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srokie

Kimberly-clark

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You are correct. Srokie did nothing wrong at all. She simply offered some information and cited it's source.

Thanks for the information Srokie. Right off the bat, I'd have to say that none of what you say would surprise me one bit. These days, it is easier FOR ME to avoid foods rather than get to the bottom of whether they have gluten or not. If a company as big and scrutinized as McDonalds can avoid listing wheat on its french fries, then I'll say right now that I will never assume that wheat is not in anything (yes, even toilet paper) and I will never assume that any product does not contain wheat just because it is not listed as an ingredient or someone states that they called such and such company and an employee said that there is no gluten .... Food labelling is apparently tricky business, to be kind about it, and your suggestion that a company might accept paying a fine rather than list an ingredient would not surprise me one bit.

If you review the thread there is NOTHING in her presentation to indicate the she felt she was better than anyone else or that what she was saying was the undeniable truth.

She was simply relaying information that she had heard.....as soooo many others have in the past.

Nothing was stated as FACT....until post #8....when things went into a different direction.

I can tell you that if I had these types of posts directed at me....whether it was my first week here...or my second year here....I would not wish to remain on this board.

So far in the past few days she has been accussed of being a troll, a fraud, seeking financial gain, promoting her Dr....and now she is attacked for posting information which nobody can even prove to be false.

And even still....she is now someone who is throwing a temper tantrum because people disagreed with her??? :blink:

I think shes very justified in her response.....given all that shes dealt with trying to be a part of this board the past few days. If anyone is having a problem with open-mindedness....its certainly not Srokie.

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very good, I'll look for these. So...you don't cook them, you just wet them?

:lol: Linda - I believe you may have asked this before, and I forgot to answer. So sorry. The dingos....well Tika (in avatar, at Carmel beach yesterday), I got at SPCA 12 years ago, as a 10-week-old VERY HYPER puppy. Her brother had one blue eye. I think she is shepard/red queensland, or husky/queensland. Not sure. Exceedingly bright, VERY intense and very agile/athletic. Annie - found her on the highway about four years ago. Sweetest dog I've ever known. She is a herder of some sort.....maybe part cattle dog? Her herding is not always received so well at the beach. :lol: Sometimes looks very Basenji in her expression, and she seldom barks.

Heelers are my favorite dogs - I'd never have any other kind. :)

That's right, I just run them under the tap (or faucet for you Americans :P ) under warmish water about 10 - 15 seconds. They start out looking like hard plastic and end up very soft and pliable. I admit I do pat them with a paper towel ( :ph34r: not sure I should have admitted that in this thread) so they are not dripping wet when adding the fillings.

(Your dogs are lovely and I like to get mine from the SPCA also. We had a border collie cross who was always herding us at the same time our heeler cross pup was nipping at our heels. Usually we managed to herd them to the tv room to relax.)


Linda, Mom to Ty (11 years old)

Ty was diagnosed by blood test June 7/05

biopsy Aug 11/05, diagnosis confirmed Aug 18/05

Mom, Dad and big brother Celiac-free.

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I got one very polite response back, but no other interaction, ever again (you know who you are), and felt very excluded from what seemed like very close and cliquish behavior.

If this was me, and I don't know that but can imagine that it is, I would like to address the point that some people - myself included - aren't great at extended undirected interaction with people we don't know (or even with people we know very well! ;) ). There's no reason to assume that it's a sign of exclusion or cliques unless you assume that people operate the way you do - which, granted, is a pretty easy assumption to make. And, if it was me that made you feel that way, I apologize for engendering those feelings, but don't know really what else I should have done. (Maybe I'm just not that welcoming onlinr. :) )

I think such assumptions are part of the problem we had in this thread, but such is the way of internet communication with people we don't know personally.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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If this was me, and I don't know that but can imagine that it is, I would like to address the point that some people - myself included - aren't great at extended undirected interaction with people we don't know (or even with people we know very well! ;) ). There's no reason to assume that it's a sign of exclusion or cliques unless you assume that people operate the way you do - which, granted, is a pretty easy assumption to make. And, if it was me that made you feel that way, I apologize for engendering those feelings, but don't know really what else I should have done. (Maybe I'm just not that welcoming onlinr. :) )

I think such assumptions are part of the problem we had in this thread, but such is the way of internet communication with people we don't know personally.

