Catch Y'all Later.

[NicoleAJ]

Chelsea,

I'll certainly miss your poise and wit--you're always so informed on just about everything. I can respect your decision, though, and certainly agree that there have been some unpleasant threads around these days. It seems that even the most innocent thread is liable to get hijacked and turn in a very different direction, but I hope you'll be back soon and that the board culture will shift back to its more friendly and helpful attitude.

[ÆON]

  Rikki Tikki said:

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.

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

Yeah that's perfect and thanks.

[MallysMama]

I'm not sure I understand the "conspiracy theory" idea going on. How do you mean?? I took your saying that to mean you were sick of people bringing all their other health problems (blamed on celiac, of course) and trying to get everyone else to believe their symptom is being caused by that other problem. Does that make sense? Am I way off on the conspiracy? Maybe that's just something that bothers me. I get tired of reading posts where people think if they cough there must be something wrong or they have another food intolerance creeping up. (Okay, that was a pretty big exaggeration... sorry!)

I have to tell you about a lady that lives in my parent's neighborhood - that I suppose it the cause of my antagonism towards sickness crazed people. She kept thinking of all these problems she had...but wouldn't go see a REAL doctor (meaning someone who went through medical school and is board certified and state regulated). She ended up finding some crack-head psychiatrist guy who put all sorts of nonsense into her already confused head. She tried seriously every "cure" possible....no real medical cure by any means - just things like herbs and mental "therapy." I probably don't even need to tell you that she got worse. I'm sure she originally had Real symptoms that bothered her....but by the end of all these treatments she had a whole host of problems (most of which I'm sure were in her head). And of course she had to share with my mom every new treatment that was going to cure her....but never worked.

I agree with the pointless antagonism towards the medical profession! Has anyone stopped to realize that life expectancy is so much longer than it was 100 years ago? Thanks to technology and medical breakthroughs!! But of course, our human bodies are sooo complex that doctors will never completely understand them nor be able to "fix" all the problems. It's not their fault that they had never heard of Celiac before - have you ever studied all the diseases that there are? It's not possible for EVERY doctor to know about every health problem that can crop up at any time. It's not their fault "we" weren't diagnosed for a long time. However, you've got to give them some credit for Trying! They're doctor's not miracle workers. And I'd place my life in one of these REAL doctors any day (someone who IS board certified and state/federaly regulated). Not some crack-job who thinks herbs can cure the world.

*whew* Sorry - I just contributed to this thread that's going in circles and got way off track from Penguin's original post. (I'm probably one of the people that bugs her....cause I tend to get so opinionated and frustrated by "sick" people.) Hmm....I agree that this site changed since I first happened upon it a few months ago... and I'm convinced we all had something to do with that (me included).

[TinkerbellSwt]

Chelsea.. It took me forever to get thru this post. I am not sure if you will even read this. I want to let you know just like others have, that you will be missed on here. Your information and wit was very appreciated by me. You helped me so much with your information. I love the fact that you want to be a chef and would love to be kept updated on your progress with that.

I too wanted to go to school to be a chef before I got this diagnosis. I dont know if I could find a program by me that would work with me.

If you would, could you pm me to keep me up to date?

On the issue about this board going a bit haywire, I agree. I also am guilty of not making newbies feel welcome anymore. Its like my spirit isnt in it anymore. I wont give any information anymore, just incase someone else doesnt agree with me. I am afraid of the reprocussions.

I really would like you to stay Chelsea, but if you must go, I wish you the very best. Come back someday just to say hey!

[Green12]

Chelse,

I'm sorry to hear you are unhappy with the forum. I always enjoyed your sense of humor and hearing about what was going on in your life. I wish you well

[gfp]

  mouse said:

I love GFBETSY's idea. I hope the moderators run with this idea. It would be so great for the Newby's and great for us. We would answer the unusual ones. And I also think it is necessary that after those threads are created, that no one, except Scott, could post to them.

Well, it could be any mod.... but they should probably have some process before changing a post that everyone agrees on (IMHO) BUT also be able to add temporary ammendum's since products do change fast then the temporary ammendum can be incorprated into the text.

[aikiducky]

Another idea, I don't know how well it would "fit" this board... on other discussion forums that I read, moderators are much more strict with jumping into a thread that is getting off-topic, and asking people to please stay on topic. Of course that does mean more work for the mods...

Actually - to somewhat take back what I just said - thinking about the threads I read this morning it did mostly seem to be all on topic... just a lot of same old same old.

I think this board might just be getting older and more mature, and it might be time for some FAQ threads like suggested.

Or us oldies have to realize that at some point you just have read it all a thousand times, there's nothing really wrong with the board, it's us that have gotten more experienced is all. The group has grown, and we can't control all the information that is posted here...

