Are You Positive Or Negative About Having Cd?

[Billygoat]

I'm a pretty positive person. Glass half full personality. I've not always been like that. I've struggled with depression for many years of my adult life. That's changed for several reason I won't go into now - a story for another time. But at one point in my life I realized that I HAVE A CHOICE about my reactions to life. When something happens that I don't like or unexpectedly pops into my face, I have a choice to act negatively or positively about it. I have a choice to NOT follow through with my gut-level reaction, which honestly, is not always the healthiest reaction.

I guess I'm writing this because of an observation I've made on this discussion board. When I state this, I don't mean to sound patronizing and my intent is purely to stir up discussion. I read a lot of people whining. Whining about an unsupportive spouse, whining about getting "glutened", whining about how foods change their ingredients list, this that and the other. Rarely do I read a thread about a positive experience. Now before you get mad at me for stating that, think about this...

We all struggle with something that is genetic. We cannot help being celiac sufferers. It is OUT of our control. Okay. So what IS in our control? What we put into our bodies. WE ARE ULTIMATELY in control of our health. Is it difficult? Of course it is! Who WANTS to live like this? Let me tell ya, I miss Krispy Kremes and Dominoes worse than any normal girl on a low-carb diet. I think you guys understand that better than any celiac disease spouse!

But I guess I like to look at ourselves as PIONEERS. We are trailing through the ignorance of the masses - taking care of our health, educating our family and friends, tuning up our doctors, steeling ourselves for those weak moments or "mistakes" when we get glutened, training ourselves to be disciplined and read labels. THIS IS A GOOD THING!!! Just like the pioneers in the women's suffrage movement and civil rights movement, we are shouting from the rooftops how we can improve our lives and other celiac disease sufferers lives. Whining about it isn't accomplishing anything. All it does is make the frustrating moments that much more frustrating. Yes, venting can be healthy. Yes, this is a place to do it because people understand. But are you hear just to vent or to share a victory over this disability? There are some things that can help us change our attitude about this.

Accept that celiac disease is something you can't change. Accept that YOU ALONE are in charge of your diet. Accept that there are people that don't give a flying fig what you eat or how you feel after you eat. Accept that some food companies will not be forthright about their ingredient list. Accept that your spouse will use the stuffing spoon to stir your gluten-free mashed potatoes without thinking. Accept that YOU ARE A PERSON OF POWER without having to be PERFECT!!!

Like the doctors of centuries ago (and today if you think about it) our lives are experiments of trial and error. Eat something that doesn't work with your body? Eliminate it. Try something new. That doesn't work either? Find a home recipe that DOES work. The really cool thing about celiac sufferers TODAY is that we have options. Yes, Kinnikinnick charges a fortune for shipping. But we have the option of ordering. Twenty years ago, celiac sufferers just didn't eat donuts and bread. Yes, it's hard to find a place that carries gluten-free pizza dough and beer. Twenty years ago, a celiac would have laughed at the idea of eating pizza and drinking beer. This community has made LOADS of progress over the last several decades. Because of people like US! People that are the everyday consumers, making demands, educating the community, sharing recipes and experiences.

So my questions to y'all is this:

How are you turning the positive spin on your physical weakness? Are you complaining or accepting that it's one of the millions of things that make you YOU? Are you stepping up to the plate and taking charge of your health or expecting someone else to do it?

Think about it...

Andi

[Guest Viola]

For the most part I really agree with you. Having been on the diet for more than 16 years I know the huge progress that has been made and love it!

On the other hand, some of this venting does point out some things that need changing and others jump in to show how it could be made better. That's a good thing as well.

I do think that as a whole there is too much 'doctor bashing' I would rather see everyone print out "good" information and go into the doctor with it. Then if they are not willing to check it out .. go and find another doctor. We do have choices. And yes I know it's too long to get diagnosed having waited over 20 years. But things are changing, and it's up to us to keep them changing. A good attitude and proper information will do that much quicker than flying off the handle and walking out.

