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Guest thatchickali

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Guest thatchickali

I recently posted a topic to vent about something I was having a hard time with and received a very hurtful reply to my topic. I just wanted to remind everyone that when people post here they are posting to receive support, not a lecture.

This board is some people's only resource (living in small towns, don't know anyone with Celiac Disease to offer advice) so before you post something, THINK about the effect of your words.

We are all friends, sometimes we need to vent, and sometimes we need to celebrate. It is your choice what to read so if you are not interested in reading someone's complaints, don't. But if you can offer constructive and friendly advice to someone's rant, by all means, that's what we are here for-to offer advice and/or support.

Thanks,

Ali

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Ali, I read about your dilemma and feel bad for your situation. To have it topped off my someone reprimanding you can't make you feel good. I am new to the board and fairly new to Celiac (2 years). I don't claim to be an expert, but I hope you get out of that living situation soon. When it comes to pizza and cookies, I personally find those the hardest to duplicate to taste like the pizza and cookies I grew up with. I have given up on the cookies, as I cannot locate any that come close, but on pizza, there are some great options. Glutino has a great plain cheese pizza (frozen) that you can cook half way and then add your own ingredients. It's so yummy. And Kinnicknack (sp?) makes a great pizza crust you can buy that's also frozen. They aren't cheap - as most of the alternatives aren't - but they taste good.

I hope you have a better day!

Tups Girl

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This is my two-cents, for what it is worth. While it might not be the answer you are looking for, the spirit of my post is intended as support. We are all here for support. I come here to support my daughter because she is the Celiac, not me. I can learn things here I cannot possibly understand otherwise.

However, I am raising her to understand that she does live in a gluten-filled world and there are going to be some awful, crappy times when everyone enjoys things she can't have and not only that, but they might not even understand or care that she can't have those things. It would be very remiss to raise her to think everyone should accomodate her gluten-free needs--whether they be her eating needs or emotional needs.

While it isn't very nice of her roomates to act that way just to be spiteful and mean, it seems awfully representative of some people's personalities. Even my daughter at age 10 has kids at school who taunt her with cookies and pizza because they can. I've ordered her to throw up on them if they ever gluten her on purpose. :rolleyes: Not much comfort to the emotional pain it causes, but on the surface it provides some solace on how to deal with a difficult situation.

That said, ultimately we are all responsible for our own selves and keeping ourselves safe and healthy. Celiac disease or not, it is not the responsibility of a sorority, school, workplace, or any other place we encounter in life to guarantee our safety and happiness. That responsibility ultimately falls on us each as individuals. It is what drives us to make good choices about where we live, work, and educate ourselves. Of course we make mistakes! What seemed like a good living situation at the beginning of the school year for you is no longer the case.

That said, take as much responsibility for yourself as you can and assess what would make YOU happier and safer and healthier. Then, compare that to the means you have available to you to make changes in your life, and go with it. Whether it means working it out with your existing roomates or finding a new place to live. If you empower yourself to control your own situation, I think you will feel much better.

That's all.

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Guest j_mommy

I also read your post and I'm sorry you are having to deal with all of that!!!! Your home should be your haven and a safe place to eat and live!!!!

VENT ALL YOU WANT!!!! We are here as a shoulder if people need one!!! I have used a few shoulders too!!!

Good Luck to you!

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I think that buffetbride wrote an excellent response. As she stated, ultimately we are only responsible for ourselves in keeping ourselves happy and healthy.

I have raised two daughters and I have supported them every second of their lives, whether they liked what I was saying or not. Venting is welcome here, but you have to be prepared to get some unsuspected responses.

Ali, maybe for the time being, you should concentrate on your diet and keep the social situations to a minimum. This might give you some time to avoid conflict and gain the confidence not to be bothered by what others are doing or not doing.

I have sympathy in your situation and hope that it can be settled soon. Those early college years are rough. I remember them well <_<


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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And sometimes what we need (without realizing it) is someone to smack us in the forehead and say "get real".


"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.

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I have raised two daughters and I have supported them every second of their lives, whether they liked what I was saying or not. Venting is welcome here, but you have to be prepared to get some unsuspected responses.

Amen to that. My life became a lot easier when I accepted that people will not always agree with me and that often times I can learn a lot from other people's criticisms of my actions/thoughts/ideas. I am forever grateful for my parents repeatedly reminding me that if I ask for advice, I better be ready to stomach the solutions and suggestions that people give me.

