It's Time To Riot....

[DragonQueen]

hello all fellow celiacs! On another message board there has been uproar about a new book called "Talk to the Hand" by Lynne Truss. This book supposedly talks about rudeness in our society but in chapter 5 Lynnne Truss wrote the following statements in her book:

"I now can't abide many, many things, and am actually always on the lookout for more things to find completely unacceptable. Whenever I hear of someone being 'gluten intolerant' or 'lactose intolerant', for example, I feel I've been missing out. I want to be gluten intolerant too.

I mean, how much longer do we have to put up with that gluten crap?"

GLUTEN CRAP!!!!

other people are goin to this link Open Original Shared Link

to write bad reviews. Now do you get my plan? if we all write bad reviews then her book won't sell as good *evil grin*

[Carriefaith]

I mean, how much longer do we have to put up with that gluten crap

She actually said that in her book!?! That's very disappointing.

[VegasCeliacBuckeye]

Here is my amazon review I wrote:

I apologize to Ms. Truss for being born.

I apologize for existing in Ms. Truss' perfect world. Many of us are "imperfect" enough to have food intolerance and allergies. How silly of us to unite and demand options at restaurants and grocery stores. We should have tucked our proverbial tails between our legs, accepted the "poisons" that malevolently affect our lives. That way, Ms. Truss would not need to live in this new-age culture that fosters honest disclosures regarding food ingredients.

Perhaps if all of us annoying-allergy-fostering-heathens apologize to Ms. Truss for asking for simple meal choices and a healthy environment to flourish (as she obviously is), then maybe society can step forward. I never thought someone would label my medical condition as a nuisance in their life. Is she really mad that restaurants and grocery stores offer gluten free selections? Is she mad that food manufacturers are required to disclose what is in their products? I wish my life encountered as few obstacles as Ms. Truss's -- Imagine, a life so trivial and void of obstacles that one actually has to belittle a portion of the population due to being diagnosed with a genetic disease. Perhaps it would do Ms. Truss some good to research Celiac Disease before she comments on the subject.

While she's at it, why doesn't she criticize deaf people for not being able to hear and handicapped people for being so slow?

Madam, congratulations on offending several million people.

[elonwy]

Open Original Shared Link

Go to this link. You're reading the paragraph wrong. Granted it took me a couple minutes, but shes talking about wanting to be Gluten INTOLERANT so she can be pissed at gluten. NOT that gluten intolerant people bug her. Its a very subtle semantic thing.

She says: I want to be gluten intolerant too.

Then she says "I mean, how much longer do we have to put up with that gluten crap?" AS IF she's stepped into the shoes of a gluten intolerant person. Its a play on words. We should not be offended by it.

It does take about three reads to not be pissed off by it though.

Elonwy

[celiac3270]

People on the Listserv have been writing letters for days.

[VegasCeliacBuckeye]

I guess Elonwy is right...

I read it a few more times -- she seems to be playing on the word "Intolerance" -- the parity between being intolerant (towards something -- getting angry, frustrated) and food intolerance (not being able to digest it).

It is worded poorly, but I understand her humor now -- I retracted my statement on Amazon.

Boy, we Celiacs can fly off the handle pretty easily, huh? (Bronco blushing and embarrassed)...

Unfortunately for the author, she may have underestimated how "hyper-sensitive" we Celiacs can be about our disorder (sometimes Passive-Aggresive --

Sorry about that...

[Canadian Karen]

My first impression upon reading the paragraph was that she wanted to know how much longer did we have to put up with that gluten crap in our food in general (as in, get rid of the gluten in mainstream food)....

I could be wrong, but that was my interpretation.......

Karen

[DragonQueen]

I dissagree elonwy,

Why would she be talking about how it's hard for celiacs and about how much we have to put up with gluten crap in a book she wrote about RuDeNeSS!

It seems a little random to put that in a book of rudeness. I think miss lynn thinks of it as another one of those fabs, like a low carb diet.

Thats my interprentation about it, I could be wrong but still......

[elonwy]

Thank you bronco bux. You helped describe the play on words better than I did, I was fighting to figure out how to say that.

I think the basic crux is that its written as if someone were speaking it ( with an accent no less), which makes it harder to interpret, so it is something easliy misconstrued, but I definitly feel it is not a deliberate attack on celiacs, so won't take it as such.

Its like if George Carlin were British... and female. Weeeiird.

Elonwy

[Rachel--24]

Hmmm...after reading it I kinda think she did not mean it as an attack on Celiacs. I do see how it can easily be misinterpreted though. I wonder, with all these peple writing letters, if she will come out and say what she meant....exactly.

[Carriefaith]

I wonder, with all these peple writing letters, if she will come out and say what she meant....exactly.

I hope she will because I'm interested to know what she meant by that statement.

[Rusla]

I have read this many times. It seems to me what she is saying is that she wants to be lactose and gluten intolerant because she wants to be able to say she is and get special treatment. By her saying 'how much longer do we have to put up with the gluten crap', sounds like she is saying she is tired of hearing it . It keeps sounding to me like she is indicating that we have a choice, like being Vegan.

