Are You Positive Or Negative About Having Cd?

[pixiegirl]

After 13 years of symptoms I'm just really glad to finally feel better. I'm a positive person 99% of the time. I think its easier for me because I'm the "head of the household" here so I don't have to deal with perhaps an unsupportive partner. I really feel badly for those of you that have to do that. I don't blame anyone for a little whining, I tend to think most of us do that now and then and if not here, where everyone understands the issues, where?

So of us make changes more easily then others, for me going gluten-free was fairly easy and because I felt better almost immediately it was a positive experience. Not everyone is so lucky. I don't expect anyone's experience to be exactly like mine and if I can do anything to make it easier for someone I will. If they whine, so what.

Susan

[darlindeb25]

I agree with Billygoat--There is whining and then there is WHINING. I understand needing to vent, we all need to vent. Please do lash out that it isnt fair, cause it isnt. That's life, so much about likfe isnt fair. It isnt fair that the gluten free food they make for us doesnt taste anything like the real thing. In this day and age, they should beable to fix this problem for us.

BUT, when people whine about not getting to go out with friends because they cant stand to watch them eat things we cant have, now that is whining. We celiacs can do anything we set our minds too. I can enjoy my friends without food. I can sit in a restaurant with friends and not care what they are eating--I dont even need to eat to be happy. I enjoy their company, I dont watch what they are eating. I dont tell them---hey, dont eat that in front of me. That isnt fair to make them feel guilty just because I have a disease. Do you not put sugar in your coffee just because your friend is diabetic???? Do you not use cream because your friend cant tolerate dairy.

We have a disease and "we" had to adjust to it, others dont have to adjust to us, only if they are cooking for us. Deb

[Guest kim07]

If it wasn’t your intent to sound patronizing, Andi, I would have suggested some other term besides “whining.”

“Whining” is what children do to manipulate their parents into buying them the candy bar in the checkout counter. It’s what a teenager does when her parents tell her she’s getting a Volkswagen for her sixteenth birthday, instead of the BMW she really wants. It’s the way that spoiled, immature, self-absorbed persons irritate someone into giving in to some petty little demand; some pathetic want, having nothing whatsoever to do with their actual needs

I’ve never seen anything I’d call “whining” on this forum. I’ve seen nothing but a community of people with shared sympathies for the very real hardships that Celiac Disease has brought to their lives. While it’s very nice for you that you’ve developed the discipline to decide which emotion you’ll feel toward one experience or another, most people aren’t like that. The average person, and the average Celiac sufferer, probably still feels pretty “down” the first time they cancel visiting their families for Thanksgiving – just to avoid being a burden, and having to answer all the questions. They probably feel, yes, patronized, by the first half-dozen doctors they consult who either dismiss their condition as insignificant, or subtly mock them for having brought in their own research. And they probably feel hurt and insignificant when their spouses snack happily away on cookies, cupcakes or whatever, not even imagining the kind of screaming WANT that it brings.

My point is this: There are very few resources online for Celiacs in general, and literally none like this forum, where you can communicate exclusively with others who’ve experienced the same things you have; who know what it’s like to have bloating in your abdomen that cripples you for days, or to go without any real sleep for -weeks-, when you’re broken out with DH or, like me, with hives. And even other people who know what it’s like when even the people closest to you wind up failing, resenting, dismissing and even deserting you, over something you can’t control any more than you can change your eye color.

I’ve seen no “whining” on that topic, but I’ve read some heartbreaking examples.

Again, this forum is the only place I know of, where this is possible, and where someone mourning the heavy and real toll that Celiac Disease has taken on their lives, can speak with, learn from, and obtain validation from others like them. In any place like this, there will be times when the community mood is light or dark, and almost always there’ll be people who’ll be having good days or bad, some people who need a shoulder more than others from time to time. There will be everything that makes a community, a community, in other words.

[nettiebeads]

I've been thinking about my answer since I first read your post. I don't think positive or negative. It just is. Period. Maybe you would consider me a fatalist, but I don't waste emotionally engergy deciding if something is "good" or "bad". If I can't control it, then I just control my reaction to it and go with it. Which is for the most part what I've done since day one. What I don't like is dr's who won't treat, understand or give bad info. People who are intolerant of someone who is different. (We're all different in some way, just like everybody else). And those who think that I could be "cured" if I just take a certain product (my brother and his wife with their Reliv. I set them straight on that matter) I surround and focus on people who add to my life (dh,dd, true friends). Life is too short to let those who affect you negativly to have a place in your life.

[Rusla]

I don't consider having this a good thing. I do know, even after being gluten-free for two weeks how horrible I feel on gluten and how my skin breaks out instantly with the gluten. Is this positive or negative. In some ways negative there will be things I miss, but it is positive because I know how good I can feel without gluten and horrible I feel with the gluten. It is positive because we are not alone and we can educate others and that includes the medical profession.

When this week of gluten is over, I know I will not go back to gluten. I had no problem staying gluten-free, and I attribute that to having people who support me and to living alone. It is easier living alone and doing this than living in a house full of people and trying to do this.

This in a strange way is like a person who has been an alcoholic or drug addict. They can never stay clean if they are in a house full of people still doing those things. For a person who is celiac disease or gluten intolerant they stand the chance of being glutened when others in the house have glutenous products.

We all need people we can talk to and vent to who understand what we all go through and how we all feel.

I will never be happier than when this week is finished and I can go back to being gluten-free. I have to do this so the dermatologist will be able to get a proper skin biopsy.

[elonwy]

FWIW, I don't mind the so-called whining.  We all have rough days and it's nice to find a group of people who truly know what it's like when you'd almost cut off your tit for a Big Mac.

<{POST_SNAPBACK}>

I have been laughing for the last ten minutes. That's brilliant.

Elonwy

[bknutson]

I am brand new here and new to celiac disease. I have enjoyed every thing I have read on here and I have learned so very much. Every one on here is so supportive of each other and so willing to answer anyone or just talk to them to help. I even had one person say if they were close to me they would come over and cook me some soup cause I had the flu on top of being new to celiac disease. We are he to be friends to lift one another. we all know this is hard, and alot to learn

I have not heard one ounce of whining. I have read frustration, concern, confusion, fear,

gratitude and many other things. I for one am gratefull for everyone of you on this forum. I am grateful that I have celiac disease instead of something worse. Or instead of one of my children having it. But I am sure there are times that I will be down and upset. I dont think that is whining and you know what, even if it is, so what. We are all on here because we are needing each other, and support of someone who knows what we are going through, what we feel and that means good and bad, high and low. I thank you all for everything and if someone wants to say that its whining then so be it, but I am happy to have found this place... Barbara

One more thing, HAPPY THANKSGIVING TO EVERYONE, And thats to gluten-free pie crust mix I get to have pumkin pie for thanksgiving, my favorite..

Barbara

(that was supose to be thanks to gluten-free pie crust mix) sorry