So ... if you feel the need, keep venting so we can pick out the problems and try and change them. I'm not sure I would call it whining. Although that happens as well, I think it is a small portion of this community. Most of us are simply looking for suggestions on making our day to day living better.

[Random Guy]

... But are you hear just to vent or to share a victory over this disability?...

<{POST_SNAPBACK}>

Homophones ruined anti-rant rants

just joking around Andi, to test if your positive attitude includes a sense of humor.

i'm new here. i think the information i'm getting here is awesome.

i also realize that my sense of humor may be different from the normal posts here. But that's me. i hope it doesn't offend anyone, or get me banned.

as far as being positive...

i've got positive labs, and no symptoms. it's all very new

being a 'random' guy, i expect to have my ups and downs, and i expect to drag all of you along this rollercoaster ride of mine. but through the highs and lows, i try to keep a sense of humor, laugh at the bizzareness of it all, and make it through to life's next crisis.

that said, a few days into this, and not yet being gluten-free, i know absolutely nothing about what you're all going through, soooooo, i'm sorry for wasting your time with this post.

-rg

[phakephur]

Andi,

When you say "celiac sufferers", are you refering to undiagnosed celiacs who aren't on the diet or anyone with celiac disease?

Most magazine articles refer to people on a gluten free diet as "sufferers". If a person is on the diet then their symptoms should disappear, so the implication is that the diet is a source of suffering.

[Billygoat]

Viola,

So ... if you feel the need, keep venting so we can pick out the problems and try and change them. I'm not sure I would call it whining.

I think this is KEY! As long as it is realized that getting a solution can make the biggest difference. Whining to whine does not make the situation positive or get anything accomplished. I am in NO WAY condemning those that vent...I know it's necessary sometimes. This is a frustrating illness to have. But finding the solution is what makes this illness such an interesting phenomena.

Random Guy,

just joking around Andi, to test if your positive attitude includes a sense of humor.

Of course! Seriously...when I get down about having this damn disease I get my husband to make a great potty joke. It's silly and sophomoric, but it helps ease the stress of not being able to eat normally. Besides, what is "normal" anyway???

phakefur,

(Love the moniker by the way!)

When you say "celiac sufferers", are you refering to undiagnosed celiacs who aren't on the diet or anyone with celiac disease?

Sorry about that. I meant anyone with celiac disease. I think many people with celiac disease still suffer, despite being diagnosed and on a gluten-free diet. There are diet slip ups, people that don't understand what we go through, etc. We all suffer. But we all handle it differently. I think it's easier to tolerate this disease if you go into it with a positive attitude and a sense of humor.

Andi

[laurelfla]

Homophones ruined anti-rant rants

<{POST_SNAPBACK}>

hahaha that was hilarious!

Andi, thank you for writing this post, because it made me think. i, too, am normally a glass half full person as well. i think it is fabulous that you have been dealing with this for such a short time and have such a marvelous attitude.

i still really object to the term "whining". i don't really think i've seen that happening on here. i see people needing to get their feelings out, and like i have said before, if we can't vent here, where can we? i come here, and to the people i correspond with whom i've found on the board, when i don't want to talk to my friends or family about this. i figure people here will understand.

when i read posts like yours, or i hear the term "whining" being thrown around, it makes me feel bad about myself for being negative, and it makes me not want to post what i really feel, because the truth is, sometimes i don't have anything positive to say about Celiac. (this all still feels very new to me, even though it's been a few months.) then again, there are times when i'm very grateful for my particular circumstances. but do you see what i'm saying? if i can't be negative here about Celiac, then i have nowhere else to go. friends are understanding up to a point, but when i talk to someone who has been there and really knows what i am talking about, it makes me feel better. i don't think it's the end of the world to say negative things about this disease or gluten intolerance. i also think i'll be able to be more positive about it when i have adjusted better to it.