Very well said, and no, it was never you. :) I find you to be a solid voice of reason, at all times - and very informative. But also remember, and I should have expressed this more clearly - - when I joined this thread, I was a very, very depressed, over-sensitive, and extremely malnourished Celiac, with no energy and nothing but clouds and fog in my brain, and tears every day. So, my tone may have been too depressive for people to even WANT to interact with me....I would not blame them. I'm glad you mentioned this Tiffany, so I could clarify what I meant.


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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Well, I'm glad someone got something good out of this thread! :rolleyes:

Hugs.

Karen

Yippee!!! I'm glad I could help this turn into something constructive! LOL!! :P I hope its ok to post stuff that I have from Clan Thompson, didn't really think about that until after the fact (whoops!). It was my big and coolest ever Christmas gift from my husband. A Palm with that loaded on it, now I am not always stuck guessing what is safe and what isn't in the middle of a store or restaurant!


Amy

Diagnosed by biopsy with DH August 2005

Diagnosed with hypo-thyroidism December 2005

Diagnosed by biopsy with Celiac July 2006

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I will put the reply here and in a separate thread--someone did request the emails be posted outside of this thread.

I received an answer from Kimberly Clark today:

Dear Debra,

Thanks for your e-mail about SCOTT


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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I don't know if this has been pointed out, but srokie claimed that ALL Kimberly-Clark toilet papers are "dusted," and yet we've had at least two very sensitive people say their paper of choice is Scott. Folks, Scott IS a Kimberly-Clark company.

I'm also curious why wheat-flour dusted toilet paper wouldn't leave a little pile of flour dust on the floor below the holder, in addition to you know where else.

richard

I got me to thinking that wouldn't something dusted with wheat flour attract bugs?


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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"Food labelling is apparently tricky business, to be kind about it, and your suggestion that a company might accept paying a fine rather than list an ingredient would not surprise me one bit."

The problem for me is that it makes no sense whatsoever from a money-making perspective -- and that's what Kraft exists for, to make money. The profits they make from people with celiac and wheat allergies on nuts and Crystal Light isn't even a fraction of a drop in the bucket for them. Yet they would illegally hide wheat and take a chance of massive lawsuits and fines?

richard

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I've got an idea about making people feel welcome, but it went off into it's own little thing. I also think it's a good thing to talk about for a new topic so it can be seen by more people and not buried in a topic that isn't really about welcoming people.

Anyway, check for a new topic from me in a bit.

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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I got me to thinking that wouldn't something dusted with wheat flour attract bugs?

Ugh! You made me picture finding a long lost, sealed, roll of toilet paper two years after it was bought, crawling with weavils. (Flour being allowed to have so many ppm of bug larvae, after all.) ICK ICK ICK!!

:lol:


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Ugh! You made me picture finding a long lost, sealed, roll of toilet paper two years after it was bought, crawling with weavils. (Flour being allowed to have so many ppm of bug larvae, after all.) ICK ICK ICK!!

:lol:

oh holy cow.......just one more thing to worry about, not only STICKY BUNS but weevil infestation of our toilet paper.............EWWWWWW!!! :lol:


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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oh holy cow.......just one more thing to worry about, not only STICKY BUNS but weevil infestation of our toilet paper.............EWWWWWW!!! :lol:

ugh..I think I just puked a little....

Anyways..back to this whole paper products thing...I can't tell you how surprised I was to figure out that PAPER TOWELS have been a major glutening factor for me. I would always get sick after having fried foods, but I always blamed a "crummy" kitchen, or maybe contaminated oil. The thought that it could have been one of the many Georgia Pacific towels makes me sick (we always remove excess oil from fried foods like french fries, fish, onion rings, etc by blotting them or setting them on a stack of paper toweling)..I trusted paper towels so completely! Somehow, I feel like I should have known about this so I must ask the question...what else am I missing? I don't really worry about things like shampoo or toilet paper because I wash right after I use these products..but what about other things like facial tissues, etc? I've also wondered sometimes about what all goes into water softening machines (somehow the WATER at work makes me sick every time), etc... Anyone have any other ideas of "in your face" type things that we could be missing?

Amy

p.s. if you're looking for those rice wrappers and you're in Michigan... Meijers has them in the ethnic foods aisle...great to have on hand and fairly inexpensive..Yes, you can have egg rolls again!


Diagnosed by biopsy and Gluten-Free since March 2003. I have the noisiest stomach known to man. Seriously, how do I turn off this crazy thing??? Sounds like I've got an alien in there...