Also - to come back to the topic of this thread - Chelsea, if you're still reading, I think you're making the right decision. I take vacations from the internet discussions I take part in from time to time. It's much better than hanging on when you're just fed up with it. I just hope you might be back sometime in the future to let us know how you're doing!

Pauliina

[jerseyangel]

  mouse said:

I love GFBETSY's idea. I hope the moderators run with this idea.

  gfp said:

Well, it could be any mod.... but they should probably have some process before changing a post that everyone agrees on (IMHO) BUT also be able to add temporary ammendum's since products do change fast then the temporary ammendum can be incorprated into the text.

Hi everybody--I think these are really good ideas, too! I sent a PM to Scott asking him about this very thing. I'm not sure what is involved in making such changes--that's why I started with contacting him, pointing him to this discussion, and just attempting to make him aware of what a lot of us are thinking. I haven't heard back, hopefully that's good news!

  aikiducky said:

Another idea, I don't know how well it would "fit" this board... on other discussion forums that I read, moderators are much more strict with jumping into a thread that is getting off-topic, and asking people to please stay on topic. Of course that does mean more work for the mods...

Paulina, this board seem to be a bit more "relaxed" than some--I have been known to step in on the rare occasions that I see a topic going downhill fast--but as far as conversations drifting off the original topic, I've not seen that addressed here. Personally, I like the different viewpoints that sometimes lead the discussions off-track. But, again, if that's something people would like to see addressed, we could ask about that too.

[Canadian Karen]

The only glitch I can see in regards to having a "sticky" thread for products/food that is okay to eat is the fact that it would be impossible to keep it totally up to date and the ramifications of someone getting glutened because of out of date information would be a major drawback. There would have to be a very bold disclaimer in the sticky absolving celiac.com of any misinformation in there...... Delphi has it but they also have people who are basically dedicated to keeping up those lists on a continuing basis based on current posts and updates by all their members......

Karen

[jerseyangel]

Hopefully, Scott is taking the time to consider all of the ramifications of this line of thought. I wanted to make him aware of everyone's thoughts, what he ultimately decides to do now is up to him.

[happygirl]

A lot of the suggestions are already on the corresponding celiac.com....maybe we could incorporate referring members with questions (after we answer them) to many of Scott's notes, lists, q/a's on his website. I have found some of my most useful information there and think it is a great resource that we sometimes don't tap into and direct newbies (and others) there..... No need to necessarily do a repeat of what is on Scott's board. I do understand that there are things that might not be covered there that are here, but it is just a thought!

[gfp]

  jerseyangel said:

Hi everybody--I think these are really good ideas, too! I sent a PM to Scott asking him about this very thing. I'm not sure what is involved in making such changes--that's why I started with contacting him, pointing him to this discussion, and just attempting to make him aware of what a lot of us are thinking. I haven't heard back, hopefully that's good news!

Its really simple, it just means creating a new category (like chat/gab) and setting permissions so only mods can write. If Scott has to do it all (i.e. its admin provs only) then its a lot of extra work for him I would assume....

  Quote

No need to necessarily do a repeat of what is on Scott's board. I do understand that there are things that might not be covered there that are here, but it is just a thought!

and

  Quote

The only glitch I can see in regards to having a "sticky" thread for products/food that is okay to eat is the fact that it would be impossible to keep it totally up to date and the ramifications of someone getting glutened because of out of date information would be a major drawback. There would have to be a very bold disclaimer in the sticky absolving celiac.com of any misinformation in there...... Delphi has it but they also have people who are basically dedicated to keeping up those lists on a continuing basis based on current posts and updates by all their members......

I think that's why having a thread where only mods can post is a good idea.... its more dynamic and as Vincent pointed out these things change.... however you can also just have two threads one a proposed changes and the other the "actual" ... and a mod can just copy/paste ammedums across?

I really think this is just a sign of maturity of the board and changing information available today vs 5 yrs ago but that doesn't mean we should ignore that...

I just found

  Quote

I cannot thank you enough for sharing your experiences. I would never have continued trying this for such a long time before; I expected results in just a couple of weeks and didn't realize all of the hidden traps of cross-contamination and questionable ingredients.

I think you all should know that there are probably others besides myself who lurk here once in a while, and you probably don't know how many people you have helped by sharing your experiences in a public forum like this. You've helped me more than any doctors ever did in my past, and I'm so happy to be gluten free and feeling perfectly normal and well now, besides carrying a wealth of knowledge to help me to know which ingredients or situtaions I need to avoid. I can't thank you enough. You are all doing a very nice thing by being here!

So obviously we are still helping and our experiences as well as just XX is gluten-free and YY is not are obviously helping

[jerseyangel]

  gfp said:

I really think this is just a sign of maturuity of the board and changing information available today vs 5 yrs ago but that doesn't mean we should ignore that...

