horrid disease and thus ---Leave us 'bent' but not 'BROKEN'. 20 years un dx'd took it.s toll on so many of us oldtimers ....for sure.

WE WILL KEEP FIGHTING WITH OUR LAST BREATHS...

AFTER pt today I tried to do some shopping...it's a normal event...something like Karen have to plan for.....and with the heat, and being on my lymph leg...the hives are coming...the redness will be next then the swelling then the ............OFF LEG AND ELEVATE IT ...and on my butt again..

sorry I digress......

Alison...Yes my sweet dear friend from DAILY STRENGTH FORUM did get a reply to the compassionate and professional letter she wrote. She is following this thread as I directed her to come here and follow Chris's letter.

She gave me permission to post the response from Ms Stewart. She sent it to me this am. Frankly I was too angry to post it before I rushed out this am. Seems those of you who got responses were the UNLUCKY ONES....SHE IGNORED MINE.

I'll go get it and post it now.

judy in Philly

[Judyin Philly]

This is the responce my friend got back...when she tried ...in vain it apears...to let her know..yes cancer can be the result of un dx'd celiac disease.

SHE POSTED THIS TO ME THIS MORNING.

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"

MY FRIENDS FEELINGS? She battled cancer...stage 4 lymphoma...guess she doesn't have the energy to fight with 'air heads'

Sje wrote me---

"""There is just no getting through people like them!!!!!!!!!!!!!!!!! GRRRRRRRRRRRR! I will not pursue further with them or the likes of them!

HERE IS THE LETTER SHE WROTE FOR THOSE WHO MISSED IT.

Ms Stewart,

It has come to my attention through a friend, that you have a negative attitude about people with Celiac disease and the need for a gluten free diet and gluten free restaurants.

Well, I must tell you....you need to read up quite a bit on the subject.

I was diagnosed with Celiac Disease June of 2006 at the same time I was diagnosed with Lymphoma stage 4 that was caused from the Celiac Disease. I had been ill for a long time.....the final testing is when all of this was discovered. Thankfully--I am in remission from the cancer after undergoing 10 months of chemo. I just turned 60 years old this year, my doctors believe that I had Celiac ever since childhood and was misdiagnosed all these years. Had I known, I certainly would have been following the gluten free diet and would welcome restaurants where I could safely dine.

Did you know that 1 out of every 133 people have Celiac Disease and do not know it?

Lord, knows we want to eat too. Those of us with Celiac Disease also develop other intolerances, i.e. soy, dairy, nuts. I also have Chron's disease...so I am limited with foods for this disease, and now my doctors are testing me for Oxalate intolerance!!!!! Gee, it would be so nice to have articles/recipes in magazines and newspapers to help others who may be experiencing food related problems.

We, in the Celiac community have been begging our Senators and Congressmen to pass a bill to help educate everyone in the medical field from doctors to insurance companies about this Disease.

It would be helpful if celebrities, as yourself and your mother, would educate yourselves and climb on board with us to educate the world. This disease, if left unattended, can cause cancer and other serious related problems. I know it happened to me!

"They used to put out some really great recipes but now they only feature articles about weird and

[jerseyangel]

Judy--

Wow--if that's how she responds to a letter like the one your friend wrote, then there's no getting through to her.

She should be ashamed of herself. I want to use words now that I shouldn't, so I'm not commenting further.

[Mtndog]

I applaud everyone who has written to her. BB- Nicely done!!!!!!!!!!!!!!!!!!

I sent her an email and told her if she really wanted to learn about celiac to come to this website!

[Canadian Karen]

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"

Wow! She's a poster child for "callousness"