[celiac3270]

Yeah, I agree with Kayla/Rusla/broncobux... in a book about rudeness, I can't help but think that she thinks we have a choice and that we are making excuses to get special treatment.

[VegasCeliacBuckeye]

Maybe I will buy it and clear up the madness...

[key]

I am sorry, but I have to agree. In a book called, "talk to the hand" about rudeness. It sure sounds like she is being rude to me. I read it to my husband too and he thought that she was being rude.

Haven't read the book or any other context that statement was made in, but just my opinion.

MOnica

[WGibs]

I'm with elonwy on this one and I'll try a slightly different way of explaining it.

She is admitting to being a person who enjoys being against all kinds of things. She's intolerant of lots of behaviors that she classifies as rudeness. She embraces her intolerances and wants more. So, when she hears that some people also have gluten or lactose intolerance, she's jealous because she so enjoys being intolerant of things that she wishes she could be against gluten and lactose too. She's missing out.

Now, she may be somewhat insensitive to how "not fun" it is to have food intolerances, but I don't think she is outright insulting them or claiming that they don't exist.

I haven't read the book, so this is just an interpretation based on her sentence construction. The George Carlin comparison is pretty good -- she's not nearly as funny, but it is the sort of thing he might do a joke on.

[tiredofdoctors]

I wrote a scathing note to both the publisher and agent. I then sent a copy it to KatiUsa's e-mail -- I really stink at the internet, but know how to cut & paste to make a new message. I'm hoping she will post it so that you can read it. It is brutally honest, but to the point.

[KaitiUSA]

I am posting this for someone who could not get this on here

am writing with regard to Lynne Truss' book, Talk to the Hand. She lists her pet peeves, and among them, lists "gluten intolerance". Additionally, in an effort to be humorous, she says that she wants to be gluten intolerant. Please convey to Ms. Truss that she certainly doesn't want that -- ever.

You see, I don't have Celiac disease -- I've been tested, biopsied, been poked prodded and had tubes placed where they were never meant to be placed. I do, however have "Autoimmune Cerebellar Disease", which is also known as "Gluten Ataxia".

Gluten intolerance is an autoimmune response in the body. Your body sees gluten as foreign, and begins producing antibodies. Unfortunately, my body has produced additional antibodies, and the gluten began destroying the cerebellum of my brain approximately three years ago. It also started destroying my retinas. I went from being a vibrant, energetic Physical Therapist who owned her own clinic to a person who can't get out of the bathtub by herself. I'm in a wheelchair now, have developed double vision in one eye, night blindness and color blindness. Additoinally, I have developed more sequelae from this disease than either of you would ever care to hear.

Obviously, I have made my point. I am insulted, at minimum, that a disease which has devastated my life was taken so lightly. I often hear that "ignorance is bliss", but in this case, ignorance was callous and definitely NOT funny. I hope that in the future, Ms. Truss' editor will provide her better service.

Sincerely,

Lynne Ellingsworth-Wagner, PT

[fisharefriendsnotfood]

I am posting this for someone who could not get this on here

am writing with regard to Lynne Truss' book, Talk to the Hand. She lists her pet peeves, and among them, lists "gluten intolerance". Additionally, in an effort to be humorous, she says that she wants to be gluten intolerant. Please convey to Ms. Truss that she certainly doesn't want that -- ever.

You see, I don't have Celiac disease -- I've been tested, biopsied, been poked prodded and had tubes placed where they were never meant to be placed. I do, however have "Autoimmune Cerebellar Disease", which is also known as "Gluten Ataxia".

Gluten intolerance is an autoimmune response in the body. Your body sees gluten as foreign, and begins producing antibodies. Unfortunately, my body has produced additional antibodies, and the gluten began destroying the cerebellum of my brain approximately three years ago. It also started destroying my retinas. I went from being a vibrant, energetic Physical Therapist who owned her own clinic to a person who can't get out of the bathtub by herself. I'm in a wheelchair now, have developed double vision in one eye, night blindness and color blindness. Additoinally, I have developed more sequelae from this disease than either of you would ever care to hear.

Obviously, I have made my point. I am insulted, at minimum, that a disease which has devastated my life was taken so lightly. I often hear that "ignorance is bliss", but in this case, ignorance was callous and definitely NOT funny. I hope that in the future, Ms. Truss' editor will provide her better service.

Sincerely,

Lynne Ellingsworth-Wagner, PT

That is an amazing letter. As an aspiring writer, I have to say that if I ever have to write a complaint letter I will refer back to this one. It's really well written.

I hope you get a good reply!

-Jackie

[Guest BERNESES]

This is what I posted on amazon.

