Tired Of The Cheaters And Skeptics

[burdee]

I've enjoyed the humorous posts in this topic but wanted to ask a question: AGAINST WHOM OR WHAT DO 'CHEATERS' BELIEVE THEY ARE CHEATING?

THEIR DOCTORS? Some of us had to work REALLY hard to teach our docs about celiac and/or convince them that celiac is a real disease. I really doubt most of those docs care whether we 'cheat'.

THE GLUTEN RESTRICTIONS? That's kinda like reading a label that warns of poisonous ingredients and then ignoring that information while consuming the substance. However, with soooo many silly 'weight loss diet rules' which can be created by anyone who wants to write a diet book and 'nutritional guidelines' which change from month to month and research study to study, people may believe they are 'cheating' anytime they eat any food. There's so much conflicting 'diet' info that gluten restrictions may seem like more silly diet rules.

THEMSELVES? That's the only logical answer I could come up with. We are responsible for our own bodies. Only we can process information about what helps or harms our bodies and make logical decisions about whether to use or ignore that information. I mentioned in the topic with the cheating poll that those of us who suffered major pain from our celiac symptoms are more motivated to avoid foods which cause us pain. However, our overweight population (67% of us) choose to ignore pain from arthritis, heart problems, type 2 diabetes and other overweight related conditions. Likewise celiacs who don't suffer painful cramps, bloating and constipation/diarrhea discomfort can consciously choose to ignore discomfort from Rheumatoid arthritis, type 1 diabetes, lupus, MS and a whole host of other celiac related conditions ... maybe not today, but eventually.

However, ignoring important self-care info is the popular thing to do. Self-care is almost a joke within our society. Risking our health with abusive habits like smoking, excessive drinking, abusing drugs, overeating, reckless driving and even excessive restrictive diet and exercise is accepted as the norm. No wonder celiacs with no apparent symptoms have difficulty restricting themselves to take care of their health. Self-care is not popular. Our society values the work ethic ... push your bodies hard, use any habit or substance you need to work, produce, make money. Finally when your body wears out from all that self abuse, take it to a doctor to repair. Let somebody else take responsibility for repairing the bodies we abused over the years. We had more important things to do than to worry about taking care of our bodies.

BURDEE

[MySuicidalTurtle]

People all around do things everyday that are bad for them (just look at Burdee's list of risk behaviors)! This place is a board for Celiacs- those who do and do not follow the diet.

We all suffer from the same disease and deal with it how we want.

Cheaters know they are hurting themselves and we who do not cheat have to deal with them making their own decisions and either be supportive or leave them alone. You can't make people do things.

Those who do cheat need to be understanding that we only care about them.

This board is a place to talk about everything and is not a place ness and teasing.

Also, please remember to try and stick on topic and Celiac Disease related.

[lotusgem]

Who knew, how literally DANGEROUS "Dangerous Grains" could be???!!!

No, seriously, this is a support group for people with Celiac. There is an infinite number of personalities and the responses will be different because each of us is so different. If someone cheats, he suffers whether or not he is able to recognize that. Maybe he will never get a clue, but as long as he comes to the group, he is aware of his condition and perhaps this could be a place with a positive influence. Because really, he is not the only one who suffers, but anybody that loves him will suffer as well if his life is cut short from the effects of this disease, if untreated. I think that we can manage to be inclusive and provide support for all who visit this message board.

Paula

[Carriefaith]

THEIR DOCTORS? Some of us had to work REALLY hard to teach our docs about celiac and/or convince them that celiac is a real disease. I really doubt most of those docs care whether we 'cheat'.

That is a really good point burdee. I've heard stories that some doctors will tell their patients that it is ok to cheat. Also, some doctors are so horrible at explaining the diet that some people leave the doctor's office completley clueless, thinking that they can cheat or don't have to be careful.

[jenvan]

However, ignoring important self-care info is the popular thing to do.

I have to agree with burdee and the point about self-care not always being popular. A lot of people don't truly want the best for themselves and others.

...but as I've said before.... All I have to do is think about intestinal lymphoma and carrying around one of those colon bags and I'm on track !

[angel-jd1]

Attacking people with a "follow the diet or die and don't question anything" attitude is neither helpful nor supportive.

I'm not attacking anyone. I'm just stating my feelings twards some of the recent topics here on the board and how they make me feel. And by the way it sort of is ironic that you said follow the diet or die, well that sort of how it works. Slow death with cancer and such, just ironic you picked those words.