[scotbarr]

[mightymorg]

I'm not actually diagnosed--I just got back from having the blood panel done!! However, if I were to have celiac, I'd be positive about it. It's an answer, and it's fixable. Ultimately, the gluten-free diet can be a lot healthier than a normal diet. What's so negative about that?

But, I have to say I'm not all to positive in regards to doctors...

[ianm]

Ironically celiac disease was the best thing that ever happened to me. It forced me to change everything about my life. I was an overweight loser and now everyone complains that they can't keep up with me. It was the reason I got divorced but I now have a terrific girlfriend who is way beyond anyone I could have ever imagined having a relationship with. I was days away from losing my job and my career is now going full throttle. celiac disease is a wake up call to get you to take control of your life and live it in the best way you possibly can.

[Rachel--24]

I think you make a good point. I don't consider being on this diet a punishment in any way...I think of the positive but I do have bad days and thats inevitable with this disease. Brainfog, depression, irritabilty...it all comes with the territory and we all go through it. I think the amazing thing about this board is that on those bad days you can always come here for support. When you are communicating with people who know exactly how you feel...it really does make a difference. Especially for those who are new to the diet...things can be scary, confusing, the body goes through changes and its not always fun stuff. This is a place to vent those frusterations because in the process we are actually learning from others and also people are learning from our own experiences. There are many times when someone posts something that went wrong with the diet or a restaraunt or a contamination issue. I am learning from ALL of these experiences. I never think of these people as whiners...if they werent here venting I wouldnt have learned nearly as much about this disease as I have.

Also, I have posted positive threads (when I'm feeling great and upbeat) and threads which are less than positive (usually when glutened). I'm new to the diet still so I'm not always sure *how* I get glutened and usually I can get some answers when I post my frusterations. I think for the most part everyone on here is the same way...I dont see anyone as a constant "whiner".

[jerseyangel]

Rachel--I think you hit the nail on the head.

Of course there are negetives, Celiac is no walk in the park. But having this site to go to is a great thing we all have and is a definate positive. For me, finally knowing what is wrong with me after nearly 20 years is positive. So is knowing I can control it with a change in diet. Not that I'm saying its easy (or that simple) but there are no medicines with side effects, no horrible treatments or even frequent Dr. visits. It takes a while to learn how to live with celiac disease, but it can be done and we are all doing it. I'm still going through the ups and downs and some days I'm feeling pretty low but other days, I feel lucky and hopeful about living out the 2nd. half of my life happier and healther than before. I've never, not once, thought anyone on here was whining. I think its just that we all feel free to let it all out here--good or bad--

[Ursa Major]

Andi, I also think that people here are fighters, who do the best they can. Some days are terrible, when feeling awful after being glutened. It's okay to try to get some sympathy here then, where else will we get it? I would just hear from my family, 'I don't want to hear it, you're always sick, who wants to know?' People here understand because they've been there.

But for the most part, I think everybody is really positive here. And even through their negative experiences I've learned so much! I got no advice at all from my doctor, everything I know I learned here.

But I am positive about celiac disease. I am so glad I finally found out what is wrong with me, and what to do about it! When I tell people all the things I am intolerant to, they inevitably say, "I am feeling sorry for you, what CAN you eat?" And I tell them that they don't need to feel sorry for me, because I like meat and vegetables, and most of all, I like that I feel so much better now, and that I am finally losing weight!

Of course, without a sense of humour things could be hard. It's my sense of humour that keeps me going when the going gets tough.

[Matilda]

..

[Rachel--24]

Now I feel like the bad girl in school, and I expect the head-mistress will put me in detention.

<{POST_SNAPBACK}>

Ummm...will I be reprimanded for laughing?

Oh well...that was funny as heck!

[Matilda]

..

