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srokie

Kimberly-clark

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i really appreciate everyone helping me, its nice to be able to come to a place and discuss the gluten content of toilet paper without someone looking at you like you should go to the loony bin!


Gluten Free since April '04

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On an asside ... Rachel, how do you know that Kraft has more MSG than any other company? Just curious ... not an attack!

I spent a couple months early last year obssesively researching MSG....mainly because I was doing alot of elimination diets trying to determine why I was still reacting to everything.

I learned alot about how to locate it in ingredients...when its not listed as monosodium glutamate. I learned about the labeling laws regarding MSG and things like that. I joined an MSG message board and learned what I could.

I read the information on several sites and from reading posts on a couple different boards. I guess the information was just as "well-known" and accepted as it is on this board to say that Kraft is the most reliable company as far as labeling WBRO.

Kraft was always the company that was at the top of the list as far as putting the most MSG into their products. But....I'll admit...I never called them to ask if they were the leader in hiding MSG in their foods. :P

Richard asked earlier if there were laws about labeling MSG. There *are* laws....the problem is that that there is NO law that it has to be labeled if its processed into another ingredient. Most people would have no idea if they were eating something that might be loaded with MSG....unless its listed as such on the label.

Thats why I say...if Kraft is the company that is taking advantage of this....more than any other company....why should I give them all of my trust??

If I wasnt on the slowest computer in the world right now...I'd go on a search and try to provide links from what I'd read last year. :)

I have no idea if this is related to MSG or not but for years before I got sick everytime I ate Kraft Mac & Cheese I got all sweaty with terrible cramps and diarreah. It didnt happen with any other brand of mac & cheese...only Kraft....and I ate plenty of mac and cheese all those years. It was kind of a joke in my house if I somehow got stuck with eating Kraft M & C...we all knew what would happen. :(

I never knew why I had problems with Kraft but when I learned this about the MSG...it definately struck me. <_<


Rachel

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I spent a couple months early last year obssesively researching MSG....mainly because I was doing alot of elimination diets trying to determine why I was still reacting to everything.

I learned alot about how to locate it in ingredients...when its not listed as monosodium glutamate. I learned about the labeling laws regarding MSG and things like that. I joined an MSG message board and learned what I could.

I read the information on several sites and from reading posts on a couple different boards. I guess the information was just as "well-known" and accepted as it is on this board to say that Kraft is the most reliable company as far as labeling WBRO.

Kraft was always the company that was at the top of the list as far as putting the most MSG into their products. But....I'll admit...I never called them to ask if they were the leader in hiding MSG in their foods. :P

Richard asked earlier if there were laws about labeling MSG. There *are* laws....the problem is that that there is NO law that it has to be labeled if its processed into another ingredient. Most people would have no idea if they were eating something that might be loaded with MSG....unless its listed as such on the label.

Thats why I say...if Kraft is the company that is taking advantage of this....more than any other company....why should I give them all of my trust??

If I wasnt on the slowest computer in the world right now...I'd go on a search and try to provide links from what I'd read last year. :)

I have no idea if this is related to MSG or not but for years before I got sick everytime I ate Kraft Mac & Cheese I got all sweaty with terrible cramps and diarreah. It didnt happen with any other brand of mac & cheese...only Kraft....and I ate plenty of mac and cheese all those years. It was kind of a joke in my house if I somehow got stuck with eating Kraft M & C...we all knew what would happen. :(

I never knew why I had problems with Kraft but when I learned this about the MSG...it definately struck me. <_<

is MSG the thing that doesn't have gluten in it, but still makes alot of people sick with tummy aches?


Gluten Free since April '04

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That's DEFINITELY problematic for people with actual wheat allergies too! See, i just learned something.

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

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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is MSG the thing that doesn't have gluten in it, but still makes alot of people sick with tummy aches?

YES! It doesn't gluten in it but it has some really bad effects on people. MSG stands for monosodium glutamate. I think (not sure) that it's a flavor enhancer and some people get very ill from it. A lot of Chinese foods (not that I eat them anymore) have MSG in them and on menus or advertisements you will sometimes see MSG Free.


***************************

Beverly

Gluten free since 2005

In the midst of winter, I found there was within me an invincible summer.

Albert Careb

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i really appreciate everyone helping me, its nice to be able to come to a place and discuss the gluten content of toilet paper without someone looking at you like you should go to the loony bin!

Have you not seen the "You Know Your a Celicac If..." Post.

Could some one post this link? I know, computer 101 starts tomorrow. <_<


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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To my knowlege, no one here eats toilet paper, LOL, but what do I know.