I think I would be feeling quite down, as you are, if I were in your current living situation. But if is impossible/impractical to remove yourself from the situation, challenge yourself to make the most of it. There will be heartless, annoying, etc. people in every domain of your life -- school, work, relatives, the list goes on. Right now you are getting the best practice possible for dealing with all of those difficult personalities that you will unfortunately be faced with for the rest of your life. Rise above, be the better person, and at the end of the year you will have gained a lot of skills in dealing with people like that. Imagine your satisfaction at the end of the year when you get through this difficult situation and you think "I did it; I didn't think I could but I did!" That would be huge for your self confidence.

If your roomies are intensionally glutening you then that sounds like a situation you need to get out of if at all possible. I can't stress enough that if you do get someone to sublet your room, get it done legally and in writing so that if they take off you are not held accountable for their rent. I'm sure the last thing you need is to be dealing with two rent checks a month.

You sound like perhaps you are feeling rather lonely. Feeling like that gets you down and then its hard to deal with everything. Small annoyances can seem like unsurmountable challenges. I was a miserable, lonely, depressed student when I first went to university. But it does get better. Don't be afraid to see a counselor at your school if you're not already. I did and it helped me adjust. Are you able to go home and see family and old friends some weekends. It might help if you can have small breaks from your stressful situation.

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I have to say the whole celiac at work thing really got much easier once I stopped worrying about going out to eat and what I couldnt have when it was birthday time. I actually look forward to going out eat now, I eat a salad mostly and when we have in-house lunches I bring something I can enjoy.

for example tomorrow is Bosses Day and we are having a pot-luck lunch for our boss. I am making chicken scampi. I am using Tinkyada spaghetti. I make gluten free pantry brownies to share alot too. My coworkers are understanding and love when I bring in stuff, the plate always turns up empty. I started bringing them into my world and everything got better.

Good Luck :)


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

36_22_10[1].gif

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Guest thatchickali

Thanks for your responses, but I just think in general, not just in relation to my room mate posting, the words need to be supportive and uplifting, and if you don't want to read someone's rant, then you don't have to.

*About the smack on the forehead, some of us are a little too sensitive for a smack, we need open arms and to feel safe, loved, and valid.

I am lonely and I would be willing to bet a lot of us newbies are.

"Be kinder than necessary, for everyone you meet is facing some kind of battle."

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Thanks for your responses, but I just think in general, not just in relation to my room mate posting, the words need to be supportive and uplifting, and if you don't want to read someone's rant, then you don't have to.

*About the smack on the forehead, some of us are a little too sensitive for a smack, we need open arms and to feel safe, loved, and valid.

I am lonely and I would be willing to bet a lot of us newbies are.

"Be kinder than necessary, for everyone you meet is facing some kind of battle."

I'm new to the board, and newly diagnosed. It's hard and at times I feel alone too. Try and get yourself surrounded by people who support you and although you can't expect others not to eat things that you can't, there are still people out there who will care.

Where I work, there was one woman who was insulted that I didn't eat her dish she brought in for a birthday celebration (even though I politely explained why). Another explained to me that she lined her pans with aluminum foil, after she washed them, and baked plain chicken with no seasonings, just so I could have something to eat. She also brought in salad, and bottled dressing that was labeled gluten free. I couldn't have the cake (I love cake and cookies), but I was happy to have the chicken and salad.

Being around people who are deliberately putting those items in front of you with the intent of upsetting you, are not healthy to be around. This diet is tough enough to figure out in the beginning without putting up with that. I hope you can change your situation soon. Good luck!

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Dear Ali,

Are we living in the same house? :lol: My parents are just like your roommates. They do the same things to me. It is infuriating! I got glutened again this morning and do not know how. They have the nerve to tell me to go out and get a job, when it is their fault I am not well enough to! :angry: You have good reason to be upset. You also deserve to be heard, and just as importantly, understood.

That is all I have ever asked, but despite this, people just do not get it. I am always the strange one, the bitter one, the ingrateful one. These people are my family, not the ones who raised me and did not believe me when I say I am not well. People can be cruel with their words, and I feel the same way you do. No one should post rude comments that are accusatory. I am a peaceful person, and avoid arguments as much as possible.

