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VegasCeliacBuckeye

Response I Got My From Alexis Stewart

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My post to them is listed on the bottom of this post. Her response is above mine (normal order in e-mails).

I normally don't get too riled up at these sort of things, but her response rubbed me the wrong way.

Bronco,

"hmmm...so you have to eat a wholesome, healthy diet? no processed foods? might be a pain in the butt, but not THE WORST thing that ever happened."

Whatever Show With Alexis

On 8/10/07, <broncobux2000@yahoo.com> wrote:

Alexis,

In order to assist your (apparently deficient) learning curve regarding celiac disease and gluten intolerance, I would recommend the following literature:

1. Gluten Free for Dummies by D. Korn

2. Celiac Disease: A Hidden Epidemic by Dr. Peter Green

3. Dangerous Grains by James Braly.

FYI, 1 out of 133 people have Celiac Disease/Gluten Intolernace.

I am one of them (and so is my mother).

Broncobux2000, Esq.

Las Vegas Celiac

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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

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CHRIS...WHAT A LETTER!

I'M SO IMPRESSED THAT YOU CAN RESPOND IN SUCH AN ARTICULATE AND PROFESSIONAL MANNER TO SUCH A 'DEMEANING EMAIL' FROM MS. STEWART.

I'm VERY PROUD TO CALL YOU 'FRIEND'

THANKS FOR TAKING THE TIME TO WRITE.

JUDY IN PHILLY

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That letter was beautiful, Bronco! I wanted to stand up and cheer as I was reading :D

How dare she answer you the way she did--no matter how she and her fellow airheads choose to spin this, I read what I read in those transcripts--and her curt answer to you just proves my point that she could care less about what anyone else has to go through.

As one of your sisters in this--I thank you! B)

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YES, WE ARE A BRIGHT POWERFUL BUNCH.................

HEAR US ROAR

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Gosh,

thanks for the support guys! :)

I was really heated yesterday, but I am feeling much better today. I was jsut so shocked that she sent such an ignorant and insensitive response.

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

Thanks again. I love you guys!

:DB):P

BB

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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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If we lived in a perfect world, a gluten free diet would not be a big issue. My four-year-old daughter wouldn't have an average of one hospital stay a year with dehydration from being accidentally glutened.

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Fiddle Faddle,

Perhaps you should walk a mile in Mouse's shoes, or Lynn's shoes, or Karen's shoes or many other posters on here who lengthy trials with celiac disease has been considerably more than "a pain in the butt".

I will let them deal with your post.

BB

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Fiddle Faddle,

Perhaps you should walk a mile in Mouse's shoes, or Lynn's shoes, or Karen's shoes or many other posters on here who lengthy trials with celiac disease has been considerably more than "a pain in the butt".

I will let them deal with your post.

BB

Bronco, I saw your post on Myspace and replied there too. I emailed her too. I hope I get a response I can forward to the listserv. She is way out of line. I don't care if you had symptoms or not, the bottom line is that she said Celiac Disease was fake, not a real allergy, and that people who asked for gluten free menu's just wanted to not have it in their food, and they were making up the allergy to get what they want to eat (and equated it to people who don't like cilantro, and so they say they are allergic, so they are lying just so they don't have to eat it).

I agree with your idea about ratings, but as for me, I will not be listening to her show, just emailing :)

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I will also add that for those of us who have Celiac children, it is certainly more than a "pain in the butt". To watch your child suffer terribly, for some of us for years, for others maybe not so long, but to watch them suffer even for a day is horrible. And now that they are gluten free and healthy (thank God) we have to watch them struggle with their ups and downs with excepting being different. Of course worse things could happen. That goes along with any situation, it could always be worse, but I completely understand your frustration with Alexis Stewart.

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Hi Alison,

I just wanted to give you a little background about Alexis Stewart, who she is , and why a lot of us were upset by her comments. Alexis is the daughter of Martha Stewart, and has a radio show--this was on her show last week--

http://www.glutenfreeforum.com/index.php?showtopic=37260

If you like, read this first, then Bronco's thread--I think you'll understand where those of us who posted were coming from :)

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This will be short as I am on my way to the hospital to get the first of two stents put in my legs.

I find that this disease is more then a simple diet change. Especially if you go undiagnosed until late in life. I have scoliois because of the lengthy time I had malaabsorption. I have two pain killers available to me at all times. One is addictive and I only take it when the pain in my spine is so intense that I want to throw up. I live in pain every day and it has affected my quality of life. And the doctors' tell me that I have a high pain tolerance. I now have to be concerned about my heart and my blood flow to my legs.

