Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Whats The Point Posting

gfp

Recommended Posts

gfp Enthusiast
gfp
Posted
  • Author
One new poster assualted me. Steve missed it, but it was after one of his posts that she got nasty. I called her on it, she got nastier. The WHOLE THING was deleted starting with Steve's post. One of my posts that should have been deleted wasn't, so you can still see it there and all it says is "deleted post". If that's the thread, Steve, that's what happened. I agree that your post didn't need to be deleted, but the rest did.

Probably but there should be some explanation....

I don't mind if they attacked me and the real thing is they really needed help....

The initial posts were not so understanding, I don't agree with the original poster (obviously) but the responses were a little antagonistic and really as my post pointed out we all have different ideas anyway.... wouldn't the world be boring if we didn't...

IMHO the initial posts should have been moderated ... no one special, just the overall tone ... and its not like the posts were actually wrong.. but they really didn't seem very compassionate to me and this person so obviously needed help not criticism...

They could possibly have been a spammer... they did mention one product by name... but I think as a group we failed them.. :( sorry... I felt like the responses were more of a club or clique reacting rather than the usual helpful posts ... I can see why but IMHO its no different from people who choose to eat "gluten-light" and brush off breadcrumbs or share a toaster etc. just a little more over the edge...

Its my opinion many people are conning themselves over shared kitchens and several other matters but that is thier opinion... I don't agree and I can be a little direct but try puitting yourself in their position... they think they found a cure they want to share and they just get very negative replies instead of being helped?

A similar thing happened over the lyme disease poster... but she was partially correct and apparently did get diagnosed earlier... and probably a few people here actually benefited from what she said?

So once again I think we failed as a group here.... and perhaps we can all learn from that...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • Replies 65
  • Created
  • Last Reply
CarlaB Enthusiast
CarlaB
Posted
Probably but there should be some explanation....

I don't mind if they attacked me and the real thing is they really needed help....

It may have been an oversight. I don't know why your post was removed and my last post wasn't. I don't know how the program works, but maybe when Scott went to delete the posts he was one number off and deleted yours instead of my last post.

It wasn't the original poster that caused the turmoil ... it was a new poster I haven't seen before or since ... she was less sensitive to the original poster and the rest of us for that matter than I've ever seen anyone be on this board.

I'd bet anything that removing your post was just a mistake.

Ironically enough, I never even considered Lyme when the "Lyme poster" was here. :blink: Now, that's a different story, as it's my understanding she got her three warnings and didn't change what she was saying. She thought everyone with celiac has Lyme .... I just think the symptoms are so similar because both are a systemic disease, that many people who have Lyme try the gluten-free diet thinking they have celiac and see little improvement on the diet because they have a totally different problem. The symptoms are a very close match. Then there are the really lucky people like me who have both! ;)

If you saw the argument, you would understand why those posts were deleted. The woman was not the original poster, and she was very insensitive towards her (and you, and me, and everyone else). I don't think the original poster even saw the thread when those messages were there it was so short-lived. Heck, Jestgar didn't even see them! :lol:

Jestgar Rising Star
Jestgar
Posted

Yeah! And I always look for arguments ;)

I also recall that the original poster also said he was raw/vegan so it seems VERY unlikely that he was consuming any gluten anyway.

CarlaB Enthusiast
CarlaB
Posted

No, different thread. This one had to do with family not being supportive. We ALL might be talking about different threads! :lol: The one with a deleted gfp post and several other deleted posts was about family being unsupportive.

Jestgar Rising Star
Jestgar
Posted
We ALL might be talking about different threads! :lol:

:lol: :lol: :lol:

Forum chaos!

blueeyedmanda Community Regular
blueeyedmanda
Posted

the one about the guy curing himself with the cleanse got deleted too

2kids4me Contributor
2kids4me
Posted
She thought everyone with celiac has Lyme .... I just think the symptoms are so similar because both are a systemic disease, that many people who have Lyme try the gluten-free diet thinking they have celiac and see little improvement on the diet because they have a totally different problem. The symptoms are a very close match

I agree, many of the systemic autoimmune conditions are known as "great imitators" in that they all have various vague symptoms - celiac with neurologic signs can mimic MS, Sjogrens and Systemic lupus are similar with their symptoms and can occur togther - making it a diagnostic challenge, Lyme disease is often missed and, yup, lucky people can be undiagnosed celiac when they contract Lyme, etc. ... and depression can accompany ALL of these diseases very commonly

I learn a lot from this board, its all about differing experiences, opinions and knowledge that we share...I think that somtimes the negative replies start happening when someone new comes on board claiming cures, or disagreeing with the long time gluten free ... or perhaps coming in with expectations that aren't met.