Lisa- What? You don't eat toilet paper? What's wrong with you!!!!!!!!!!!!!!!!!!!!!!!!!! I can't find any good gluten-free, soy free crackers so I use it for cheese!


***************************

Beverly

Gluten free since 2005

In the midst of winter, I found there was within me an invincible summer.

Albert Careb

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is MSG the thing that doesn't have gluten in it, but still makes alot of people sick with tummy aches?

Yeah....it can cause stomach aches, diarreah and other symptoms. It totally gluten-free but still not good for us.


Rachel

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Yep, MSG does not have gluten but it has some awful side effects, this does vary person to person but its personal opinion to stay away from it. I don't stay away from it but most of what I eat doesn't include it.


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

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Yes we have the right to be skeptical. I have had people send "important info" to me that Matt will outgrow his diabetes and only need pills once he is an adult. That is the result of confusion with the old term "juvenile diabetes" and "adult onset". People figured once the juvenile became an adult it would "convert".

My kids drink crystal light from time to time and eat peanuts. My daughter is ultra sensitive and gets neurologic symptoms within hours of cross contamination. Thus far - no issues with either. Yes the companies do list the ingredients. Nuts are legumes and some celiacs have difficulty with legumes (dairy and nightshades too).

I am the type of person that would like to see links to the newsletter or whatever source for the info...otherwise it is just antecdotal and the word of one person passing it on.

I could also find people that claim certain herbs or drinks or cleanses will cure Type 1 diabetes and that if you breastfeed til one year and avoid dairy then type one diabtes wont happen. Too bad that isnt true, I breastfed my son (longer than my daughter) - didnt introduce dairy til after age 2 and he never got pablum - he had mashed banana, sweet potatoe, potatoe etc. We never cracked jar of baby food in our life.. prepared everything and whipped it in the blender.


Sandy

Type 1 diabetes - 1986

hypothyroid -1993

pernicious anemia

premature atrial beats

neuropathy

retinopathy

daughter is: age 15

central hypotonia and developmental delay

balance issues (rides an adult 3 wheel bike)

hypothyroid 1996

dermatographia - a form of angioedema 2002

celiac 2004 - by endoscopy

diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet

recovered from Kawasaki (2003)

lactose intolerant - figured out in Oct/06

Gilberts syndrome (April/07)

allergy to stinging insects

scoliosis Jan 2008

nightshade intolerance - figured out April 2008

allergy to Sulfa antibiotics

son is 13

type 1 diabetic - 2003 diagnosed on his 9th birthday

celiac - 2004 by endoscopy

lactose intolerant - figured out Nov/06

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Ok...to answer a previous post about MSG

US laws allow "natural flavoring" to consist of "protein hydrolysates" containing free glutamic acid. (That's why they do it - to free glutamate to act like MSG so they can declare a "clean label" while misleading the consumer.)

Here is one list of foods/companies with MSG in them

Hamburger Helper Microwave Singles


Rachel

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I can understand your point, Richard, but we have to remember who we are dealing with here. She's a "new kid". Does she know the rules? Of course not. Should we give her the benefit of the doubt and post in a kindly manner what our beliefs are, and how things are usually done around here? Of course we should have. Did we? I don't think so......

Karen

Srokie is 20, and she's in a top-something-or-other college. She grew up with cpus, and would have already known about discussion board etiquette. Being in college, she would also already know that quoting a friend of a friend that read something in a magazine is not acceptable as fact. She should also be beyond the "you don't agree with me, so I'm taking my toys and going home" stage. Is it unrealistic of me to expect her to behave in a manner that is appropriate to her age and social status? No.


Dessa

The Lord bless you and keep you; the Lord make His face shine upon you and be gracious to you." Numbers 6:24-25

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Well I do not always have to ingest gluten to have a reaction. I have figured out that when I wipe bread crumbs off the sideboard and then itch my eyes (before I could wash my hands) I had a major eye allergy reaction that I am sure came from the gluten. I have had major eye allergies that I take eye drops for during the last 3 or 4 yrs, and I could not figure out why the eye allergies didn't coincide with weather or pollen. I use Angel Soft toilet paper too and didn't realize that it wasn't gluten free and it could affect me. I also have asthma, and that has been acting up the last couple of days, but I have no other symptoms of being glutened, so I'm wondering if being around the glue on the toilet paper and paper towel rolls can cause my asthma to act up? I wasn't aware that I should wash my hands after handling the beginning or end of the roll, but I'll certainly be careful from now on!!


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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Srokie is 20, and she's in a top-something-or-other college. She grew up with cpus, and would have already known about discussion board etiquette. Being in college, she would also already know that quoting a friend of a friend that read something in a magazine is not acceptable as fact. She should also be beyond the "you don't agree with me, so I'm taking my toys and going home" stage. Is it unrealistic of me to expect her to behave in a manner that is appropriate to her age and social status? No.