I was just wanting to see if anyone else felt the same was as I, and it seems that they do I have gotten several PM's reguarding the subject and many feel that it's crazy that people are purposely cheating and such.

Thanks for listening.

-Jessica

[celiac3270]

I have mixed feelings on this.

On one hand, those who are coming here who cheat have a right to, and perhaps don't yet know about the repurcussions. If they come here, they might be taught enough to influence their way of thinking.

On the other, I can see your point, that it may become frustrating answering the same question and listing the same related disorders over and over again.

My point is that I see your point, but maybe it's just hard for these people to change, even though they want to. After all, if they really didn't care, they would probably just go on with their lives and not post at all.

[tarnalberry]

You assume that people who are purposefully cheating do so in the same context as that of your life, and that's often not the case. Seriously, if you felt no different if you ate wheat or didn't, it will never appear to be as real a threat, certainly not at first.

People need a place to learn - a non-judgemental place to learn - and this can be a good one, most of the time.

(Quite honestly, this is how I feel about smokers, but smokers DO affect me - it's an asthma trigger for me, even if the person smoked outside and came back in - and celiac cheaters don't.)

[Guest gfinnebraska]

I would, personally, be lost without this board. I have never THOUGHT about cheating... it has never been an option because I am one of those who suffer WAY too much to even LOOK at a pretzel... let alone put it in my mouth.

Having said that... I think we need to be open to answering the same question over and over. I would hate to look back to MY first question/post. I am sure I asked the SAME thing 2000 people before me asked. I love "lovegrov"'s posts... he doesn't go into a lot of detail... just states the answer... plain and simple! That is all the people want ~ answers!! Hopefully after reading posts for a few days/weeks/months they will realize the choice they need to make and follow a gluten-free lifestyle. THEN we can add one more to the "right" side!!!

BUT, also, everyone needs to have the freedom for the occassional vent ~ right Jessica??!!

[pixiegirl]

I would never cheat either, I just get too darn sick but I have glutened myself accidently a few times, its no fun!

I was new to this board sometime back last fall and I asked all the typical questions but so many answered me so nicely that I felt comfortable here. In truth when I first went gluten-free I thought that maybe once a year, I would break down and have a Sweet Tomatoes pizza.... well I've never done that nor would I consider it mostly because the kind people here have educated me so well and so patiently.

As far as the people who know the score and still cheat, we each have to make our own decisions in life... you know, people choose all the time to do the wrong thing... to do drugs, to drink too much, to eat to much, they don't exercise... I'm sorry they make those decisions but I can't change them. All I really can control is my feelings.... I don't like what they do but I'm not going to get in a twist about it. I make a conscious effort to lead a calm, stress free life.

As far as you needing to vent? This is a good place to do it, we are all in the same boat and I'm sure a lot of us understand your frustration.

Best, Susan

[Emme999]

Hello

Hey, I'm sorry that I went off topic earlier but I did it for a reason. Too many people were getting hurt/upset/angry - and that's not good for *any* of us. I think that we need to try and lighten up every once in a while. There is enough pain in this forum already.

I love you guys and absolutely agree that it can be irritating and hurtful when someone comes on and tries to tear down our only "cure" (the gluten-free diet). It's our hope, and I don't think that anyone should try to take that from us.

But - it is probably more true that most people who argue with the diet are simply uninformed or have not experienced the healing effects of the diet (especially with regard to having been on it long enough) - rather than their *trying* to hurt us.

I'm still new to this and it is incredibly hard to deal with the outside world arguing with what I've learned from "real live Celiacs" and actual medical proof. Too many people just don't know. I come to this forum for understanding, friendship, and guidance. I honor and respect all of you. I think it's fair to expect that from others - but I also think that we need to try and laugh off some of the foolish words that others might say without thinking.

We need to keep this a "happy place"

- Michelle

[celiac3270]

I agree, Michelle

[gf4life]

One of my closest friends and I met volunteering at a local elementary school and found that she and hr daughter were also gluten intolerant, and our friendship formed out of that. She had her daughter back on gluten for testing and at that time her daughter was always sick and missing a lot of school. She was always on gluten because she refused to admit that she had it as well. Almost 2 years later her daughter is STILL sick often because she allows her daughter (who will be 10 this month) to cheat. Partially because she cheats all the time. Her daughter doesn't learn how to follow the diet very well because sometimes she will have gluten and other times she isn't allowed to...it is inconsistent, and so she stays sick.

