Tired Of The Cheaters And Skeptics

[scoutfinch]

Thank you, Burdee and Deb.

It's important that people feel like they can use this forum as a sounding board, a place to question as well as to ask questions. I've seen several references about members (particularly newbies) who are "tearing down the diet" or somehow demeaning and mocking others who follow it. I haven't seen this at all. Nobody is doubting that the majority of the people on this board get very sick from ingesting gluten. Comments about the palatability of certain gluten-free foods does not in any way diminish the importance of the diet, nor does questioning whether the diet is really right for particular individuals. It's rough being new to the diet, and getting our heads around the disease and all the changes that go with it can be overwhelming. I think it's natural for the asymptomatic people to question their individual need for the diet in their quest to gather as much information as they can in order to make their own decisions on how they want to proceed. It's part of learning how to cope with it.

Maybe there should be a "newbie" section on this forum so that there is a guaranteed safe place for them to post and have their questions and concerns answered by people who don't mind answering the same things over and over.

scoutfinch

[jknnej]

Everyone just needs to calm down in my opinion.

Many times people with a dry sense of humor come off strangely to people who don't know them. On the internet it's 10 times worse b/c you aren't meeting the person face to face to get a feel for their character.

In that case, sometimes someone who knows they have such a sense of humor needs to be careful not to insult other strangers.

I've only been on the board for about 5 months, but I've never seen anyone jump all over someone with an innocent or naive question.

When I was brand new, ALL of my "newbie" questions were answered with sensitivity to my "newness" so my newbie experience was quite the contrary to what you described in your post.

In any case you can't prescribe feelings to people. Some people won't like others; it's just the way the world works. Every message board I've ever been on has drama b/c that's the way it is in the real world, too! Take a look at most of our jobs: I know at mine certain people are pointed out for attitude issues while others get along with just about everyone. It's the way life is. I'm sure mmm...gluten is highly used to differing responses to his unique personality by now....and judging by his responses to the critics, he is handling it quite well.

I don't feel sorry for him, or dislike him, either. I think you get what you give. If you're going to post things that are slightly off-color, you'd better expect some responses. The thing is, some of us sensed an inferred put down to Celiacs in his posts, whether he intended them or not (I'm guessing you would say not and maybe you're right). That is our right to feel that way, and it is our right to react when we read it. That's where you can't prescribe feelings to people comes in. It is what it is.

[KaitiUSA]

jknnej-Well put

There has been enough controversy regarding this...it's over and done with so everyone let's calm down and get back to what we are here for...to help each other, learn about peoples experiences, and build friendships

Remember, we all have different opinions and thats good...just think about how boring life would be if we all thought the same thing.

[darlindeb25]

I do not bait anyone--thank you--Deb

[jknnej]

If someone writes a post about cheating I have never seen a bad response. I've seen people trying to HELP that person and offer encouragement, which I think is wonderful and NECESSARY. We are, after all, here to support each other!

But a few of the new posters are NOT like the other newbies. They are, in some ways; learning about the disease, wondering how it works, etc. That is fine and dandy. But you can't deny there have been a few comments that were slighly questionable and that I personally found a little rude to some of us.

I have been fighting my entire LIFE for my family and friends to understand that I often don't feel well. They often blow it off like it's all in my head. Clearly I am sensitive to this issue. A regular newbie who is innocently asking questions doeesn't bother me at all; they are trying to learn! People in the community who ask questions don't bother me; most of them are trying to learn to oblige me.

But when people infer that's it's in our heads, I get really upset and I'm not going to apologize for it. It's the tone of the posts, the unstated in the posts that bothered me. Something about the word "psychosomatic" really rubbed me the wrong way.

If I'm reading it wrong, oh well. I've said it before and I will say it again: you can't force people to not get offended by others.

It's not the end of the world, either. Some people are just better off avoiding others, anyhow! There's certainly nothing wrong with that!

No matter my opinion on the posters, I still feel they have a right to post here and that is totally fine with me. After all, I don't have to respond to them, now do I?

I was just sharing my opinion along with Jessica that I agreed with her. I didn't even have any part in the posts; I read them all as an observer. But I did tend to agree with Jessica and I still do.

