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I Understand That "tailz" Has Been Banned From This Site.


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#16 rinne

 
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Posted 14 September 2006 - 03:10 AM

Rinne, I tried to help, really. I sent her a very long, very compassionate PM. I gave her good reasons why it would be good if she would stop pushing her agenda so aggressively. I even gave her my e-mail address, in case she wanted some personal support.


I know Ursula, over and over again I have seen you being very compassionate but what happened with the banning doesn't feel compassionate at all.

Was the person who was abusive banned?

And as someone else said, "what if she is right?" What if the lack of a true diagnosis keeps some of us sick forever?

Okay, I think I have said enough, Tailz/Breezy if you are reading this you know where to find me. :)
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A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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#17 eKatherine

 
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Posted 14 September 2006 - 03:32 AM

I knew the two of them were both the same person when they both posted about being sensitive to "all pectins" within an hour. I was wondering if it was allowed for a person to have two membernames like that.
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#18 ArtGirl

 
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Posted 14 September 2006 - 04:29 AM

I for one appreciate the work the moderators do to keep this board somewhat sane - which given the diversity of personalities and quirks resulting from gluten and other toxins, is a huge job.

My initial impression of Tailz was that she was obsessed - which is above passionate - and was "pushing" her own agenda. I quickly got to the point where I would pass over her posts and go to another thread because there were just too many arguments resulting from her responses. (I never even thought to complain, just left the thread.)

Before Tailz began her crusade I was already well aware of Lyme's disease from having read other threads either on this subject or having been mentioned now and then. It is not necessary for anyone to bring this up constantly. The information and discussions are already there.

I normally don't get into this kind of discussion because I don't like conflict, but I just thought I'd put in another point of view. I leave you all to continue to discuss this but the bottom line is that Scott and the moderators do what they think is best to keep this board on track and weed out those that cause problems. Again, I appreciate the job they do.
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Valda
Enterolab results: ...two genes for gluten intolerance ...casein intolerance
other sensitivities: corn, eggs, soy, potato, tapioca
Hypoglycemic
Sensitivity to high EMFs [electromagnetic frequency] (limits my time in front of the computer)
Living a healthier, happier life.
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If I take the wings of the morning, and dwell in the uttermost parts of the sea, even there shall thy hand lead me, and thy right hand shall hold me.Psalm 139: 9,10

#19 jerseyangel

 
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Posted 14 September 2006 - 06:14 AM

Thank you for that, Valda :)

GFP is right--Scott is the only one who can ban a member--as moderators, we do our best to let him know about anything we think is questionable--and then it's up to him to take any action he sees fit.
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#20 CarlaB

 
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Posted 14 September 2006 - 06:25 AM

My initial impression of Tailz was that she was obsessed - which is above passionate - and was "pushing" her own agenda. I quickly got to the point where I would pass over her posts and go to another thread because there were just too many arguments resulting from her responses. (I never even thought to complain, just left the thread.)

I agree. I know she was hurting with not being sure what her illness is all about and that she needed help and support. However, that being said, if you go to her personal page on here, you will clearly see she considered it her "mission" to tell all celiacs that there's no such thing as a genetic disorder and that all celiac disease is caused by bacteria or fungus. It's on her page.

Many of us bring up other illnesses that can go along with celiac and it's really quite helpful, but it's not in a "I'm positive this is your problem" kind of way.

All that being said, it seems she was banned for breaking the rules by having two user names.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#21 gfp

 
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Posted 14 September 2006 - 06:47 AM

All that being said, it seems she was banned for breaking the rules by having two user names.


From what Ursula said she was banned for being requested to desist and then not desisting.

I think the 2nd user was an extension of this coupled perhaps with her confusion about not being able to log in.

#1 Do not be abusive or otherwise out of line towards other board members. Show respect for each board member, no matter what you think of their views. This is not a place to quarrel.
#2 Do not promote your own business, Web site or products.
#3 Do not spam the boards (i.e., post the same thing in multiple topics or areas of the board to bring more attention to your post).


I think its pretty obvious she was breaking #3 on a pretty regular basis.

The rest of it is pretty moot really? She was asked not to and wouldn't comply. Its Scotts board and the way he choses to operate it is like coming into his house.
Obviously we as members like to feel this is a "community board" but it obviously isn't; its an addition Scott has kindly added to his commercial website but it makes no pretence at democracy or fairness.

The mods presumably have a difficult job because there are only 3 rules and a lot of gray areas and the habit seems to try and keep everything which might be discussing policy as secret via pm's so its imnpossible to knopw what goes on!

Lots of boards work in different ways, there are community boards with volunteer mods and admins and written rules and constitutions that are voted on by the members and there are commerical ones where the mods and admins are all paid employees. This one comes somewhere inbetween.
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#22 Ursa Major

 
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Posted 14 September 2006 - 07:23 AM

The mods presumably have a difficult job because there are only 3 rules and a lot of gray areas and the habit seems to try and keep everything which might be discussing policy as secret via pm's so its imnpossible to knopw what goes on!


Now look, Steve, how would you like it if we'd discuss what you do and don't do, and what we don't like about you on the board? (not that we do, but let's just pretend) If you had posted some very controversial stuff, or are starting to harass people, or are constantly using swear words .......whatever..........and we weren't sure what to do about it. We would obviously first ask each other what the others think, and if we are still not sure what to do, we'll ask Scott. He still won't just do whatever he feels like, but sort of decides what to do, and check with at least one of us if we think that's a reasonable course of action. He doesn't 'just' do whatever he does out of the blue and arbitrarily. This is more of a democracy than you're aware of.

Do you seriously think that we should be doing all that out in the open, with ALL the members here being able to add their five cents worth? We'd have a madhouse, and people would get hurt left and right, and soon everybody would be leaving, and there would be no board left!

