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penguin

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Rikki Tikki Explorer

I guess I just don't get it. :huh: If there is a specific post that is bothersome why can't one just ignore it, that's what I do. It seems to me we should be more tolerant of each other. How sad is this, we lose someone whose wit and compassion is a good thing and has helped many. Why can't we just talk about what is bothering some people. We are many different people that have many different views, whose to say which is right and which is wrong?

Anyway, I find this whole thing very sad and wish you would just talk about what it is. But it's your choice, hope you change your mind. :unsure: That's my 2 cents.

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CarlaB Enthusiast
I guess I just don't get it. :huh: If there is a specific post that is bothersome why can't one just ignore it, that's what I do. It seems to me we should be more tolerant of each other. How sad is this, we lose someone whose wit and compassion is a good thing and has helped many. Why can't we just talk about what is bothering some people. We are many different people that have many different views, whose to say which is right and which is wrong?

Anyway, I find this whole thing very sad and wish you would just talk about what it is. But it's your choice, hope you change your mind. :unsure: That's my 2 cents.

I agree Tavi ... I am sad to see Chelsea go ... there are posts I ignore ... but I was hesistant to say something in case I was one who contributed to the problem.

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Rikki Tikki Explorer
I agree Tavi ... I am sad to see Chelsea go ... there are posts I ignore ... but I was hesistant to say something in case I was one who contributed to the problem.

I agree Carla. Remember when I had posted once a question to you and Morgan and then thought it might be taken wrong so posted that I didn't mean it that way and both of you accepted my apology. See we talked it out. :D To me that's just the way to do things and it usually works out fine. I guess if someone wants to leave then they can. But why post that it's your intention to leave and just upset people? Call me crazy :unsure::unsure::unsure: but I think it would be better to just leave for a while if that's what you want to do without causing a ruckus. I did pm Chelsea but she didn't answer so gotta let it go B)

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penguin Community Regular
I guess I just don't get it. :huh: If there is a specific post that is bothersome why can't one just ignore it, that's what I do. It seems to me we should be more tolerant of each other. How sad is this, we lose someone whose wit and compassion is a good thing and has helped many. Why can't we just talk about what is bothering some people. We are many different people that have many different views, whose to say which is right and which is wrong?

Anyway, I find this whole thing very sad and wish you would just talk about what it is. But it's your choice, hope you change your mind. :unsure: That's my 2 cents.

OK, I've gotten some inquiries as to why I'm leaving. I promise, it's not any one person, it's not any one thread, it's not any one post. I ignored threads, posts, and inflammatory people as long as I could. The turning point came when I began to have to ignore most posts, most threads. There was a lot of bickering, accusations, and conspiracy theories that just took over the entire board. I'm just sick of having to ignore most everything that comes across the page. It's making me want to scream sometimes. *WARNING* The following statement is going to make a lot of people angry: I hate that there is a hatred toward the medical community. I understand that most people have had bad experiences with doctors, I'm included in that group, but I don't think that's a reason to throw out the entire institution. What's worse is that alternative medicine is deified, when there are just as many quacks and not as much research to back the legit alternative treatments up. Heaven forbid someone tries to get a medical opinion for some kind of problem, they're immediately shot down on this board anymore.

I'm tired of the overall paranoia. There are only so many threads I can ignore, only so much outright incorrect advice I can try to counteract. I'm sorry you might think that this is me being intolerant, but it's me being quite annoyed with the whole production. I don't feel the need to be more specific, because it's not a specific problem.

And Tavi, I did not ignore your pm, I just haven't been around the computer much today.

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rinne Apprentice

The way I feel these days is that my energy is so precious to me that I must decide carefully what I will do with it and as a result, I find I can no longer defend my position nor can attack another's.

Chelsea, it has been a delight reading your posts, thank you for them. I wish you well in whatever you endeavor.

Blessings

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Rikki Tikki Explorer

I respect your decision to leave, I just think you have given a lot of really good information to people and wish you could just ignore what you don't like. If that's impossible then I am sad but I understand. I think as a whole people are upset with the medical community because many of us have been misdiagnosed for many years, that being said I don't dislike the whole medical profession, for myself I just wish I had listened to my body earlier before this whole celiac thing took me down, but I didn't so I share some of the responsibility. Oh, well, I think I am making more of a mess of trying to put my thoughts to this. Sorry, hope you change your mind <_<<_<<_<

Best of luck to you. Come back soon......