We all have to reply like we might meet the person some day, I want to be able to smile and say hello...not run for cover cause of something I said, or walk up to the other person and argue.

I learned long ago, that there is never only one or two ways to solve a problem, everyone's experiences are different and sometimes patients "dont read the book" - meaning they dont have the textbook symptoms OR there are 2 conditions occuring in that patient.

I like all the various threads we have going, but with moe than 12,000 people here, there is bound to be some grumbling.........

sandy

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


gfp Enthusiast
gfp
Posted
  • Author
No, different thread. This one had to do with family not being supportive. We ALL might be talking about different threads! :lol: The one with a deleted gfp post and several other deleted posts was about family being unsupportive.

we could be talkiung about 3 different threads (now Im dizzy) ...

but I guess that's worse????

I think what I'm trying to say is a lot of threads might get started by people we feel are niaeve ... but something is wrong when the whole board gets sucked in....

If one nasty person hijacked that thread then if we all acted properly (and I know non of us are perfect) then it shouldn't really have happened, they should have been moderated straight away and warned...

The problem is by the time Scott steps in the whole thing has snowballed.... so it ends up being a severe pruning because there are insults flying everywhere...

If we just had a moderator delete that one post and put a message it was deleted because it was deliberatly provoking/insulting or whatever then either the person should shut up OR they will keep posting and get banned if Scott thinks they deserve it..

IMHO what happens is people post back and then even mods post back but not as mods... I don't know what a mod can do (using the SW and permissions Scott has defined) but they should be able to delete that offending post before the whole thing gets out of hand...

Secondly poeple who know better and I know are nice people had responded badly to the original poster... IMHO ... and the original poster was the one who probably lost out... I doubt he/she meant to provoke the reaction they did... I think they were just misguided but either way people could have been a little more welcoming IMHO and been more gentle in thier corrections...

From the original post I think the poster did beleive they had cured themselves... and they may well have got rid of the gastro symptoms if they were borderline anyway... but now the poor person is probably damaging themselves without realising it.

If we could have encouraged them to stay and read other peoples experiences we could maybe... just maybe have stopped them being really ill later.. or even getting a terminal disease...

I learn a lot from this board, its all about differing experiences, opinions and knowledge that we share...I think that somtimes the negative replies start happening when someone new comes on board claiming cures, or disagreeing with the long time gluten free ... or perhaps coming in with expectations that aren't met.

We all have to reply like we might meet the person some day, I want to be able to smile and say hello...not run for cover cause of something I said, or walk up to the other person and argue.

Yes ... I wish I put it that way ....

AndreaB Contributor
AndreaB
Posted

As moderators, we can't delete posts or even make a single post invisible. We can only make a whole thread invisible.

Mtndog Collaborator
Mtndog
Posted

Now I'm all curious-= have stomach flu and I'm bored (and hopping mad since I had to cancel a father/daughter trip).

Steve- you're a good man.

CarlaB Enthusiast
CarlaB
Posted
(and I know non of us are perfect)

Speak for yourself. :rolleyes:

:lol::lol::lol::lol:

jerseyangel Proficient
jerseyangel
Posted

It kind of boils down to that Steve happened to post in 2 threads that either were completely deleted, or had certain posts deleated. There were others, also that this happened to. I also posted there, and went in and edited mine to better fit with the "new" thread.

As Andrea (and I, upthread) said, we as mods can't delete a single post. We can only render an entire thread invisable until Scott has a chance to look at it. If a member has a problem with a single post, they always have the option of reporting it.

It's a sort of "damned if you do, and damned if you don't" situation for the mods sometimes. (Sorry, but it is) I've stepped in and warned people for getting rude or inflammatory, and have been criticized for it (or completely ignored). On the other hand, if we let it go and just keep an eye on the situation, we get criticized for not saying something. Posting incorrect information is not against board rules--I'm not saying that incorrect info should not be corrected (and politely, at that), but where to draw the line about warning people is a lot of times subjective and up to the mod reading at that time, unless a board rule has been broken.