I am very aware of individuals who just like to insult people. In fact, recently, I have noticed a friend of mine on here being repeatedly badgered by another member. This person seems to like to get things going. They are what you call an emotional vampire, because they actually feed off of the energy by upsetting people. There is no reason this needs done, and it is a repetitive thing. The person I am speaking of even has started fights between people who always got along. None of this happened before their appearance. What is more annoying is, when people become upset, this individual then has the nerve to act like a victim like "Why is everyone mad at me?" :angry: I just cannot fathom people who do such things.

Regardless of your experience, I hope you decide to stay. I know it is difficult to deal with discord. I avoid confrontations. They are very uncomfortable. Still, nastiness is rare on this forum. The moderators keep watch, and step in when necessary.

Sincerely,

Jin


Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985

Asthma - 1994

Ovarian Cyst - May 1999

Anemia - 2000

4 More Ovarian Cysts - March 2000

Bloodwork for Celiac - November 2000 negative

Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy

Fibromyalgia - June 2001

IBS - June 2001

Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.

Thyroid Disease - August 2004

Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

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I am very aware of individuals who just like to insult people. In fact, recently, I have noticed a friend of mine on here being repeatedly badgered by another member. This person seems to like to get things going. They are what you call an emotional vampire, because they actually feed off of the energy by upsetting people. There is no reason this needs done, and it is a repetitive thing. The person I am speaking of even has started fights between people who always got along. None of this happened before their appearance. What is more annoying is, when people become upset, this individual then has the nerve to act like a victim like "Why is everyone mad at me?" :angry: I just cannot fathom people who do such things.

Sincerely,

Jin

It is horrible when people are being attacked when they need help the most. Picking fights is very childish. It is sad to hear this


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

36_22_10[1].gif

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It is very childish but the sad thing is it happens in every group, forum or anything online that i have ever belonged to. I was hoping it wouldnt happen here, but i guess i was hoping for too much.

I know it is hard when people tell you things that you dont want to hear.But those are the things that you just have to roll of your shoulders. If there are people on here you dont like, dont read their emails or if they respond to yours just skip it. Its just like real life you stay away from the negative energy. That is why i stay away from my biological fathers family, just too much bad energy to waste my time on.

It is hard living with others that are not gluten free. I dont make my family eat gluten free just cause my stepson and I have to eat that way. To expect them to is unfair to them. But they know to keep their stuff away from us, and for the most part they do. My kids are under 7, but it seems that they are more considerate then your roommates.

college is a hard time, im not sure what i would have done to be diagnosed in college. It was bad enough i was struggling with an eating disorder during those yrs, which i think was from celiac anyway.

paula


gluten, casein and soy free

on low carb/low sugar diet

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Dear blueeyedmanda,

I am shocked by people who pick fights. I just cannot understand why people do that. My friend was only trying to share information. All my friend wanted to do was help someone. This other person picks a fight periodically. Things will be alright for a few weeks, and then the nit-picking begins again. As you said, it is childish and uncalled for.

Dear Paula,

I agree that negative energy is toxic. It literally makes you sick. Healing is impossible when you are surrounded by it.

The negative people around us can drain us of our energy. My family is bad about that. I try to stay away from people. Sometimes, just being in the same room with one of my parents puts me in a bad mood! That is how bad the energy is!

Sincerely,

Jin


Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985

Asthma - 1994

Ovarian Cyst - May 1999

Anemia - 2000

4 More Ovarian Cysts - March 2000

Bloodwork for Celiac - November 2000 negative

Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy

Fibromyalgia - June 2001

IBS - June 2001

Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.

Thyroid Disease - August 2004

Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

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*About the smack on the forehead, some of us are a little too sensitive for a smack, we need open arms and to feel safe, loved, and valid.

We can't always know that. Your response (in the other thread) was great. -basically "that's not what I need right now"

All I'm saying is most people ARE trying to help, we just don't know what you need most at any particular time. If it happens again, try not to take it personally, it likely wasn't meant as an attack.


"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.

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Ali

After being the subject of a few threads like that myself, I rarely post anymore. Feel free to send me a private message if/when you need to vent.

D.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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The person I am speaking of even has started fights between people who always got along. None of this happened before their appearance. What is more annoying is, when people become upset, this individual then has the nerve to act like a victim like "Why is everyone mad at me?" :angry: I

Things are often far more complicated than they seem. Nobody can "start" a fight between two people who get along, unless those two people decide to fight.