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Guest nini

I pm'ed you Chelsea...

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AndreaB Contributor

I am cautious of both mainline medical and holistic/natural medicine. I think both have good and bad points. Please keep in touch. I agree, this board tends toward anti doctor. I have decided to start seeing an MD that doesn't use all the drugs and tries to get to the bottom of something more naturally....mainly by supplementation I believe. He's branched out into allergies and toxicity. He works on his own so his job doesn't require him to follow the pack or lose his job.

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CarlaB Enthusiast
I am cautious of both mainline medical and holistic/natural medicine. I think both have good and bad points. Please keep in touch. I agree, this board tends toward anti doctor. I have decided to start seeing an MD that doesn't use all the drugs and tries to get to the bottom of something more naturally....mainly by supplementation I believe. He's branched out into allergies and toxicity. He works on his own so his job doesn't require him to follow the pack or lose his job.

I'm seeing the same kind of MD, she even has an acupuncturist in her office. I find all my health issues are sub-clinical, so the docs don't see them as a problem. With her and her interest in health, not treating disease, she sees it a little differently. We do need modern medicine, but docs don't really know much about health care and treating people who are just feeling bad and not diseased. A lot of people here are very anti-doctor, probably because of the way they have been treated by so many -- like it's all in their head. I think we need both alternative and conventional, but right now, my personal health needs the alternative care, even my MD said that based on conventional medicine, I'm perfectly healthy -- of course that doesn't explain why I couldn't even get out of bed! So, I'm being treated with acupuncture, herbs and supplements, along with lifestyle and dietary changes -- and it's working -- I can do simple tasks now, but I still have a long way to go.

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eKatherine Rookie
OK, I've gotten some inquiries as to why I'm leaving. I promise, it's not any one person, it's not any one thread, it's not any one post. I ignored threads, posts, and inflammatory people as long as I could. The turning point came when I began to have to ignore most posts, most threads. There was a lot of bickering, accusations, and conspiracy theories that just took over the entire board. I'm just sick of having to ignore most everything that comes across the page. It's making me want to scream sometimes. *WARNING* The following statement is going to make a lot of people angry: I hate that there is a hatred toward the medical community. I understand that most people have had bad experiences with doctors, I'm included in that group, but I don't think that's a reason to throw out the entire institution. What's worse is that alternative medicine is deified, when there are just as many quacks and not as much research to back the legit alternative treatments up. Heaven forbid someone tries to get a medical opinion for some kind of problem, they're immediately shot down on this board anymore.

I'm tired of the overall paranoia. There are only so many threads I can ignore, only so much outright incorrect advice I can try to counteract. I'm sorry you might think that this is me being intolerant, but it's me being quite annoyed with the whole production. I don't feel the need to be more specific, because it's not a specific problem.

Brava!

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Carriefaith Enthusiast

We will miss you here :(

I haven't really been around enough lately to notice too many threads about paranoia and conspiracy theories so I can't really comment on that, but I've noticed that the board has changed over the past few months. I find that there are less threads for helping people with celiac disease and more threads on other topics than there used to be. I try and help when I can, but I really find that there are less and less threads where I can help.

I hope you decide to stick around.

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mouse Enthusiast

Thank you Chelsea for clarifying your reasons for leaving. I agree 100% with what you had to say. I also believe in mainstream doctors' and also in alternative treatments. Both are useful. But, just like we have to investigate whether a doctor is a good one, we also have to investigate the alternative treatment. I was not diagnosed for over 30 years (really almost 40) of so many illnesses. But, I need my doctors'. I am just selective on who they are and how they respond to me. One of the problems that has arisen on this forum, is that if we do not agree with a poster, we get slammed. If I did take the time to correct some members misinformation, then again, I would be slammed. I have enough trying to get better and just trying to deal with each day, without the stress of all that animosity. So, like so many others, I now usually post in the frivolous threads and not the serious ones. This forum was so helpful to me when I first joined. It is too bad that we have veered off of that path in so many cases.

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Guest Robbin

:) I agree, Celia, that some of the blame rests on ourselves, sometimes. For others, maybe we should have been more aware of our own health and been more selective with the doctors we chose. I think we all agree that the medical profession has its limitations, we have to take responsibility too. Whether in choosing the RIGHT doctor, or even just listening to our doctors.

I have heard others on here speak highly of their doctors, and I envy that. I have not had great luck in the dr. department, but am still looking and some of the blame is my insurance.