So, having said that, this is the last post I am making in this thread. Because, honestly, we have been discussing poor Carol (tailz) enough, likely embarassing her to death if she is reading this.
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I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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#23 Lymetoo

 
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Posted 14 September 2006 - 07:50 AM

I knew the two of them were both the same person when they both posted about being sensitive to "all pectins" within an hour. I was wondering if it was allowed for a person to have two membernames like that.

I think that shows she was confused and just changed names in order to get back on. If she were trying to hide her identity, she would have.

Anyway, I'm glad for the discussion. It explains a few things. I hadn't had time to go through the board and read all the threads with her name in them to figure out what happened.
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Negative biopsy for celiac 1980
Fibromyalgia 1980
IBS 1980
Interstitial Cystitis 1992
Systemic yeast
Diagnosed w/ Chronic Lyme Disease 2000
Diagnosed w/ Chronic babesia 2000
Tachycardia 2001
Asthma 2005
Have had Lyme and babesia for
about 48 yrs.

Began gluten-free July 19 '06
Native TEXAN living in Missouri

#24 Jestgar

 
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Posted 14 September 2006 - 08:02 AM

Well, I'm a very intolerant, non-compassionate person and I find a lot of people on this board annoying. But most of them provide facts or research to back up their opinions. So even if I don't like them, I feel compelled to respect them for what they are trying to do.

I've also noticed that people who continually push their opinion without anything to back them up, eventually disappear, presumably because they've realized that the people on this board are AMAZINGLY well educated about Celiac and related disorders.

I have to say I'm glad that Tailz won't be posting. Not because she was pushy, but because of one particular thread. A new person posted asking about Celiac. Tailz immediately jujmped in with her Lyme theory. So this poor person who was already confused and disoriented about her Celiac diagnosis suddenly also has to deal with having Lyme disease (which may or may not be the case, but Tailz says she does have it). It seemed way too overwhelming.

Suddenly not eating gluten made a minimal impact on my life, but shifting my reality because of it was huge. It takes time to sort out what's real and what's speculated and you don't need someone telling you that absolutely THIS is your problem, not Celiac.

I say Thank You to the moderators and to Scott for making this difficult decision.

Jeanna
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#25 Nancym

 
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Posted 14 September 2006 - 08:16 AM

I thought it was odd that two people recently joined the board with pretty much the same Lyme message. Now I understand.
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#26 jerseyangel

 
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Posted 14 September 2006 - 08:22 AM

Jeanna--

That's the thing--from the perspective of a newly diagnosed person, who has just been told by their doctor to "begin the gluten-free diet and see me in 6 months"--being told that their "real" problem is Lyme (or anything else, for that matter) is confusing at best.

I think this board has many, many people who are well-spoken, articulate, and well educated on gluten intolerance and Celiac. The in-depth discussions are very interesting to me, and I appreciate them.

I just think it's as important to be sensitive to those who are new to all of this.
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Patti


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"Bloom where you are planted"--Bev

#27 CarlaB

 
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Posted 14 September 2006 - 08:57 AM

Well, I'm a very intolerant, non-compassionate person and I find a lot of people on this board annoying.
Jeanna

:lol: :lol: :lol: Here's my laugh for the day!!!! :lol: :lol: :lol:

I love your honesty!
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#28 Rachel--24

 
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Posted 14 September 2006 - 09:34 AM

I'm pretty sure Tailz created another account because she believed she had already been banned due to not being able to log on. She pm'd me under the new name, told me she was tailz and then proceeded to explain to me why she believes I have Lymes Disease.

I'm all for learning about stuff but she was very pushy. I've actually been discussing Lyme on another thread because just this past Monday my doctor was suspecting it and he ordered the test....I'm now awaiting results. Tailz wasnt aware of this...she basically said (in her lengthy pm) that she could tell from my avatar and how thin I am...that I reminded her of herself when she was real sick and that I need to get tested before I get worse.

First off....I'm at normal weight in my avatar. Second, I'm a little scared right now as I await my test results and her pm did nothing but intensify that fear. I wondered how many people was she pm'ing with this kind of message?? I've been on the board awhile now but someone new could be really put off by something like that.

I dont agree that Lyme causes Celiac or that all Celiacs have Lyme....thats seems a little extreme to me. I do believe it can be a "trigger" just as any kind of infection or stress on the body can be a trigger for Celiac. So IMO yes, there may be some people here with undiagnosed Lyme....I could even be one of them.

She is obviously very passionate about this but I'm not sure that she was expressing herself appropriately on this board. She *was* being deceitful when she created a new account and continued on with her "agenda" and although I did not report her... I do support Scott in his decision.

Alot of us discuss different "theories" and other conditions which may or may not be linked to Celiac but to shove it down peoples throats in every post and on various threads....that seems a bit extreme.
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Rachel

#29 AndreaB

 
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Posted 14 September 2006 - 09:43 AM

Rachel,

Well said.

I even bookmarked a page of questions thay Breezy posted on a newbies thread. I don't believe I have lyme, although the thread she posted on, the person is an animal massage therapist or something like that. Sounded very interesting. She also has a horse and I commented on how I loved horses etc. Breezy jumped in with "we all have so much in common......lyme disease". That's a paraphrase btw.
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Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.


#30 tiredofdoctors!!!

 
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Posted 14 September 2006 - 10:03 AM

It did just dawn on me . . . . she had me scared out of my wits, as well! I looked at my husband the other night, and said "Have I been tested for Lyme disease?" He said, "Multiple times. Why?" I told him because this girl had written this post that scared me to death. . . . Had completely forgotten about that. And I've been diagnosed with Gluten Intolerance for a year and a half! I KNOW what's wrong with me.
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Lynne

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