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#1 AVR1962

 
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Posted 30 January 2012 - 02:39 AM

So what is up with the critcal replies? Is anyone here a doctor or a specialist in gluten-free living? Aren't we here to help one another, to give advise on what worked for us? Relay info that we find informative and helpful?

We are a little different in our own needs and reasons for being here. Just because something doesn't work for one person doesn't mean it won't work for another. So I don't see the point of tearing down other people and the posts put on this forum.

If you don't agree then put your own advise on.
  • 1
Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

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#2 Lisa

 
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Posted 30 January 2012 - 08:05 AM

So what is up with the critcal replies? Is anyone here a doctor or a specialist in gluten-free living? Aren't we here to help one another, to give advise on what worked for us? Relay info that we find informative and helpful?

We are a little different in our own needs and reasons for being here. Just because something doesn't work for one person doesn't mean it won't work for another. So I don't see the point of tearing down other people and the posts put on this forum.

If you don't agree then put your own advise on.

We are indeed, a varied group. Which, many times makes for an interesting dialogue.

Just like many of our friends in "real life", our cyber peeps can have a passive approach and others have more of an acute point of view.

Not quite sure what I'm trying to say, but yes...many time more carefully chosen words would be more appropriate. B)
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#3 bartfull

 
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Posted 30 January 2012 - 11:11 AM

Maybe we should keep in mind that we are talking to people who are either sick, scared, confused, feeling helpless, or all of the above. We wouldn't be snarky to a person in real life who was feeling that way. We would treat them gently.

I guess because we can't see each other's faces and hear each other's voices while we type that sometimes we forget.

Or then again, maybe the criticle comments are coming from someone who is sick, scared, etc. Let's all cut each other some slack. We're all in the same leaky boat together.
  • 1

gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#4 Skylark

 
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Posted 30 January 2012 - 01:20 PM

To me, starting a catch-all thread like this hurts the tone of the board. I don't find global statements that are mostly untrue to be very constructive. This is one of the strongest and most cohesive Internet communities I've ever been involved in.

I think if you have issues with a particular post, the most constructive thing to do is to ask what the person meant in the thread. People here aren't usually deliberately mean but a lot of us are brain-fogged, anxious, depressed, grumpy, tired, irritable, or just plain sick. Sometimes a post doesn't come out quite as intended.

If you have consistent issues with a particular poster, this forum does have an ignore function you can access through your profile.
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#5 IrishHeart

 
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Posted 30 January 2012 - 04:06 PM

This is a rather "general" post to make, but I am guessing that something in particular has upset you that has prompted this topic.

For the most part, the people on this forum are generous and encouraging, but if someone has been overtly rude or otherwise has violated board rules, you can always alert a moderator via PM to the situation.

Otherwise, I have to agree that:

(1) people have been very ill or are still under the influence of gluten and may be irritable, out-of-sorts or confused. (I always give people the benefit of the doubt on that one-- having been there/done that :rolleyes: )

(2) sometimes what we think we have expressed so eloquently and politely is interpreted by a reader in another way.
Ask for clarification if you are not sure. I have found myself suddenly engulfed in a squabble, wondering why the poster is so darn mad at me and everyone else, only to have the poster apologize to us all because she was having a crap day and did not mean to be so gruff.

And finally, from reading many of your posts and conversing with you on here, I think it is safe to say you are a caring person and if you are like me, sometimes we can have hurt feelings over something someone says and take it personally. Don't, hon---most people do not mean anything personal by what they write and I have learned that it is best to just blow it off and chock it up to "personality quirks". :) And, some people are just abrupt in their writing style.

We are a diverse bunch and there are bound to be some misunderstandings. People have varying opinions. Sometimes you just have to "agree to disagree" and leave it be.
Best wishes,
IH
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#6 Korwyn

 
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Posted 30 January 2012 - 04:56 PM

I was a little taken aback by your post. While there have been some occasional heated discussions which the mods are pretty good about shutting down when they become entirely unproductive (sometimes heated discussions can be beneficial), I have found this forum to be one of the better, more rational open-subscription (anyone can join) forums I've seen in my 25+ years out in cyberspace. And one of the best at self-policing that I've ever seen.

In the last couple years here I've seen ups and downs in the tone of the posts and quality of information (occasionally contributing to the down side myself I'm sure :D ), and while we may (or may not) be in a down cycle I'm guessing there is more to your post than meets the eye. So...what's the scoop? What are you seeing that's bothering you?
  • 2
Undiagnosed for 20 years since first symptoms.
March 2009 - Negative Blood work
April 24, 2009 - Gluten-free
April 29, 2009 - Notably positive response to gluten-free Diet.
May 2, 2009 Dairy Free
May 6, 2009, Soy Free
May 27, 2009 Enterolab Results: Positive Anti-gliadin IgA, tTG IgA, Casein, HLA DQ2.2, HLA DQ8
June 4, 2009 Refined sugar free (except Raw Honey, pure Maple syrup)
June 29, 2009, Dad diagnosed Celiac by GI specialist via blood work and dietary response.
July 2009, Dad's gene test: double DQ8! Thanks Dad - I'll try to get you something nice for Christmas! :)
August 8, 2009 Really Soy free this time - Thanks Blue Diamond for the soy lecithin in the almond milk! :(

#7 IrishHeart

 
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Posted 31 January 2012 - 06:39 AM

Is anyone here a doctor or a specialist in gluten-free living? Aren't we here to help one another, to give advise on what worked for us? Relay info that we find informative and helpful?