I have to agree with mouse too. It is sometimes better to stay out of some of the "discussions". Hey, let's just help each other and newbies and get along?

btw--You are a great group of people. Penguin, you are a wonderful, eloquent girl and I hope you become a famous chef and visit us from time to time.

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AndreaB Contributor

I tend to post on the newbie threads, enterolab threads.....stuff like that. I have followed some of the more intense threads but it got to be too much.

Basically I don't have much time to search out new threads and a lot of times only look at what's on the top of the new posts page. I miss a lot of things that way, just discovered a thread I could help out on today because I took the time to look through some posts on a certain topic.

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Rikki Tikki Explorer
I have to say... I feel so...so... liberated now... like I've come out of the closet with my views :lol:

I've learned alot here and have had much fun too.... all in all I really think this is a pretty great site!

Have :D:D:D to agree with this

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VydorScope Proficient

This site tuaght me so much about celiac disease and my son is "normal healthy 3yr" becuase of it (well cept his gluten-free diet)... but in the very breif time I have been here, the site has realy degraded. I have to agree with Penguin... too much info burried here to leave yet, but my posting/reading is way way way down....

Gonna miss you pengiun... I hope to see you agian someplace!

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Guest Robbin

What you have said is true Vincent, and penguin. There is a newbie right now in "Pre-dx and testing" needing help and I was wondering if anyone has a complete blood panel list for her, but no one is reading the newbies, we get caught up in wondering why the site is going downhill and forget to breathe some life into it. People helped me-heck probably saved my life-most of you here as a matter of fact. This is a good site, we could still do better, myself included. Sorry for the rant....please don't get mad everyone :blink: .

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ÆON Newbie
This site tuaght me so much about celiac disease and my son is "normal healthy 3yr" becuase of it (well cept his gluten-free diet)... but in the very breif time I have been here, the site has realy degraded. I have to agree with Penguin... too much info burried here to leave yet, but my posting/reading is way way way down....

Gonna miss you pengiun... I hope to see you agian someplace!

I've read what Penguin had to say and I'm very sorry to lose her but maybe it would be better to have a few threads and some discussion about what has degraded on the site.

Speaking as a newbie, I'd hate to see experienced people dropping like flies (off the site) because things went downhill. I'm still a bit mystified by the degradation that is being referred to (not suprisingly I guess). <_<

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Rikki Tikki Explorer

Robbin:

I did read that and usually welcome all the newbies. I just don't know what blood tests to order except for the celiac blood panel. I don't have the wealth of information others do, this site probably saved me years of illness, but I also enjoy the humor that some people bring into it. And if there is a site that I don't like I try to stay away from it.

I just appreciate everyones point of view most of the time. :blink:

By the way welcome AEON, is that right? The way I spelled it?

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gfp Enthusiast
I respect your decision to leave, I just think you have given a lot of really good information to people and wish you could just ignore what you don't like. If that's impossible then I am sad but I understand. I think as a whole people are upset with the medical community because many of us have been misdiagnosed for many years, that being said I don't dislike the whole medical profession, for myself I just wish I had listened to my body earlier before this whole celiac thing took me down, but I didn't so I share some of the responsibility. Oh, well, I think I am making more of a mess of trying to put my thoughts to this. Sorry, hope you change your mind <_<<_<<_<

Best of luck to you. Come back soon......

Erm, is that a cop-out by me?

Just because rikki tikki said it for me?

OK....

Well the post raises so many seperate issues...

First of all Chelsea....

All boards have a life of their own BUT you a part of that life.

The content of threads is pretty much like migration... it shifts one way and then another.

The one control you exert are your own posts so by leaving you will push it slightly more in the direction you don't like! On the whole the nature is cyclic .. it leans one way then the other.

Secondly ...these boards are a community. All communities have a wide range of peope, even if you decided to live in a shaker community you will find the radical ones and the traditional ones ...

This board brings together diverse people from different backgrounds and even countries... so it is many times that difference.

Thirdly .. "conspiracy theories"....

This is a real useful term for anyone involved in trying to cover up information. Its like shouting gay or commie in the McCarthy era.

However the word theory is what seperates it.... there is so much hidden in plain view protected from being known by Joe Public simply by crying conspiracy theory.

It is not a theory that drug companies eeek to create life time drugs and not to cure, its a documented fact.

Its not a theory that the food industry wants to push processed food down our throats...

A conspiracy theory is aliens in Roswell.