Agreed

[VydorScope]

  gfp said:

So obviously we are still helping and our experiences as well as just XX is gluten-free and YY is not are obviously helping

That is along what I was trying to say. Hey, my degrees in Math/etc, not English!

[KaitiUSA]

I'm really late on this but I am sorry to hear that. I have not been around much anymore for some of the same reasons...in addition to being busy though but I still love the board and the people here:)

[oceangirl]

  KaitiUSA said:

I'm really late on this but I am sorry to hear that. I have not been around much anymore for some of the same reasons...in addition to being busy though but I still love the board and the people here:)

And why isn't there peace in the Middle East? I've never used the internet until I became sick because of gluten. Everything here has been useful- even, and maybe especially, controversy. As a professional actor for over 30 years, this is all fascinating. As a human being, thank you. Thank you all.

lisa

[Rikki Tikki]

Lisa: Your not going anywhere are you?

Kaiti:

I just thought that you were growing up and learning to fly and that is why you didn't post much anymore?

[gfp]

  KaitiUSA said:

I'm really late on this but I am sorry to hear that. I have not been around much anymore for some of the same reasons...in addition to being busy though but I still love the board and the people here:)

Kaiti .....

Really that's sad because it means the community looses your experience when really there is perhaps somethig that can be done?

We already had some ideas and I'm sure as a group we can think of others IF as a group we know what the problems are!

[oceangirl]

  gfp said:

Kaiti .....

Really that's sad because it means the community looses your experience when really there is perhaps somethig that can be done?

We already had some ideas and I'm sure as a group we can think of others IF as a group we know what the problems are!

Tavi,

No, no- thank you for asking. Too much useful info here and I still need that and want to offer what I can when I can. By the way, I like the way you think.

lisa

[VydorScope]

As a forum admin of an active board using this same software I have this adivce based on the above posts.

1) Update the existing FAQ, esply with reguards to orangization and clarity (I bet most of you did not even read it...)

2) Stop using pin'd for approved topics. It has no effect since most ppl just use "View New Messages". Assume all posts are aproved when posted, and reactivily delete the ones that are spam/etc. This is how most forums do it, and IMO it works much better.

3) Use a pined topic for the comon suttf in each section. Close the topic so that only moderators can reply to it. When question is asked that is answered in the pin'd thread, link to it and explain (nicely!) that alot of information is in that thread. This helps teach ppl to use it.

4) Do NOT increase the work Scott has to do, all this should be up to the moderator staff.

5) Do NOT moderat threads to keep them "on topic", that will stiffle the board and discussion in a very negative way.

6) Send a "newbie pack" out to all new registrations on teh board. I do this with my forum and I get very postive feed back. Its a about a 2 page letter that explians all the major parts of the site. I wrote a script that does it automagicly, and I would be hapy to share the script with Scott if he wants it.

Thats my opinion, and its worth exactly as much as you think it is.

[gfp]

  VydorScope said:

As a forum admin of an active board using this same software I have this adivce based on the above posts.

1) Update the existing FAQ, esply with reguards to orangization and clarity (I bet most of you did not even read it...)

2) Stop using pin'd for approved topics. It has no effect since most ppl just use "View New Messages". Assume all posts are aproved when posted, and reactivily delete the ones that are spam/etc. This is how most forums do it, and IMO it works much better.

3) Use a pined topic for the comon suttf in each section. Close the topic so that only moderators can reply to it. When question is asked that is answered in the pin'd thread, link to it and explain (nicely!) that alot of information is in that thread. This helps teach ppl to use it.

4) Do NOT increase the work Scott has to do, all this should be up to the moderator staff.

5) Do NOT moderat threads to keep them "on topic", that will stiffle the board and discussion in a very negative way.

6) Send a "newbie pack" out to all new registrations on teh board. I do this with my forum and I get very postive feed back. Its a about a 2 page letter that explians all the major parts of the site. I wrote a script that does it automagicly, and I would be hapy to share the script with Scott if he wants it.

Thats my opinion, and its worth exactly as much as you think it is.

Well I think #6 is outstanding! But my understanding is that #2 is non-negotiable and has been asked before... much as I agree with you that it works better.

The rest I agree 100%..... #6 I agree 200%

[darlindeb25]

I feel the need to add to this thread. I have felt this way about this forum for a long, long time. It had gotten nitpicky a long time ago and there were many times a newbie would come in and others would "kind of" pick on them, and I didn't like the feel here. When a newbie comes in and asks a question that may seem like a common sense question to a seasoned gluten-free person, that seasoned person needs remember what it's like to be told to go gluten-free and then not be given any info as to how to go about it. I was always available to others, always ready to help out. If there was a question I couldn't answer, then I would call my celiac sister who is also a dietician and get the answer. Together we helped many. I have a wonderful friend in Florida that calls me his celiac angel.