I am certainly not going to freak out at them for it, but I do gently remind them when both of them are in the bathroom all the time that they would be better off being 100% gluten-free. My friend is starting to realise and has gotten all the gluten out of her house and is trying to stay gluten-free herself as well. But just the other day she was eating some strawberries off of a cake. She figured it was okay, as long as she doesn't eat the cake...She still hasn't fully learned the concept of cross-contamination, but she is getting there. We all just need to be patient and try to understand that for some people it takes a bit longer to learn how to handle this new way of life

And if you get tired of answering the same questions over and over, just don't reply to those same questions. There are plenty of others here to answer those!

God bless,

Mariann

[stef-the-kicking-cuty]

Yeah, I had the same problem with the asian woman and her daughter, who can't have wheat. She gave her daughter all kinds of wheat all the time and then she was wondering, why the kid was whiney. I stopped the contact to them, because it just killed me to see her suffer and the mother didn't listen at all.

[Guest BellyTimber]

In this thread I best enjoyed the posts by Burdee, Scoutfinch and Tiffany.

I greatly enjoy and appreciate the spread of views I get here.

I remember with gratitude my first days posting here when I was extremely angry at the disconnect between what the doctor, a good book I read by Karen Brody, some of yourselves, and our national support group were saying. You were all terrifically good with me and patiently helped me through some of the many, many issues.

Let me add to this list of circumstances:

- people whose doctors are confused or ignorant

- people whose support groups are confused or ignorant

We are all such different personalities, for some types of people confusion needs a heck of a lot of working through when it's catching.

A friend of mine gave a lecture (with a sense of humour) on Thursday describing people as each having their own "fruit salad" and then again as having the "burger with" or without the various extras in life. As "cat people" and "dog people" and "having fleas" (issues). I'm a cat person by the way. With a veritable macedoine plus plenty of fleas. I also seem to fit almost every personality profile that occupies space in text books.

We don't see each other, we don't know why each chooses the words to post or what part of the reality they reflect, what the words mean.

I'm glad of the expression "infringement" that occurs in a book by a young person I know and refers to him and his younger brothers trying to keep to their new diet.

I also like (a little less) the word "non-compliance" which I heard in a conference. That was put down to when doctors don't give the patients proper information and especially don't tell them about a support group.

In the UK there is a practice of not expecting people to join a support group until after diagnosis which clearly deprives them of sources of information to guide them through proper diagnosis as well as the chance to do homework about the diet.

I explored many of the foods I now rely on, simply for variety, years ago, what shops they were to be got from etc.

I'm a slow learner and I accept that about myself.

My doctor is not going to diagnose me with celiac disease but with Gluten Sensitivity. No way can the gluten challenge be done to me. This has been decided and you remember when I was agonising - agonising over that. I'm now at peace - uneasy peace.

If a doctor is going "I can't" for a couple of years and he didn't even know he should send one for a biopsy at the right time, and if no-one else is speaking to me about any of this at all, no wonder I get confused (also in the light of my nervous constitution).

There is to me an alarming tendency of some of your doctors to want you to go on a gluten challenge after being gluten-free a long time, I want you to have the same solution as I now have (in the last couple of weeks) but I'd better not interfere, I'd better just say what worked for me (so far).

What worked for each person is widely different, there are some who are self-diagnosed and aren't going to see a doctor, some who are only off wheat, some who are off a very big list of things, etc. Quite a lot who are still ill after a long time which is sad but it's good to know (paradoxically).

If we all helped each other a little bit, no matter what mood we were in, that's good. If that's venting that's good too. If that's being sceptical that's good but expect people to come back and help like they did me.

We're thousands of miles from each other, it's slightly safer than within arm's reach - like we all keep saying there are people we just have to avoid.

There are very deep and relevant questions about what is a doctor - in the US and in the UK where it is a different animal effectively ...

I thank God you're all here, bless you all ...

I have pinned to the shelf above the computer the following quote - quoting myself, the words came straight out of me about two months ago:

ANGER AND DENIAL

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

I don't believe it

I don't want to treat it

I don't want to control it

I hate it!

Already the last three lines have changed, I force myself to cook every day and freeze/thaw raw or cooked foods and have begun to love myself for doing that, but believe ... I still think I'm going to blink and get back to normality ...