[jknnej]

Well, maybe I shouldn't take the bait, but here goes: what adults are you referring to that need to learn from teenagers? And if their behavior is questionable, then why would you engage in the same type of behavior? Do you realize that you are "baiting" us and continuing the argument rather than just ending it? I should just let it go but you know what? I find worse offense with that comment than with all of the comments about and from the newbies combined. It really speaks to how you truly feel about us inside.

I don't understand how people can accuse others of something but turn around and act the same exact way. It is very self-righteous.

If we are acting so honery why would you post about adults needing to learn from teenagers? No offense, I agree the teenagers here are AMAZING.

But I find offense with that comment, completely.

[burdee]

Hi Scoutfinch:

I like your idea of having a safe (doubting?) newbee section. Everybody who has celiac symptoms or celiac test result indications or even probable wheat intolerance should feel safe to express their opinions and feelings in whatever way they choose. Not everyone can tactfully or diplomatically verbalize their concerns or beliefs. Some people may come across as downright rude. I'm sorry that some people feel offended by that rudeness. There was one particular topic which I chose NOT to completely read, because I didn't like the tone or content of the topic originator's comments. However, I noticed that several people responsed favorably to and even were inspired by some of those posts. I REALLY appreciate the depth of emotions and wideness in variety of topics and sections (forums?) within this message board. I hope we can continue to allow everyone freedom to post about their celiac experiences, doubts and beliefs.

BURDEE

[pixiegirl]

When I was new to gluten-free I posted on a few different boards... I wanted as much info as I could get.... and fast! On some of those boards I got some curt answers to my questions.. I had one person tell me to do research before coming on the board so I'd know what I was talking about! Here I thought thats what I was doing by posting!! (I'm not on that board any more).

I may have insulted people with my questions but I didn't know any better... example: I questioned if I really had to throw away my shampoo with wheat in it and wow did I get blasted for that. I wasn't trying to "diss" anyone or cause trouble, I was just trying to figure this all out. In some cases I honestly felt like I wasn't welcome until I was as "Celiac savvy" as they were. Well, that takes time.

And if some "trolls" come on the board just to cause trouble, it doesn't take long to figure that out (almost all message boards have one or two of them) and who they are... either way, I won't argue with them but I'd still answer their questions as nicely as possible...

As I said once before people make stupid and/or bad decisions all the time and there is nothing we can do about it, so if someone does decide to cheat on their gluten-free diet... thats their business, I'm not sure why someone else should feel insulted. We all make our own decisions and we all have to live with what we decide.

Best to everyone...

Susan

[Guest gillian502]

I think it depends on one's background with this disease as to how seriously they take their diagnosis and diet. I also agree with Jessica that many people need to be a little more careful of the tone of their posts...ask anything you want, just be sensitive to the fact that this is a board for people who have a life threatening illness, plain and simple. I almost lost my life at the age of 29. Hey, it happens, people do sick with Celiac and die. Not something we want to think about, but it happens. I think that's why the people who may not understand the illness just yet need to take into consideration that some of us have been through hell, and as great of a sense of humor as we may have about other things in our lives, we're just not ready to laugh about this yet. Not yet.

I also wish this wasn't called a "diet" in the medical community, but rather something more accurate such as a "prescription", because that's what it is, a medical prescription. Some people take their meds and others choose to forego treatment, their choice of course.

Overall, I think we need to be a little more aware of each other's feelings...this is a board for a serious disease, and we need to be respectful of everyone's experiences with the disease. Anyone who doesn't think it's a serious disease, please don't tell us that. It truly is hurtful. Thanks,

Gillian

[darlindeb25]

Gillian--I dont call it a diet--I call it a lifestyle--i never say diet--I may say I have to stick to a special type of diet, but I dont want people to think this is a weight loss skeem-------as for the newbies, some of them dont know that some of us were so sick--some find out by accident that they are celiacs and they dont know real pain as of yet and with luck, they wont--Deb

[mommida]

The mmm...gluten "incident" happened because it needed to happen. Newbies have got to go through having their complete lifestyle changed. Symptomatic or not. Positive for life. You can never just pop a snack in your face without checking for ingredients.