Exactly like I said above you leaving will push this baord incrementally away from your perceived ideal of this board. In the same way if you are ready to dismiss evidence as conspiracy theory then you are adding to that. If you want to debunk it then you just post the facts. If you look and you can't find the facts then .... perhaps there is some merit in the theory...unless of course its a self defeating theory like the aliens came then brainwashed everyone to prevent anyone remembering!

Let me quote one of my own....

When I posted about fruit being kept in cold storage for months and additionally being sprayed with candida .. this is not a conspiracy theory. The facts are there for anyone to find.... its just possible because people don't wanna look or accept it.

Now if I had a candida problem I would want to know this but iots just another fact hidden in plain sight.

The Somebody Else's Problem field (SEP field) is a fictional technology from The Hitchhiker's Guide to the Galaxy "trilogy" by Douglas Adams. It is a cheaper and more practical alternative to an invisibility field.

Concept

Spoiler warning: Plot and/or ending details follow.

Simply put, an SEP field is an energy field similar to an invisibility field. When somebody, or something, is surrounded by a SEP field, the human brain perceives it as "somebody else's problem", and therefore will be incapable of paying attention to the object (or even seeing it, or recognizing its existence) unless it is being specifically looked for. A primary example of this was given in the third book Life, the Universe and Everything, when a UFO (a spaceship powered by the Bistromathic drive owned by the character Slartibartfast) lands in the middle of a cricket ground during a match, and the assembled crowd completely ignores it. Another prime example occurs when the aforementioned ship's field is extended so that the characters fail to notice the fact that they cannot breathe or the fact that the asteroid that they are standing on does not have enough gravitational force to hold them down.

The SEP field requires much less energy than a normal invisibility field (a single torch battery can run it for over a hundred years) due to the natural propensity of humans to see things as Somebody Else's Problem.

:unsure:

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VydorScope Proficient

GFP,

I think what you miss, is that majority of the ppl comming here are Mothers who do not have time to dig the all the crap and just need some respectfull help. Respectfull help is being lost in everyone's pet cuase and wacko theroies. Not saying you post wacko theroies, talking in vast general here.

For example if I post asking gluten conten of <random junk food>, I do not need a lecture on why junk food is not good for me, nor do I need a lecture on the FDA control of <insert random ingredient>, or some talk about how Godzilla runs the goverment and we are all gonna die form lack of oil. I just need to know if the snack my son might have just gotten (or will be exposoded to at some random location/time) has gluten or not. Its becoming harder and harder to get that info here.

And the most imporant thing... This is a volentery site to come get help. If you do not feel it is a postive helpful place, you should leave and find one. This is not a job where you have to go, or a community where you have large amount of money invested in a home. Its is an free internet forum.

This is not the only celiac disease forum, jsut used to be the best... only time will tell wether if it will continue to degrade or get better.

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jerseyangel Proficient
And the most imporant thing... This is a volentery site to come get help. If you do not feel it is a postive helpful place, you should leave and find one. This is not a job where you have to go, or a community where you have large amount of money invested in a home. Its is an free internet forum.

This is not the only celiac disease forum, jsut used to be the best... only time will tell wether if it will continue to degrade or get better.

Very true...

My personal feeling on all of this--I'm hoping that what others have stated is true, that these things tend to be cyclical. Since this is the first on-line group I've ever been a part of, I'll take their word for it. It's probably a lot like real life with ups and downs :D

This board was so helpful to me in the beginning--at first I was just happy to be getting information on how to live with this disease day to day. Then, I found that I was actually becoming part of this wonderful community. I've made friends here who are as dear to me as any I have in the "real world".

I try to balance my "socializing" with being as much help as I can to the newer members. I volunteered to be a moderator because I was spending so much time here that I thought I may as well make myself useful :lol:

I choose to stay and do whatever small things I can to try and keep this the best Celiac resource on the net--or anywhere, for that matter ;) If all of the people who truly care about the site leave in protest, what are we then left with?

This board was here when I needed it, and I won't forget it :)

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gfp Enthusiast
GFP,

I think what you miss, is that majority of the ppl comming here are Mothers who do not have time to dig the all the crap and just need some respectfull help. Respectfull help is being lost in everyone's pet cuase and wacko theroies. Not saying you post wacko theroies, talking in vast general here.