On my kitchen shelf are tapioca pearls the normal size, and ones about ten times the size (thought of them when you were all on about stoning someone !) Do I just cook them for longer or what? Am working up to treating myself with a nice tapioca milk pudding (sorry you non-milk eaters).

[Guest BellyTimber]

Words don't always have one generally accepted meaning, and that's probably accelerating today (semiologists would enjoy discussing that).

I want to say "infringement" and to a lesser extent "non-compliance" are more matter of fact, neutral words than "cheat" ...

The vast majority of people don't examine themselves to find out how they tick ... The time I spend doing just that, I could spend doing something of equal value ...

[jams]

I just wanted to see if I can put some light on this subject.

I was diagnosed 12/03 with a positive biopsy followed up with a positive blood test. I thought I had a great doctor that checked me for celiac disease with only going on that I had reflux. Since reading this board over a month or two, I now realize I didn't have a great doctor. He told me to stay away from wheat, rye, and barley. Never did he tell me or refer me anywhere that would list all of the "hidden" gluten. I thought I was doing a great job by not eating bread and pastas.

Since I have come to read this board, I have eliminated all gluten. Since doing so, I now do have immediate responses to being glutened. I was completely unaware of the hidden gluten. I had said on more then one occasion that I wished I would get sick immediatly after eating gluten so I knew when I was eating it.

When I first read some of the posts here, I thought it was all a little extreme. I gave it time and tried it. I did more research to find out it wasn't all that extreme after all. I have never been one that could diet. I have NO will power. I have since been able to stay gluten free because I feel crappy after eating it. It takes time for everyone to absorb these changes they need to make. It also takes time for them to learn ALL of the changes they need to make. I have some of the best resorces available to me. I was completely and totally unaware of them. I didn't know how serious celiac disease is. The only reason I found it is because I was bored one day and did some research on my own. The dr did not make it out to be a big deal at all.

I appreciate reading everyone's posts. I enjoy to read about when people are glutened and different responses to that. I am learning. It makes me feel good to know that I am not the only one with questions and complaints about this diet. It is hard to talk to my family and friends about it because they are not educated nor do they really want to be. I have accepted the fact that I have celiac disease and I need to stick to the diet. Don't get me wrong, I am not happy that I cannot drink a Miller Lite at Summerfest or grab a Krispy Kreme with my kids. I dont' care how long I have been or will be gluten-free, I will never be happy about that!!

[Guest nini]

I will never ever be happy about not ever being able to have a Krispy Kreme donut ever again.

I truly wish there was a gluten-free version of a Krispy Kreme that was just as yummy. Kinnikinick donuts are ok, but they are heavy. Not light and melt in your mouth like Krispy Kreme's

[frenchiemama]

You're killin' me with this krispykreme talk.

[jknnej]

Some people seem to be missing Jessica's point. It is not about cheating or not cheating, it is about RESPECT. Some of these newbies are coming to our board and intentionally or unintentionally disrespecting and mocking our way of life/problems.

I could care less if they cheat. I don't have to live in their body. To each his own. But don't come trolling around our board laughing about serious matters. If you're SINCERE with a question, fine. But the attitude of some of the new posters is very condescending, like this is all a great joke and we poor pathetic people who actually follow this awful diet and have all of these "psychosomatic" symptoms. That ticks me off.

There are plenty of posters here who cheat and come for support b/c they need help. That's FINE. but people who treat it like a game/joke and cheat need to go ELSEWHERE.

We're making it worse by taking the bait. I would suggest people who don't want these kinds of posters here stop responding to ANY posts that aren't serious in nature. Leave the disrespectful ones alone and they will stop posting them.

[burdee]

Those 'newbee' comments about cheating may SEEM disrepectful of those of us who abstain from gluten (and dairy, soy, and other foods for some of us). However, they are courageously risking criticism from US, as they share how they struggle with accepting what they must do, despite the facts about healing from celiac damage and avoiding future related conditions or complications. People who feel secure about what they are doing don't need to boast or complain to others about their choices or actions. Those who are uncertain will passionately push their point of view on others, to convince them of what they really have not accepted themselves. So OUR passionate overreactions to reports or comments about 'cheating' reveal something about our attitudes about abstaining or indulging in gluten.