Some people are going to handle it differently. It was out of control, but the controversy made me realise some of the feelings I have for others. How much I respect and care for the people here. How a person has to live this experience to understand what it is really like. I can understand someone feeling angry about this, and I can forgive them for lashing out.

Peace!

Laura

If you haven't guessed by now I have a very dry sense of humor. (Blame it on Monty Python.)

[Guest gillian502]

True, a lifestyle is exactly right.

[Canadian Karen]

I like to call it a treatment. The treatment for Celiac Disease is a gluten-free diet......

By just calling it a diet, it seems to invoke thoughts of "it's a fad thing", I think...

Karen

[kvogt]

This thread is rather warm, isn't it.

Just a few comments...

For any given post, under the poster's name you will find a rating like Newbie, Member, Advanced Member, etc. This rating is assigned by the QUANTITY of posts, not the QUALITY of posts. Any posting should be judged on its content. I've seen some very astute posts by Newbies and some pretty ignorant posts by Advanced Members and everything in between.

Some folks post like they're paid by the word.

Some folks admit their ignornance and post anyway wasting the reader's time. There is a time to listen.

Some have highjacked a thread with their concern when they should have started a new thread.

Some folks are in a volitile emotional state with their family, friends, work, spiritual life, etc. and react, sometimes vehemently, to what is most likely innocence or ingnorance. There is some paranoia on this board.

This board is very feminine. As a man, I sometimes feel I'm in a room full of women. I've been tempted to start a Men Only thread. Men emote differently than women.

I'm afraid I've sounded critical. In fact, I'm not. In general, this board is healthy. Over the past 2-1/2 years I've seen a lot of people get the help they need. I've seen Newbies mature and become helpers, which is as it should be.

Peace

[jknnej]

That was a nice post, kvogt. I don't think you came off sounding critical. Sometimes it is better to get a differing perspective and what you have shown me is that all of this pettiness is pointless. We are all here to help others. Thank you for that:)

[bklyn]

Just my 2 cents worth - I've been following this thread and I'm glad to see that everyone is settling down and coming together. Since I was a newbie not that long ago, I relate to the person who found it hard to believe some of the "rules" of celiac disease. This is definitely a learning process and every day I get new info I use for my new "lifestyle." I'm just glad I have a place to "run" to when I get teary eyed and I'm feeling bad (a lot). It's great to know there are others who understand. Just think about how isolated someone was who was diagnosed before the internet!

[Canadian Karen]

That was a good post, kvogt. It reminded me of stef the kicking cuty's posts about that book "Men are from Mars, Women are from Venus" (or something along those lines!!!) Men and women do voice their opinions in very different manners and what is good about this board is the fact that we, both men and women, have a common goal of getting healthy and we can be on the same wavelength no matter what "species" we are!!!

Karen

[Guest gillian502]

I personally don't see a real difference in how I would react to this disease and its treatment than a guy...but if some others do, that's cool. I'd be offended to be "shut out" if a thread was started for men only. In fact, that'd be the last time I'd visit here. Just my 2 cents.

Gillian

[Guest ~wAvE WeT sAnD~]

This is slightly off topic---but it relates to skepticism, sort of.

Something that bothers me, and this is coming from people that I contact in person, not anyone on the board.

It bothers me that people tell me that they know someone with celiac disease, but that particular celiac disease patients symptoms aren't as "severe as mine" and that they can "tolerate" more gluten. Of course, these people don't freaking realize that no matter what, whether a person is asymptomatic or not, THE INTESTINAL LINING IS BEING DAMAGED.

Grrrr. I wish that concept were more widely understood.

[Canadian Karen]

Based on living with my husband for 13 years and dating for 4 years before that, I have to say that I can certainly see how he and I would treat/react to this diet VERY differently. Whereas I like to learn, learn, learn (knowledge is power!! ), my husband would learn the bare minimum to "get by". Where I find it soothing to talk to people going through the same thing, he DEFINITELY wouldn't. Where I am very open and friendly, he is very private and reserved. Getting him to talk about his feeling is like pulling his eye teeth! It took over 1 1/2 years of dating before he even said the words "I love you" to me!!! He thinks he shows it by his actions, therefore does not need to tell me (yep, he's definitely from Mars!!!)