I've learned that you truly can't please all of the people all of the time. Some of the responses to that thread were a bit harsh (sarcastic, actually), but I could see where the people posting them were coming from. I can also see the point where maybe we should have given the guy the benefit of the doubt, and tried to set him straight.

Here's the thing--99% of the time these things work themselves out. That's why in most cases, Scott isn't aware that there is a problem until either someone reports it, or he sees that a warning has been issued.

Jestgar Rising Star
Jestgar
Posted

Patti, the moderators on this board are very gentle and I'm not sure a warning from one of them would be perceived as anything to be paid attention to. Maybe you could come up with a standardized sort of phrase: "The moderators have been asked to monitor this post for abusive behavior. Please stop XXXX, return to the original topic, refrain from mentioning XXXX...." Whatever fits the situation.

jerseyangel Proficient
jerseyangel
Posted
Patti, the moderators on this board are very gentle and I'm not sure a warning from one of them would be perceived as anything to be paid attention to. Maybe you could come up with a standardized sort of phrase: "The moderators have been asked to monitor this post for abusive behavior. Please stop XXXX, return to the original topic, refrain from mentioning XXXX...." Whatever fits the situation.

Jestgar,

That is a great suggestion. Would you mind if I showed it to Scott?

Are you saying I need to toughen up? :unsure::lol:

Mtndog Collaborator
Mtndog
Posted
Jestgar,

That is a great suggestion. Would you mind if I showed it to Scott?

Are you saying I need to toughen up? :unsure::lol:

I've been accused of the same thing! :P

Jestgar needs to put us through moderator boot camp!

Jestgar Rising Star
Jestgar
Posted
Would you mind if I showed it to Scott?

Are you saying I need to toughen up? :unsure::lol:

You are welcome to share anything I post.

I think if you were any tougher you'd be a linebacker. What you aren't is pushy. And I kinda like that combination :rolleyes: . Don't change. :)

jerseyangel Proficient
jerseyangel
Posted
I've been accused of the same thing! :P

Jestgar needs to put us through moderator boot camp!

:lol::lol: Bev :lol::lol:

Jestgar Rising Star
Jestgar
Posted
I've been accused of the same thing! :P

How could ANYONE think you aren't tough with that vicious looking wolf in your avatar!

Lisa Mentor
Lisa
Posted

Patti:

I think that you always to a wonder job. You are always to calm voice of reason. :)

We are a diverse group, which always makes it interesting. I can envision a three page debate on the color of the sky. But then, it's always "Carolina Blue" GO TARHEELS!!!

For the most part I think that everyone here conducts themselves in a respectful manner, with the exception of an occasional interloper. The Boards kindness and generosity far outweighs an occasional outburst.

Mtndog Collaborator
Mtndog
Posted
How could ANYONE think you aren't tough with that vicious looking wolf in your avatar!

Jestgar- Is this Better? Hit refresh.

Note: This avatar is only temporary. A cute puppy will return shortly.

blueeyedmanda Community Regular
blueeyedmanda
Posted
How could ANYONE think you aren't tough with that vicious looking wolf in your avatar!

Patti-is he a Maine Coon by some chance?

jerseyangel Proficient
jerseyangel
Posted
Patti-is he a Maine Coon by some chance?

Amanda--No, he's a "domestic longhair" :D I just love him to bits, though!

Bev--I was looking for Angus--where'd he go :unsure: ?

Don't mind me, I get confused easily :huh:

Jestgar Rising Star
Jestgar
Posted

Much better!

If you can make a little girl scream like that I'm really scared of you! :lol:

jerseyangel Proficient
jerseyangel
Posted
Much better!

If you can make a little girl scream like that I'm really scared of you! :lol:

Yea--come on Bev--give! What did you do??? :lol:

Mtndog Collaborator
Mtndog
Posted
Yea--come on Bev--give! What did you do??? :lol:

Told her to scream- it's my 3 year old niece Olivia and we have screaming contests (yeah- my sister LOVES that!). She has the highest pitch, most piercing scream I have EVER heard. When she was about a year and a half my dad and I took her to Ben and Jerry's and she got mad at her ice cream because it was too hard to eat so she let out this blood-curdling screech.

It was so bad that the guys behind the counter burst out laughing.

She also screamed through my wedding vows- we have pictures of my sister holding her with her hand over her mouth. She cracks me up!

I must say, you guys have cheered me up immensely today! :D:wub:

Angus will be back shortly. ;)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.