Sometimes there are 3 sides to every story--1) what one person thinks 2) what the other person thinks 3)what really happened that neither one of them totally understood.

Communication is not always a simple thing. Words can carry different feelings than the speaker (or writer) means, based on context and perspective.

Like Jestgar said, what one person considers support, another considers an attack! We don't have any way of knowing which kind of support you are looking for. Those of us who are older and more experienced know that the most valuable kind of support doesn't always mean hugs and words of encouragement.

Ali, if all you want is hugs and words of encouragement, and you post a thread asking for only that, isn't the result just a little bit artificial? That's like asking to be told that you are right, when in reality, not every one will feel that you are right. They may have an entirely different perspective, one that might be valuable to hear, but if you only want the positive feedback, you won't even know that other perspectives exist!

The attitude that comes across from your posts is that you expect every one to cater to your needs. You expect your roommates not to eat home-baked cookies in their own home if you are around. You post a rather whiny, complaining thread here and expect everyone to offer only, "Oh, you poor baby." You expect people not to post if they don't agree with you.

Life isn't like that. When you get into a job situation, the people you work with and for will be constantly judging you--not just your work performance, but your behavior. In fact, it'll be kind of like being on this board. You write something, people will form an opinion--and if you're lucky, you'll find out about it. If you're not lucky, people will just whisper behind your back.

You are responsible for your your own behavior--which means, that to some extent, you are at least partially responsible for how others perceive you. Sure, we all make mistakes, misjudge others, etc. But most people aren't purposely misjudging you!

As for picking fights, yes, a few times, I have seen people here truly pick fights. They never stay long (they usually get kicked off the board). I have also seen people express strong opinions. There IS a difference. Sometimes opinions clash, and people get quite passionate about defending their opinions. That doesn't mean that they are picking fights with each other.

There are a lot of people here who have been through far more than you and me put together! I have learned a tremendous amount from the more experienced people here.

I hope that you are able to take a step back and learn from them, too.

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Dear Alison,

I agree that people do choose to argue. I always avoid that. Strong opinions can come off as a disagreement. The trouble is when people refuse to do so respectfully. We have both seen that occur. This is unavoidable no matter where you are to a point. Also, misinterpretation is a problem because we are typing and not in person discussing these things.

It is always good to give the benefit of the doubt. Communication is complicated. That is why it is so difficult to understand the tone of what a person writes. There are people picking fights that will get what they deserve. Normally, these people will be blocked if there is a pattern of trolling. It can be hard not to take things personally when we feel strongly about something, but I realize that others do not understand the situation completely all the time. Lack of understanding is the most significant factor in most disagreements.

Sincerely,

Jin


Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985

Asthma - 1994

Ovarian Cyst - May 1999

Anemia - 2000

4 More Ovarian Cysts - March 2000

Bloodwork for Celiac - November 2000 negative

Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy

Fibromyalgia - June 2001

IBS - June 2001

Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.

Thyroid Disease - August 2004

Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

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Ali

So glad to see your still here.

you said you needed hugs so that's what i'll provide..........{{{{{{{{{{{{ HUGS }}}}}}}}}}}

Judy


Judy in Southern CA

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Ali,

I agree. Sometimes this forum is all some of us have and being that celiac disease severely affects every aspect of your life, we need certain kinds of support. And sometimes, the only people who can understand the kind of support that we need, are the people who are experiencing the same things and are willing to discuss their techniques of adapting and dealing. It is like getting the chance to learn from the wise and the wise to pass along their knowledge in hopes that we can each have a better life or at least take away a positive experience with another person.

I used to feel like this was a safe place to post as well, because I thought most people would understand the issues surrounding the disease and realize the sensitive state we all live in. But I guess that I didn't realize that within the "coping" boards there would be so many other individuals posting who are trying to support their loved ones rather than living with the disease themselves. Not to say that there is anything wrong with trying to learn about the disease from people who are willing to disclose it on the forum - we all know that anyone can read these posts - but this forum isn't just for others to learn about our disease. While, I know it is hard for loved ones to cope with the disease as well, there are some of us that do not have much more access to information about our unique issues other than this board. I would rather not forget that the forum is created for those who have the disease otherwise, it would not be named after it. If we cannot feel safe posting here, some of us have nothing left. I feel that it is unfair that this board has to be taken away from the ones who are really suffering and reaching out for help because of rude replies.