I guess the point I am trying to make is women are much more touchy/feely/talky about issues where men prefer to be somewhat "nonchalant" or "get to the point then drop it". I guess you can compare it to shopping. Women LOVE to window shop, go into numerous shops, etc. whereas men prefer to "go in, get it, get the hell out of there as quickly as possible".......

Sorry if I sound like I am rambling. My neck and shoulder pain/electrical shock/locking thingamajiggy kept me up until 4:30 a.m. and I had to get up at 6:30 a.m. so I am on auto-pilot right now.......

Karen

[Guest BERNESES]

Having been on the board for just a few months, I have to say that when I came as a newbie, I found people to be very respectful and compassionate to me and I never found that anyone "berated" my newbie questions.

I think the most important thing is respect and compassion for all. A newbie's question shouldn't be answered rudely if it is a genuine question and a quest for new knowledge even if it's been aswered a million times on this board already.

What I do have a problem with though is if someone comes in with an "attitude"- you can be doubtful, you can cheat, you can be skeptical, but if you don't have anything good to say, then don't say anything at all. It's one thing to express surprise, horror or shock and even disbelief, but do it without an "attitude".

I have found this board amazingly compassionate and I want it to stay that way. That's mt two cents. Beverly

[ianm]

Some folks are in a volitile emotional state with their family, friends, work, spiritual life, etc. and react, sometimes vehemently, to what is most likely innocence or ingnorance. There is some paranoia on this board.

This board is very feminine. As a man, I sometimes feel I'm in a room full of women. I've been tempted to start a Men Only thread. Men emote differently than women.

I think these two paragraphs sum it up nicely. If this board was mostly men I don't think mmm..gluten would have caused much of a stir.This is not a criticism but I have found that women tend not to understand dry, dark humor like mmm..gluten's and end up getting offended by it. The men on this board reacted very differently to his remarks. Some of what mmm..gluten posted pushed the boundaries a bit but he was trying to make light of a bad situation and some of us took it the wrong way. Men frequently engage in dry, dark humor and poke fun at each other but not in a hostile way. Women don't do this with each other. When they do it is with malicious intent. When they see and hear men do this they frequently take it the wrong way. I really have not seen many hostile postings on this board, conmpared to some other message boards out there, and find overall that this is a great place to be. We all need to think just a few seconds more before we hit the Reply button sometimes.

[Guest BERNESES]

I respectfully have to disagree. I can be as sarcastic and dry as they come without the malicious intent (my husbnand always says I'm more like a guy than most women ) and I realize that after awhile mmm...gluten was trying to be funny, but people have to remeber that we don't know each other. When we post we can't read each other's facial expression or raise an eyebrow to show that we are being sarcastic (emoticons help but it's still not the same). You have to choose your words carefully online (not you personally- the general "you").

But I agree with you too- this board is one of the best I have ever been on and I think that 99% of the people on it are genuine, concerned and compassionate.

[gf4life]

I agree Laura,

In "real life" I have a very dry sarcastic sense of humor and mmm..gluten had me rolling on the floor with his comments. I tend to leave my sense of humor at home when I'm posting, since I have had problems in the past with family and friends misunderstanding e-mails. I don't want to offend anyone, so I check it at the door so to speak when I am online (unless I am sending an e-mail or PM to someone I know understands that I am joking).

I honestly feel bad for mmm..gluten. He was joking (which is an extremely healthy way of dealing with a medical diagnosis) and people took it as a personal attack on our gluten-free way of life. I didn't see what all the fuss was about. People should have given him a bit of understanding, instead of chasing him away. We are here to support each other not condemn anyone for their personality...

God bless,

Mariann

[Guest nini]

I have to add that I saw the humor in his responses as well. My family and co workers don't "get me" most of the time as I tend to have a very dry sense of humor. It's too bad things had to get so "complicated" here. This has been a really good safe place to learn and get support.