I think regardless of where she goes to school.....she's still a young girl who was very sick. I think right now she's in the frame of mind of "WOW....my Dr. is a GENIUS" She's absolutely thrilled to be back on the road of good health...thinks the world of the woman who put her on that path...and feels like she wants to share that with everyone. Since all the world cant relate....she was excited to find a board where she could share her excitement....with people who would understand.

It turned out that she ended up feeling like we were LESS understanding than the world of non-celiacs.

I dont think social status has anything to do with it either....it has nothing to do with her health or how she is feeling right now with regards to getting better.

I dont think we should expect anything more from her than we would expect from *any* excited, newly diagnosed 20 year old.

She may have been misinformed but havent we seen ALOT of misinformed newbies post here?? Many of them were given false information from their own M.D. or GI. People jumped all over this girl because she was taking the word of the person who diagnosed her...as so many of us have done. Alot of it had to do with this person being a doctor of divinity rather than an M.D. It carried over into all of her threads.

I just think as a whole....we could have been more kind and welcoming and less judgemental and condescending. There are gentler ways to point things out.....I would have been on the defensive if I were in her shoes...and I would have defended my Dr. in the same way that she did.

I would have left the board too...and not because I'm in the "you dont agree, so I'll take my toys home" phase....but because I would have felt like this board was most unpleasant.

Personally, I would rather newbies not get that impression of the board...I would hope that they would stick around and learn more from a group of nice and concerned Celiacs...rather than be attacked because they are new and misinformed.


Rachel

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Well I do not always have to ingest gluten to have a reaction. I have figured out that when I wipe bread crumbs off the sideboard and then itch my eyes (before I could wash my hands) I had a major eye allergy reaction that I am sure came from the gluten. I have had major eye allergies that I take eye drops for during the last 3 or 4 yrs, and I could not figure out why the eye allergies didn't coincide with weather or pollen. I use Angel Soft toilet paper too and didn't realize that it wasn't gluten free and it could affect me. I also have asthma, and that has been acting up the last couple of days, but I have no other symptoms of being glutened, so I'm wondering if being around the glue on the toilet paper and paper towel rolls can cause my asthma to act up? I wasn't aware that I should wash my hands after handling the beginning or end of the roll, but I'll certainly be careful from now on!!

A lot of eye problems can be caused by dust mites, especially in the winter when our homes are shut up more.


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 guess that could be a possiblility, but I'm quite confident it wasn't dust mites. We are very careful and we have air purification units all over the house because my son has had major vomiting problems since he was born. We have top of the line air purification systems in every room, we wash everything in hot water and dry it all in the dryer. I shampoo my carpets monthly and we are just extremely careful about that stuff. All of our pillows and mattresses have mite proof mattress pads as well. I'm sure we could still have some in the house, but this is the first time since going gluten free that I've had eye issues, and then I wiped up bread crumbs and accidently rubbed my eye and then shortly after I had a major eye reaction so I'm sure it was the gluten. If not then it was just a weird cooincidence IMO.


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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Finally--a voice of reason! Thank you, Rachel.

Every time I come on here, I am amazed at the unnecessary hostility and the condescending attitudes.

We're supposed to be helping each other, not attacking each other. I think everyone who attacked Srokie owes a general apology to everyone on this board. I'd say a big apology is owed Srokie, but apparently, she won't be reading this thread anymore, and who can blame her?

It's like junior high school all over again here. One person attacks, and everyone else joins in.

i agree completely!!! i was so excited when i first found this site and got some pretty useful info from it.... but i havent posted in MONTHS ..i used to check up on the board 3 or 4 times a day.. now its 3 or 4 times a month. many of the veteran posters have left here because of petty arguments and attacking and childish behavior on here. and in my opinion theres an over all feeling of " holier than thou" attitude.

you know..we have plent of people in our lives that dont understand what we are going through and this should be a place where we can come and vent and ask and discuss and not feel judged, but unfortunatly.. its not.

i have been questioning leaving the board quite a few times and now i think i will be.


coleen

diagnosed 1/2005

gluten free since 1/2005

XVEGANX

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As a newbie I have found this site to be helpful as well.

As for who eats toilet paper~ well, that would be my lovely 19 month old who got a roll from the storage area the other day and was stuffing it in her mouth and running away from me laughing. :lol:

Very cute and funny~ but now I have to be more careful that she does not get glutenized from TP in the future!