An additional thought--- because this part of your post has been overlooked.

Offering advice based on experience is helpful, yes. And someone should qualify it as such--"this is MY opinion and it worked for ME kind of thing."

Offering information from various internet sites is a different issue altogether. <_<

A credible source may be helpful, yes. But some people post links to various wild theories, people claiming to be doctors who have a cure for celiac disease, :rolleyes: blah blah, blah... and often, these are unvalidated sources --and that is NOT helpful. (this is what we all discussed on Josh's recent thread.) And some blog to their heart's content out there in cyberspace and just because you have "ideas", it does make them facts. So, it is essential that we provide valid info, not someone's theory.

If a member posts articles or links to websites, he/she should be very sure of the authenticity of it--or else risk the inevitable GOOD question---"And where did you find this information?"
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#8 Aly1

 
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Posted 31 January 2012 - 06:25 PM

Hmmm, I am relatively new to the board but I have to say I kind of agree with AVR1962. Seems just recently there's been quite a lot of slightly biting posts. I've seen them and the negativity has bothered me but I generally prefer to avoid such things online so I stay out of it and don't reply. There are lots of reasons why people might...annoy...with their over-the-top anxieties or baseless claims (which are being offered from a genuine place of trying to help) but it seems to me that sometimes there are people who are all too ready to pounce with the claws out instead of in. There are gentle ways to tell someone they're wrong (and don't get me wrong, I've seen that in action too!) but just lately there's been some thinly veiled yuckiness on here. Which I only say because I have found this to be the singularly best forum I've been a part of with the most amazing people in it. It's a shame when people inject a yucky feel to their replies, of being superior or what have you.

I hope you can get the gist here of what I'm saying, I am having a hard time finding the right words. Yuckiness isn't quite right ;).
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#9 mushroom

 
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Posted 31 January 2012 - 06:30 PM

I think I get the gist of what you're saying, and we sometimes all do need to get a gentle reminder that, as Ellen says, we shouuld "be kind to one another" :)
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#10 Aly1

 
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Posted 31 January 2012 - 06:35 PM

One other point I forgot to make: The whole thing about backing every little thing up with official research. Research in the area of GI is really far behind what many of us on here already know. If we only followed published research, then those of us with NCGI would not have "existed" before 2009, and largely still don't if you look at the medical community at large. So while I always appreciate having research to back things up, for me I think there is a grayer area where people's personal experience is really valuable. If all I wanted was PubMed docs I could get that elsewhere. What I am here for is living breathing individual experiences that fill in the blanks where current research is lacking. Official research is icing for me, not a requirement...and if someone tells me that slipping b12 tabs into my bra each morning will give me a boost, I'll be sure to research it myself before proceeding! :)
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#11 Jestgar

 
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Posted 31 January 2012 - 06:41 PM

One other point I forgot to make: The whole thing about backing every little thing up with official research. Research in the area of GI is really far behind what many of us on here already know.

I think what we on the board try to do is get someone to cite their source. It's up to each individual person that's interested in the topic to go to the source and decide for his or herself if they feel it's valid enough to believe.
  • 0
"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#12 Skylark

 
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Posted 31 January 2012 - 06:56 PM

Personal experiences are very valuable but some people think their personal experiences should generalize to everyone. They can get pretty aggressive about it too. There is also a lot of misinformation out on the Internet. (Like the famous tea bag rumor.) Asking people to back up their facts and generalizations helps with those situations.

Also, remember that most people are not particularly comfortable finding stuff in the peer-reviewed literature. I get a lot of positive feedback about the PubMed links I dig up. :)
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#13 psawyer

 
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Posted 31 January 2012 - 06:59 PM

I think what we on the board try to do is get someone to cite their source. It's up to each individual person that's interested in the topic to go to the source and decide for his or herself if they feel it's valid enough to believe.

We all post things that are generally accepted without explicitly citing the source every time.

It is when someone makes a claim that is outside the generally accepted knowledge that we insist that you either provide a credible source, or note that it is your own opinion and not proven fact.

For example, some people have an intolerance to MSG. That includes SOME people with celiac disease. If you assert that NOBODY with celiac disease should consume MSG, well, you need to provide a credible source--MSG may or may not be good for you, but it is definitely gluten-free.
  • 0
Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#14 Lisa

 
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Posted 31 January 2012 - 06:59 PM

...and if someone tells me that slipping b12 tabs into my bra each morning will give me a boost, I'll be sure to research it myself before proceeding! :)

Smart Girl! :lol:
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#15 mushroom

 
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Posted 31 January 2012 - 07:08 PM

What I am here for is living breathing individual experiences that fill in the blanks where current research is lacking.


As Peter stated, it is perfectly okay to post experiences, opinion, speculation, so long as it is clearly stated as such, and not stated as facts. It is the assertion of facts which are not generally accepted which needs to be supported with credible citations.
  • 1
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator




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