I post rarely here because of the feel so often. Kaiti is a wonderful friend of mine and anytime I have a question, no matter how busy she is, she gives me the best answer she possibly can and that's what it's all about. I find many times people feel they can blame everything on celiacs, they forget that people who aren't gluten intolerant also suffer other probs, which are not caused by celiacs. Yes, I have periphreal neuropathy and it more than likely was caused by my vitamin and mineral deficiencies, that the doctors agree on. I also have tinnitus, which has nothing to do with celiacs, also I have raynauds syndrome, which may or may not be as a result of celiacs. I was very sick for over 25 yrs and still face so many problems after being gluten-free for over 5 yrs. Yet, arguing is not what I need and often, it feels a little too heated in here.

There was a time when I was a moderator here and I think I did a good job. Scott got very upset with me over a newbie and we argued. I am sorry that Scott and I could not have been adults about the whole situation--yet at the time, I felt there was already too much "stuff" going on here that Scott was overlooking. Bad attitude people--so, I quit coming in as often. I wish I could say it has all changed, but most of the time I still feel the tension here and I personally do not need the added stress. Info I always need. And, I wanted to add, there are some very wonderful, very helpful people here.

I understand totally Penquin.

Deb

[VydorScope]

  gfp said:

Well I think #6 is outstanding! But my understanding is that #2 is non-negotiable and has been asked before... much as I agree with you that it works better.

The rest I agree 100%..... #6 I agree 200%

Yes, I know about #2, but I wanted to be as complete as possible.

[Rikki Tikki]

  oceangirl said:

Tavi,

No, no- thank you for asking. Too much useful info here and I still need that and want to offer what I can when I can. By the way, I like the way you think.

lisa

Thanks Lisa

  darlindeb25 said:

I feel the need to add to this thread. I have felt this way about this forum for a long, long time. It had gotten nitpicky a long time ago and there were many times a newbie would come in and others would "kind of" pick on them, and I didn't like the feel here. When a newbie comes in and asks a question that may seem like a common sense question to a seasoned gluten-free person, that seasoned person needs remember what it's like to be told to go gluten-free and then not be given any info as to how to go about it. I was always available to others, always ready to help out. If there was a question I couldn't answer, then I would call my celiac sister who is also a dietician and get the answer. Together we helped many. I have a wonderful friend in Florida that calls me his celiac angel.

I post rarely here because of the feel so often. Kaiti is a wonderful friend of mine and anytime I have a question, no matter how busy she is, she gives me the best answer she possibly can and that's what it's all about. I find many times people feel they can blame everything on celiacs, they forget that people who aren't gluten intolerant also suffer other probs, which are not caused by celiacs. Yes, I have periphreal neuropathy and it more than likely was caused by my vitamin and mineral deficiencies, that the doctors agree on. I also have tinnitus, which has nothing to do with celiacs, also I have raynauds syndrome, which may or may not be as a result of celiacs. I was very sick for over 25 yrs and still face so many problems after being gluten-free for over 5 yrs. Yet, arguing is not what I need and often, it feels a little too heated in here.

There was a time when I was a moderator here and I think I did a good job. Scott got very upset with me over a newbie and we argued. I am sorry that Scott and I could not have been adults about the whole situation--yet at the time, I felt there was already too much "stuff" going on here that Scott was overlooking. Bad attitude people--so, I quit coming in as often. I wish I could say it has all changed, but most of the time I still feel the tension here and I personally do not need the added stress. Info I always need. And, I wanted to add, there are some very wonderful, very helpful people here.

I understand totally Penquin.

Deb

That makes me sad Debbie. You were one of the first people I met here.

[rinne]

I think a diagnosis, self or other, can support a closed mind and that it is important to stay open to the possiblity that more is going on than we understand.

When I came to this board I presented all of my digestive problems and received support and confirmation that quite likely it was Celiac and so I proceeded down the gluten free path. It has been very helpful but I am still ill and it is not only Celiac. What concerns me is that I see people being supported to explore being a Celiac but not being encouraged to explore all the ways in which their bodies are breaking down, if in fact they are breaking down.

I feel part of the Lyme fooferaw which I suspect is some part of the "this board is ..." feeling although honestly, don't boards just change? And just as when I first understood about Celiac I was living in Celiac world now I am living in Lyme world, LOL and as an aside, IMO for all that Tailz was ala Steve Martin a "wild and crazy girl" she might just also be right about Lyme. I am on the diagnostic path with that, with a real doctor (who thinks I may have Celiac and Lyme) and may have more to say later but may also largely move on. I find it painful now to read the newbie threads and see myself and know it is inappropriate to scream "LYME" at them but at the same time I'm alarmed at how much confirmation they are getting in the Celiac diagnosis. I would like to see them encouraged to keep an open mind to what is going on with their bodies and to keep asking questions.