I also tell people that it is a simple diet change that has some learning curves, but is certainly doable. I tell them that they don't want to become like me and that the earlier the diagnosis is made the better off they are.

I suffer from ataxia and I cannot get on more then a library type step stool as I don't have the balance. When I get glutened, I misjudge the distance from walls and stagger and all without having a drink in me. I don't want people to think that this is a fad diet or a fake allergy when I am eating out and that I am just being overly cautious. I think Alexix's (sp) words do a disservice to Celiacs'.

Time to get dressed to leave. Anyone for a glass of water LOL.

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Fiddle Faddle,

Perhaps you should walk a mile in Mouse's shoes, or Lynn's shoes, or Karen's shoes or many other posters on here who lengthy trials with celiac disease has been considerably more than "a pain in the butt".

I will let them deal with your post.

BB

I will give Allison a chance to read Ms. Stewart's comments before I answer.

Chris, all I can say to you and your response to her: AWESOME DUDE!!!!!! YOU ROCK!

Luv

Karen

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Excellent letter, well expressed.

Fiddle Faddle, Your right the diet isn't the worst thing in the world, it is the years of misdiagnosis and the resulting problems that are often permanent and deadly that is. For those of us who were extremely damaged before diagnosis, and who are forced to follow the zero tolerance rule because our bodies make us, life is very different after diagnosis. The ignorance about this disease does make it very hard to live a 'normal' life. I am glad this was just a change in diet for you, for folks like me it has been a very big change in my complete way of living. When a night at a restaurant and a slip up by a server results in a day of GI hemmoraging follwed by severe neuro problems, joint pain and bleeding kidneys that can last a month you soon realize that it is not just a 'change in diet'.

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Your number of 1 in 133 is those with SEVERE gluten reactions from not being diagnosed. I will consider myself (and my family) not in those percentages but in Dr. Fine's more likely 20-40% of all people affected in some way - i.e. myself, my Father and all four of my boys (probably my fifth boy we'll see after he's born) are all affected in different ways by Gluten. Yes - you can live with it.. yes you can go undiagnosed. In our case, I could live with it and take medicine - that's what the doctors want you to do. However, looking at my father which is at 60% Kidney failure w/ high blood pressure - which has been REVERSED by the gluten free diet.. my son with Chronic Asthma.. who no longer has asthma at all, and all six of us had chronic reflux and medicine all of which was permanently reversed!!! Yes we can live with it - but we are killing ourselves to do it and making our lives miserable!

If you look at the country and the numbers- people do NOT want to give up anything and want a 'cure all' medicine. Let them have it - and let them suffer the consequences! I for one would rather give up Gluten than be on a lifelong series of medicines... but I have some friends that look only to the 'now' and not the future and don't care about it! I pray for them daily because of what they may have to go through - what some of you DO go through - because of those thoughts... and Alexis Stewart is showing she is in with that crowd - plus I'd never watch her show anyhow.. especially now! I believe my mother is also having gluten problems but she is in denial and will NOT give it up - even when my father did and look at his results!!! My belief - people must make their own decisions.

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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!

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This might come off as a little Pollyanna, but this whole discourse has gotten me very excited.

Tabling the letter writing (which made me amazingly proud to be a member of this board!), I am wondering if the "fad" nature of "gluten free" might turn out to be something that benefits the celiac/gluten intolerant community.

I grew up in a household where my father and little sister were diabetic.

The "low carb craze" post-atkins opened up a whole new world of food possibilities for my diabetic family members. There was a greater understanding about the different types of carbohydrates and more information out there about products.

While most persons who decided to go "low carb" were not, in fact diabetic, it raised consciousness about what a carbohydrate is and does in the body. (My sister's friends finally "got" why she cannot eat large quantities of some fruits and why she had to hold back on pasta and popcorn.)

I am not suggesting that sugar is to diabetics what gluten is to persons with celiacs, it is more complicated than that, but what I am excited about are the options and information!

Imagine if what happened with "trans fat" happened with gluten?!?! Companies going out of their way to beat or exceed FDA standards, changing marketing campaigns just to stay ahead of the curve.

If "gluten free" could become something bigger than just the current 1 in 133, then even more companies/business would be forced to consider gluten free options, or at the very least RESPONSIBLY label products.

Sure, there is going to be some issues with lines between those who are gluten free for medical verses non-medical reasons, but I do think that more exposure can be a good thing, if handled properly. (I personally have used the Alexis' story as a conversation starter with others, perhaps even people I would not have shared such intimate details about my personal body with.) Overall I hope that more good that not comes out of this situation.

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