Jen

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Electra, I to have problems with eye allergies. I work for a very good optomitrist and he is always who I go to first. Sometimes it's the oak trees, sometimes it's the neighbors fireplaces (allergic to smoke), sometimes it's hormonal problems. I will tell all of you--when you do have a problem with your eyes, go to an eye doctor, not your family doctor. Usually after a patient sees their family doc, they end up with us anyways and taking a lot more time to get better.


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 havent seen you or anyone else come under attack in the same rude and unwelcoming manner that Srokie was. She started 3 topics and was insulted and attacked in every one of them. I dont think shes walking away with her tail between her legs. I think shes fed up....plain and simple....and I dont blame her.

If you look at Stokie's headings, "NO celiacs can have soy" and "toilet paper is dusted with flour!" (not exact wording), I think these very bold statements just incite passionate responses, period. I truly think it was all in her presentation, and as Scott pointed out, lack of valid resources to back it up. I may be totally and completely wrong in this also - - but I felt she was trying to get a reaction, as well...stirring the pot. You can't make blatant statements of the type she made without expecting all kinds of flack....

I have never felt attacked here. I do feel ignored sometimes, which can be frustrating, but I keep coming back because this place offers such a wealth of information. People here are articulate, intelligent, and for the most part, willing to listen to various points of view.

So let's keep sharing and playing nice while we search for answers on this.

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. :)

I wonder if some of the people that "attacked" her did so because they sensed the same attitude in her posts that I did? It's hard to convey tone and meaning over a message board, but I sensed a lot of attitude, that might not be intentional, emanating from her posts.

This is how it came across to me also....lots of 'tude.

I think regardless of where she goes to school.....she's still a young girl who was very sick. I think right now she's in the frame of mind of "WOW....my Dr. is a GENIUS" She's absolutely thrilled to be back on the road of good health...thinks the world of the woman who put her on that path...and feels like she wants to share that with everyone. Since all the world cant relate....she was excited to find a board where she could share her excitement....with people who would understand.

Personally, I would rather newbies not get that impression of the board...I would hope that they would stick around and learn more from a group of nice and concerned Celiacs...rather than be attacked because they are new and misinformed.

We defnitely should have been kinder. But, if Srokie presents all of her information to the world (not just written forums) in the same fashion, she will be risking and most likely inciting attack. I know this.....because I was the same way in my youth.


SUSIE

Diagnosed January 2006

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

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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 (you know who you are), 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.]

Very insightful Susan.........Very insightful. Smart Smart lady :)


Jessica

Gluten Free since 12-31-2002!!

Kansas

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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 (you know who you are), 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. :)

On the point of reading before posting... It is part of "nettiquette" to read a forum for a while before starting to post. This practice goes back to the old newsgroups. You need to get a feel for how the community interacts, and what topics are discussed before jumping in...it also helps to do some searching through old posts to see if something has already been discussed/answered. I do this for every forum I join or have joined and I think it's good practice.

Once I did start posting, I got some welcoming posts. But I have felt largely unnoticed, especially when I respond to someone else's post directly with a question and receive no response back. I definitely feel like it is hard to break into the close (cliquish?) group. It can also be hard to see some get openly welcomed and included when others get a lukewarm response. Silence can feel just as hurtful as being attacked.

Michelle

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If we are going to talk about "nettiquette" (LOVE that word, Michi! :) ), it seems like the "attackers" are using their perception of Srokie's attitude as justification for their own poor "nettiquette."

Two wrongs do not make a right.

As far as assuming a certain level of social skills, it has been discussed in other threads on this board how prevalent autistic spectrum disorders (and their associated lack of social skills) are among celiacs. Do we have the right to assume a certain level of social skills? Well, maybe. Do we have the right to attack when those social skills are not present? I don't believe so.

The bottom line here is that Srokie OBVIOUSLY meant to help; those who attacked her sure as heck weren't trying to help her. Viciousness has never helped anybody.

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If we are going to talk about "nettiquette" (LOVE that word, Michi! :) ), it seems like the "attackers" are using their perception of Srokie's attitude as justification for their own poor "nettiquette."

Two wrongs do not make a right.

As far as assuming a certain level of social skills, it has been discussed in other threads on this board how prevalent autistic spectrum disorders (and their associated lack of social skills) are among celiacs. Do we have the right to assume a certain level of social skills? Well, maybe. Do we have the right to attack when those social skills are not present? I don't believe so.

The bottom line here is that Srokie OBVIOUSLY meant to help; those who attacked her sure as heck weren't trying to help her. Viciousness has never helped anybody.

Well said. :rolleyes: And it seems like people aren't willing to let it go. I thought we were on to discussing products and reactions. :blink:


***************************

Beverly

Gluten free since 2005

In the midst of winter, I found there was within me an invincible summer.

Albert Careb

36_35_6[1].gif

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