I am extemely disappointed in Lynne Truss. I have previously used her book in my college writing class, but when I saw the comment about gluten-intolerance, I reconsidered. I HOPE that the comment was made in jest, but either way it misrepresents what it is like to have Celiac's disease. Taken out of context, as it will be, it makes us look like a bunch of whining, inconvenient people who choose this way of life. Hardly the case, Ms. Truss. I suggest that in the future, you research a subject before poking jabs at it. That's what good writers do.

[tiredofdoctors]

Jackie -- thank you for the compliment -- I tried to convey (rage), anger, disappointment, but in a way which would be accepted rather than just glossed over. Unfortunately, to date I have not received a reply from either the publisher nor the agent. I will give them approximately three additional days, then ask them as to why they have chosen to ignore my e-mail. Will keep you updated . . . Lynne

[endrun]

JOHN FITZGERALD KENNEDY. Most Americans have heard of him. He suffered Celiac Disease. The family didn't want any of his medical history revealed and did not do so until 2002, when the truth came out in the biography "An Unfinished Life" by Boston University Professor Robert Dallek.

There is sadly in my view, an unwritten rule about using these facts even in the Celiac Community to advance the cause. To me to compound the inexcusable withholding of the medical information of a public figure for so long by the family, an information blackout that tended to thwart further the general awareness of Celiac in the United States, the family still wants the lowly American Peasantry under its continued spell to kowtow to whatever it wishes regarding the use of the man's memory in a carefully controlled manner, despite its lapse in letting such "cats out of the bag" such as the fact that Jack Kennedy took heavy doses of many medications as President among which were Psychotropics.

I understand the use of Psychotropics because one's brain does not function correctly when one is failing to absorb adequate nutrition. Most Celiacs also know that very possibly they can live out their entire lives without an affirmative diagnosis from a medical professional. And Celiacs know the fact of lower functioning in the absence of affirmative diagnosis.

Affirmative diagnosis loomed much larger for me in my life than perhaps for others due to the fact that as a child I faced incarceration upon a locked mental ward for five weeks while in the fifth grade, two years banishment from my (Catholic) Elementary School, and one year required to ingest the Psychotripic Thorazine. That started in the year 1968 but had the Kennedy family decided to beat the five year mark since Jack's sad death in Dallas, perhaps I might have been spared some of that experience(on second thought, mmm nah wouldn't have been spared that). I was treated thenceforth by my parents as a mentally ill individual with all the privileges of nonpersonhood attached thereto. As such at 49 today I live alone on government assistance with no prospect of betterment either in my past or in my future. There are many resentments I have toward my situation but none so strong as my resentment of the Catholic church and its power, a part of which were the Kennedy family and their power. I do however think and believe that Jack, if he could speak, would tell us that there is no problem using his name to make progress in Celiac awareness and so forth and in fact I think he would find it an honor, unlike his overprotective heirs, cousins, and etc.

The news media in this country continues, if they pursue the facts here at all, along the lines of "Well JFK had Addison's Disease, which is a serious life-threatening condition." IS Addison's Disease a serious, life-threatening condition? Yes. Did Jack Kennedy have Addison's Disease? No. He had Celiac Sprue, without any question. And he suffered more by his medical mistreatments and misdiagnoses than from any other source.

I believe personally the Celiac community SHOULD come together toward filing a class action lawsuit against the Kennedy family of Hyannis, Massachussetts, for illegally withholding JFK's medical information, information which normally should have been in the public domain and should have been in this domain much sooner. The Kennedy family has of course fought tooth and nail against release of his Assassination materials such as autopsy photos, which is relatively speaking to the issue of Celiac Sprue, well within their rights to do. Contrary to the entire American Myth surrounding the life and death of JFK, JFK lost his life as a result of one man shooting a rifle at him as his limo passed through downtown Dallas Texas on Nov. 22, 1963. The motive for the killing MAY have included his support for the repeal of the oil depletion allowance, a law that was passed cutting into oil profits especially in Texas, but the carrying out of his murder was exactly according to how the government through the Warren Commission described it, which is, fairly simple Physics of bullets from a rifle. There is in fact nothing notable more to that part of it contrary to the cottage industry of literature which has helped persuade the American People that there was something more dastardly or extensively conspiratorial to the entire matter.

I have in fact written a book underscoring the fact that JFK had Celiac Sprue. I have been accused on other websites of promoting my book or myself but the simple fact of the matter is I wish to promote THE TRUTH FIRST toward getting us in the Celiac community the recognition we all deserve.

As in many support groups online and elsewhere, people can disagree over strategies toward common goals--reasonable people may do this and there is nothing wrong with this. It is my sincere hope however that the institutional divisions with the Celiac community will dissipate and that whether anyone thinks I am nuts for proposing such legal action as noted above or personally offended via some idea of an ideal that most likely never was although the media presented it to the public that it was, I am fine with people disagreeing and not wishing to pursue my suggestions. I only ask that anyone else please strive to be as tolerable with me over any disagreement anyone might have with me as I will certainly strive to do for you as a fellow Celiac.

THANK YOU!!