Go Green! Go White! Go State!

For the ultimate donuts, visit www.celiacspecialties.com. I wouldn't lie to you, I swear!

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ugh..I think I just puked a little....

Anyways..back to this whole paper products thing...I can't tell you how surprised I was to figure out that PAPER TOWELS have been a major glutening factor for me. I would always get sick after having fried foods, but I always blamed a "crummy" kitchen, or maybe contaminated oil. The thought that it could have been one of the many Georgia Pacific towels makes me sick (we always remove excess oil from fried foods like french fries, fish, onion rings, etc by blotting them or setting them on a stack of paper toweling)..I trusted paper towels so completely! Somehow, I feel like I should have known about this so I must ask the question...what else am I missing? I don't really worry about things like shampoo or toilet paper because I wash right after I use these products..but what about other things like facial tissues, etc? I've also wondered sometimes about what all goes into water softening machines (somehow the WATER at work makes me sick every time), etc... Anyone have any other ideas of "in your face" type things that we could be missing?

Amy

p.s. if you're looking for those rice wrappers and you're in Michigan... Meijers has them in the ethnic foods aisle...great to have on hand and fairly inexpensive..Yes, you can have egg rolls again!

Actually, I think you best check on those paper towels, I don't think they would contain flour anymore than the toilet paper. It's possible that there is a tiny amount in the glue that they use to make the cardboard roll the paper towels are on, but it's not likely to have flour in the towels themselves.


Shirley

[save the Earth, It's the only planet with chocolate and wine.

It isn't about waiting for the storm to pass...

It's about learning to dance in the rain.

Gluten free since 1989

West Kootenay.... British Columbia

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Actually, I think you best check on those paper towels, I don't think they would contain flour anymore than the toilet paper. It's possible that there is a tiny amount in the glue that they use to make the cardboard roll the paper towels are on, but it's not likely to have flour in the towels themselves.

Good point, It looks like the Clan Thompson info may not have been updated recently...perhaps we should seek out a more current list from them... pray for me as I sit on hold for the next 10 hours lol :-)


Diagnosed by biopsy and Gluten-Free since March 2003. I have the noisiest stomach known to man. Seriously, how do I turn off this crazy thing??? Sounds like I've got an alien in there...

Go Green! Go White! Go State!

For the ultimate donuts, visit www.celiacspecialties.com. I wouldn't lie to you, I swear!

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Good point, It looks like the Clan Thompson info may not have been updated recently...perhaps we should seek out a more current list from them... pray for me as I sit on hold for the next 10 hours lol :-)

Don't you just love voice mail! :rolleyes::lol:


Shirley

[save the Earth, It's the only planet with chocolate and wine.

It isn't about waiting for the storm to pass...

It's about learning to dance in the rain.

Gluten free since 1989

West Kootenay.... British Columbia

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I know what you mean.

But why didn't McDonalds label wheat in their fries? And why are foreign products relieved of labeling ingredients which are less than 2% of the whole (I read this recently and do not know for sure if this is true)?

What I'm getting at is that apparently there are reasons for not listing certain ingredients that we are probably not aware of. Certainly it is not about celiac or tricking people who have celiac into eating these products, but perhaps by listing certain ingredients companies have to live by or comport with certain regulations that they'd rather avoid for reasons of administrative overhead or expense. I'm just guessing of course.

But the McDonald's example makes me wonder and perhaps could be informative. It would have seemed easy enough for them to list wheat as an ingredient - does anyone know why they didn't? Does anyone know the reason behind the exemption for foreign food products?

"Food labelling is apparently tricky business, to be kind about it, and your suggestion that a company might accept paying a fine rather than list an ingredient would not surprise me one bit."

The problem for me is that it makes no sense whatsoever from a money-making perspective -- and that's what Kraft exists for, to make money. The profits they make from people with celiac and wheat allergies on nuts and Crystal Light isn't even a fraction of a drop in the bucket for them. Yet they would illegally hide wheat and take a chance of massive lawsuits and fines?

richard

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(Hi everyone! Haven't been around in a while)

I come back to us worrying about what we wipe our butts with!?

Oh for crying out loud. I obviously haven't read the whole thread, but I did see where some hard facts were posted and I'm glad for that.

It's stuff like this that starts those funky celiac urban legends :rolleyes:


Alright, don't worry even if things end up a bit too heavy

We'll all float on, alright

Well we'll float on good news is on the way...