For example if I post asking gluten conten of <random junk food>, I do not need a lecture on why junk food is not good for me, nor do I need a lecture on the FDA control of <insert random ingredient>, or some talk about how Godzilla runs the goverment and we are all gonna die form lack of oil. I just need to know if the snack my son might have just gotten (or will be exposoded to at some random location/time) has gluten or not. Its becoming harder and harder to get that info here.

And the most imporant thing... This is a volentery site to come get help. If you do not feel it is a postive helpful place, you should leave and find one. This is not a job where you have to go, or a community where you have large amount of money invested in a home. Its is an free internet forum.

This is not the only celiac disease forum, jsut used to be the best... only time will tell wether if it will continue to degrade or get better.

I'm chopping this up a bit to answer... just to make the answer easier

For example if I post asking gluten conten of <random junk food>, I do not need a lecture on why junk food is not good for me, nor do I need a lecture on the FDA control of <insert random ingredient>, or some talk about how Godzilla runs the goverment and we are all gonna die form lack of oil. I just need to know if the snack my son might have just gotten (or will be exposoded to at some random location/time) has gluten or not. Its becoming harder and harder to get that info here.

Erm to be honest that is something better done as a searchable list not a actual forum.

The problem is as you know so well yourself is that these lists keep changing.

Is this a conspiracy? No its the way companies work... but different companies work in slightly different ways.

In the end they ALL want to make money, that is why they are in business ... so a simple answer on one product is not possible... the best in many cases is from product number xxxxxxx to xxxxxxx brand X cereal was gluten-free but from xxxxxxx they switched production etc. etc.

I'm not picking on you here but you made a big question as to WHY for the cereal... the reason I'm not picking on you is its a totally valid question.... the answer in its shortest form is because its not financially the best thing to do for them according to their studies. (or it could be just a random golf game with some supplier offering a cheaper product??? )

in particular

Its becoming harder and harder to get that info here.

Yes but perhaps that reflects the growing number of diagnosed celiacs, new legislation and new (inventive) ways to bypass it? At least in some cases?

One problem with junk food as a whole is the more processed a food is the more likely to contain hidden gluten. However many people here also have weight issues

And the most imporant thing... This is a volentery site to come get help. If you do not feel it is a postive helpful place, you should leave and find one. This is not a job where you have to go, or a community where you have large amount of money invested in a home. Its is an free internet forum.

This is not the only celiac disease forum, jsut used to be the best... only time will tell wether if it will continue to degrade or get better.

This is really where I disagree......

You see the same thing on many forums.... I'll take techy ones as an example.

Someone posts some really simple questions... they get answered and the person starts getting to grips with whatever technology. Sooner or later many start ranting that noone is answering their questions!

The reason is usually they have gone into a specialist area and no-one knows the answer.

When you are dealing with health then its important to be a bit more explicit (IMHO) ... in particualr junk food because this is what many noobies get pointed towards... things that actually SAY gluten-free on the packet.

Finally

This is not a job where you have to go, or a community where you have large amount of money invested in a home. Its is an free internet forum.

There are more important things in life than money. Health is one of them IMHO.

As it happens I quit my last job for health reasons .. at least the travelling and being put into CC issues and even getting anything to eat at all were a large part of this.

This leads to all sorts of other contraversial subjects like "home schooling" ... in the end if your child is being poisioned through negligence and ignorance at school then its a valid reason to home school. This in itself can lead to other discussion....

The most important thing is that just because money isn't invested doesn't mean just walk away when it stops being helpful.

Personally I find I have learned a lot here but equally I think that means I should now put-back.

If everyone who gets to a certain level of understanding leaves because they find they are putting in more than they receive then truly the board is doomed or it will at best be the blind leading the blind.

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VydorScope Proficient
Erm to be honest that is something better done as a searchable list not a actual forum.

Im only gonna repsond to this point, cuase I think this is very key. I completely disagree with that statement. Food ABCXYZ might be on a list as gluten-free, but in recent days Joe, Tom, Sue, and Sally all tried it and got glutened. That information would not be in a list, and can not realy be gotten any other way then a forum (or local support group). THat information is often far more vaild and real then the lists.

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CarlaB Enthusiast
Im only gonna repsond to this point, cuase I think this is very key. I completely disagree with that statement. Food ABCXYZ might be on a list as gluten-free, but in recent days Joe, Tom, Sue, and Sally all tried it and got glutened. That information would not be in a list, and can not realy be gotten any other way then a forum (or local support group). THat information is often far more vaild and real then the lists.

True, there are foods I avoid because I know they've been a problem for some here even though some of them are sold as gluten-free.

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