I think that it is a conflict of interest at times when our lives, stories, and situations that we post on this board are being used in other ways rather than to reach out for help and receive it. I know that sometimes people can believe that they are helping or being supportive, but let's face it, who likes to go to a counselor or who likes to confront someone with an issue that is very important, and receive a negative reprimanding response. I feel that we are all intelligent enough to pause and think of others' perspectives. Sometimes, it seems like anyone could give us advice, like "be strong" or "hang in there", but sometimes I feel like that advice applies to any situation, but I really need some specialized advice - that is why I come to this board. To me, sometimes the disease is socially embarrassing, which is a fragile emotional state. I do not need to be put down anymore or else I would not be here on the board. I come here as a haven from it all. I'm with Ali, that I probably will not feel safe posting on here in the future. I feel like there are just differing perspectives about what the board is meant for.

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I feel that it is unfair that this board has to be taken away from the ones who are really suffering and reaching out for help because of rude replies.

:blink: Nobody has taken anything away from anybody.

There are many different kinds of support. Everyone here who posted on this thread tried, in their own ways, to be helpful. If you don't like the kind of advice that was offered, you don't need to follow it.

And I don't understand why you wrote, " But I guess that I didn't realize that within the "coping" boards there would be so many other individuals posting who are trying to support their loved ones rather than living with the disease themselves." As far as I can tell, everyone who posted on this thread has gluten intolerance/celiac, but even those who don't have it but post in other threads are living with it, to some degree or other, and have valuable perspective to offer.

I'm sorry you don't feel safe. But I feel even more sad that you feel that people are not helpful just because it's not the kind of specific support that you are seeking. Seems to me, people are offering helpful advice left and right; but if the person asking for help is either unable or unwilling to use the help in the spirit it is given, that's neither a failure of the board nor of the person offering their time and knowledge in an effort to help.

Perhaps the best solution might be to have a thread devoted specifically for hugs and positive feedback, but as I said in an earlier post, that is artificial. It's like pushing a button to hear a recording of, "you are right." Wisdom, growth, and strength don't come from that kind of support for the situation described here.

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This board can certainly not be all things to all people.

I do have to say that overall the people that post here devote a great deal of their time, experience, research and a giving hand to everyone that asks to the best of their ability.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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I used to feel like this was a safe place to post as well, because I thought most people would understand the issues surrounding the disease and realize the sensitive state we all live in. But I guess that I didn't realize that within the "coping" boards there would be so many other individuals posting who are trying to support their loved ones rather than living with the disease themselves. Not to say that there is anything wrong with trying to learn about the disease from people who are willing to disclose it on the forum - we all know that anyone can read these posts - but this forum isn't just for others to learn about our disease. While, I know it is hard for loved ones to cope with the disease as well, there are some of us that do not have much more access to information about our unique issues other than this board.

I'm sure I must be misreading this section. Can you help me understand? Are you saying that people who do not have celiac disease should not be able to come here looking for support? My son and I have celiac disease - my husband and daughters do not. We all live together in a totally gluten-free house. This disease affects the people in our house that can eat gluten to nearly the same degree as it does the people that cannot. Where we go to eat, how we deal with the school for my kids, etc. Just because they are not the ones with the symptoms doesn't mean it doesn't affect them. I think it's a slippery slope. One could carry this further to say that only people who have a diagnosis should be able to post here and not the people who have negative bloodwork and/or biopsy but have positive dietary results. Should moms or dads without gluten intollerance but who have celiac kids or autistic kids be able to post here?

People should be able to come here for all kinds of help or support for all kinds of reasons that stem from celiac disease or gluten intollerance. Maybe we won't always hear what we want to hear, but that wouldn't be a support group if we did. We won't learn as much without differing feedback.

Please don't take this as a personal attack, because that is not my intention. I am just trying to understand.


-Colleen

Dx 8/05 via bloodwork and biopsy (total villous atrophy)

13-year old son Dx 11/05 via bloodwork and biopsy

Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

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I think it's a bad idea to have unreasonably high expectations of a bunch of random strangers on the internet.

I'm sorry some people are so upset though.

p.s. that wasn't directed toward anyone specific...just a thought that pops into my mind often while reading threads like this...


"Let food be thy medicine, and let thy medicine be food." - Hippocrates

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