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(Hi everyone! Haven't been around in a while)

I come back to us worrying about what we wipe our butts with!?

Oh for crying out loud. I obviously haven't read the whole thread, but I did see where some hard facts were posted and I'm glad for that.

It's stuff like this that starts those funky celiac urban legends :rolleyes:

:lol:

Welcome back Penguin.


"Let food be thy medicine, and let thy medicine be food." - Hippocrates

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I felt ignored for the first few months of joining, but I was in a really terrible place in those first months. Before I ever posted here, I read for days, and finally chose to write to just one popular and prominent member. I got one very polite response back, but no other interaction ever again, and felt very excluded from what seemed like very close and cliquish behavior. [and now I am guilty of same :ph34r: - although I try and keep contact with any newbies who write to me.] Maybe my depression was too overwhelming for this person and other members of the forum. But it amazes me how much attention Srokie is receiving, both positive and negative, when others who read along or post from a place of abject despair can remain ignored. I am also guilty of ignoring new posters, as I spend more time "playing" with my friends....this whole thing just reminds me to try and pay more attention to newbies again. :)

This is a prime example of how misunderstandings happen.

The "prominent and popular" member DingoGirl is talking about is me. And yes, she did get a polite response back. But then Susan you seem to feel you were ignored after that. Let me tell you what was really happening.

I can remember the DAY you PM'ed me, as it just happened to be one of the worst days of my life on this forum. I had just gone through two days straight of being verbally abused by celiachap (yes, the famous celiachap), and had just posted that I was taking a break from here and "hiding in my shell", because I had just taken so much abuse (along with celiac3270), that I had to step away and not come here for awhile. What was happening behind the scenes though, was every single poster who was PM'ing me with their compassion and condolences, I was PM'ing back, "That's okay, I'm fine, but there's a new girl DingoGirl who PM'ed me and I am really worried about her, could you guys make sure she gets a really warm welcome"...... celiac3270 and a few others, Ian, for another, can vouch for this.

So, this is an excellent example of what people feel is happening, as opposed to what is really happening. This is a prime example of how wrong people can be about their perceptions.

Hugs.

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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Karen...........I had no idea at all. I am impressed that you came out and said this....I hope I didnt' offend. I don't now who CeliacChap is - don't know about any of that. You did write me the nicest reply.....I just assumed, seriously, that my depression scared you (and others) off. It was all I could talk about - or try NOT to talk about - for six months. And the breakup I went through, at the same time....I was barely alive.

I am a little overwhelmed that you have posted this......must properly digest. I did feel left out, though, from how much fun you guys were having.....wanted to be a part. Please note, this is the first and only forum with which I've ever been involved - - I also had to learn "netiquette" as someone phrased it. I think I was far too ponderous and heavy in the first months to even be a PART of playing, because I"ve seen others jump right in and "play."

Live and learn. No hard feelings. Thanks for responding - - I feel a little - verklmept? :huh:

Hugs to you. Again - didn't mean to offend. But honestly? I was a little - just the teensiest bit - jealous that you so quickly jumped to welcome Srokie.......when I had felt case aside. Hence the mention.

Must eat rice pudding now and properly ponder. ;)

I love this forum, quirks and all. :)


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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But why didn't McDonalds label wheat in their fries? And why are foreign products relieved of labeling ingredients which are less than 2% of the whole (I read this recently and do not know for sure if this is true)?

I'm virtually positive the 2 percent thing isn't true. Foreign products have to meet the exact same standards as domestic.

McDonalds is not even required by the allergen law to list the top 8 allergens because it's a restaurant. In fact, no law requires them to list allergens at all. Still, they decided to list it after the law came out and then they had it tested. If there's gluten, it's not measurable (which means, I believe, less than 3 parts per million). And it's probably actually zero.

I'm not advising anybody to eat the fries -- that's a personal decision -- but I do believe you're taking a bigger risk just by eating out. In other words, I trust the fries more than I do eating at at most places.

richard

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.I just assumed, seriously, that my depression scared you (and others) off. It was all I could talk about - or try NOT to talk about - for six months. And the breakup I went through, at the same time....I was barely alive.

Susan,

When you joined...you were going through alot...like so many of us. But NO...you were NEVER depressing. I think I met you right after you joined (we taked about C-diff :) )....and since then...good days and bad we've loved having you here. I dont think you could have possibly scared anyone off....especially with those cute dingo's always staring at us. ;)


Rachel

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