I cannot tolerate any dairy products (as well as gluten or soy). For months I could not find a safe substitute for creamy vanilla ice cream and would NOT allow my husband to have any ice cream in the house. When I finally discovered creamy banana sorbet (not vanilla ice cream, but sweet, creamy and SAFE), I finally bought vanilla ice cream FOR him. I had the same problem with chocolate (no tasty, creamy soy/dairy free chocolate) until I discovered Almond Breeze chocolate milk. It's not like a chocolate bar, but has a creamy sweet milk chocolate taste. I also love Double Rainbow chocolate sorbet with a rich, deep, dark chocolate flavor. Before I lose you all in a puddle of melted banana or chocolate sorbet ...

My point is that when we feel secure enough about what we CAN eat, despite abstaining from gluten, we can help newbees to understand that they do NOT need to feel deprived. They may not ever find a gluten free substitute for Krispy Kreme donuts, but they CAN BE HAPPY about all the other wonderful tasty gluten-free pastries that are available. Perhaps they will find something they like BETTER than Krispy Kremes, especially something which does not give them celiac disease symptoms. When we focus on what we CAN eat and really explore a variety of options, we can help newbees who cheat learn that they are only depriving themselves of peace of mind and fantastic health.

BURDEE

[darlindeb25]

I have been on this board for a long time and I have always been ready to help anyone--I am a moderator on this board and I quit coming here for a while because I was so sick of the nit picking going on--I am not going to name names, but I was finding that a new person would come in and ask a perfectly innocent guestion---like, "can i have .........?" and it would be something that was quite obvious to we who have been gluten-free for some time, but not so obvious to a newbie and some of you would jump all over them like they were idiots--I would privately email them and let them know that not all of us were so cruel and I would give them my addy to ask me guestions directly--one newbie told me she would not come back to the forum because she felt the answers were rude---so I think its time you all remember--when you are pointing a finger and accusing someone of being of guestionable character, then you better remember at that same time, 4 fingers are pointing back at yourself--remember that------by the way--everyone was so upset with mmm gluten--I emailed him and then added him to my messenger--he is really a very nice man with a wonderful sense of humor--dont tell him though, cause it would ruin his image in here---Deb

[darlindeb25]

I ALREADY POSTED THIS IN ANOTHER SPOT, BUT I THOUGHT IT MAY JUST GET MORE ATTENTION HERE--SO HERE GOES:

I have been on this board for a long time and I have always been ready to help anyone--I am a moderator on this board and I quit coming here for a while because I was so sick of the nit picking going on--I am not going to name names, but I was finding that a new person would come in and ask a perfectly innocent guestion---like, "can i have .........?" and it would be something that was quite obvious to we who have been gluten-free for some time, but not so obvious to a newbie and some of you would jump all over them like they were idiots--I would privately email them and let them know that not all of us were so cruel and I would give them my addy to ask me guestions directly--one newbie told me she would not come back to the forum because she felt the answers were rude---so I think its time you all remember--when you are pointing a finger and accusing someone of being of guestionable character, then you better remember at that same time, 4 fingers are pointing back at yourself--remember that------by the way--everyone was so upset with mmm gluten--I emailed him and then added him to my messenger--he is really a very nice man with a wonderful sense of humor--dont tell him though, cause it would ruin his image in here---Deb

[ianm]

In defense of mmm..gluten I really don't think he was trying to be condescending. I got the impression that he is someone with a dry sense of humor that just did not come across the way he intended. If we were all speaking face to face I don't think he would have provoked the reaction that he did. Since we cannot meet face to face it is good to remember that you must word your responses carefully so that they don't get interpreted the wrong way.

[angel-jd1]

Some people seem to be missing Jessica's point. It is not about cheating or not cheating, it is about RESPECT. Some of these newbies are coming to our board and intentionally or unintentionally disrespecting and mocking our way of life/problems.

I could care less if they cheat. I don't have to live in their body. To each his own. But don't come trolling around our board laughing about serious matters. If you're SINCERE with a question, fine. But the attitude of some of the new posters is very condescending, like this is all a great joke and we poor pathetic people who actually follow this awful diet and have all of these "psychosomatic" symptoms. That ticks me off.

There are plenty of posters here who cheat and come for support b/c they need help. That's FINE. but people who treat it like a game/joke and cheat need to go ELSEWHERE.

We're making it worse by taking the bait. I would suggest people who don't want these kinds of posters here stop responding to ANY posts that aren't serious in nature. Leave the disrespectful ones alone and they will stop posting them.

Thank you for "getting it".

-Jessica