[Canadian Karen]

Hey Matilda! Whine away! I feel like (and certainly partake in) whining every once in awhile when I do EVERYTHING right and because of the collagenous colitis that just won't get under control, I still have enough diarrhea in a 24 hour period to fill an oil tanker!! Yeah, I figure a good whine-fest every once in awhile is good for the soul!!!!

Hey, maybe we will start our own Breakfast Club (gluten-free breakfast, of course!!!! LOL )

Hugs.

Karen

[cornbread]

I think for those of us who were sick - usually for years - celiac disease is very positive as it means finally being in control of our health. When I'm gluten-free, I feel more positive than I ever have. And even when I get glutened, I'm pretty good at staying positive because I know I'll feel fine again in a week.

The only times I'm negative about it, I'm not actually all "why me?" about having celiac disease, I'm actually usually pissed off at the attitude of people in the non-celiac world - waiters poisoning me just because they're too lazy to pay attention, friends and relatives upsetting me with ill thought out and ignorant remarks. I think it's fine to share these experiences with others on the board. When I read someone else's negative experience, sometimes it helps me because I've had the same one, or sometimes it helps just to know I can help them out by making a suggestion or just maybe saying "sorry, I know how you feel".

For those on the board who felt completely healthy but got diagnosed with celiac disease for example because a family member had celiac disease, then for them it's a shock and they probably feel like their world has ended and if they 'whine' about it here, the rest of us can convince them that it's not the end of the world. If they didn't type their 'complaint', we wouldn't be able to read it and help them with our replies. The whole board is about give and take. Helping others with our answers is as much a part of it as posting a question for others to help with.

[skbird]

I guess I see the positive in this post as well as feeling a little defensive, too. I don't mean to put too fine a point on whining, but I know that when I've been glutened and felt like I needed to vent about it, I have appreciated being able to discuss here. This is an understanding environment and it doesn't foster people dwelling on their sickness, but strengthens them with knowledge and support. I also don't think most posts here are negative, that there are many people here who have great stories to share and they help immensly.

So, in addition to attempting to be constructive and not knee-jerk, I will also post something positive - at my new job there are 6, count 'em, 6 people (me included), and TWO of them knew what Celiac disease is. AND then, my mom calls me and says my dad went out for lunch with a friend's nephew and the nephew is Celiac. Then my mom says, "I'll bet that if you started a Celiac club in Chico (population close to 100,000), you'd quickly have 1,000 people there!" I said, "well, considering 1 in 133 people are Celiac and that doesn't even account for the likes of me who technically am *only* gluten intolerant, there should certainly be 1,000 people in town who would qualify for that club!"

Anyway, interesting week!

Stephanie

[zippy]

I was so relieved that I know now what the problem is and that it is something that can be taken care of with something as simple as diet. Also, I'm very grateful to have found out now, rather than years down the road, as my sister did. The diagnosis was actually a relief to have, and explained many things that I didn't understand.

[mndude]

I was so relieved that I know now what the problem is and that it is something that can be taken care of with something as simple as diet. Also, I'm very grateful to have found out now, rather than years down the road, as my sister did. The diagnosis was actually a relief to have, and explained many things that I didn't understand.

<{POST_SNAPBACK}>

I'm glad it has a name because I thought I was crazy. The people talking about thier symptoms made the light bulb go off in my head. The diet is hard but improvement to my health is beyond what I hoped for. I say whine away. Not only is the info important but whining can be therapy as well.

[jkmunchkin]

I would definately say I am positive. When I found out I had celiac disease I had a pity party for myself for about 48 hours and then I did what I always do when presented with a tough situation.... I grabbed the bull by the horns and did (and continue to do) everything in my power to educate myself about how to help myself.

However just as you said you were not necessarily always a positive person; well I have always had this type of suck it up and deal with what is given to you attitude.

I had a childhood that a lot of people would have used as an excuse to sit in therapy for the rest of their life - I chose to let my experiences make me a stronger person. I found out when I was a freshman in high school that I had severe scoliosis and my spine was about to crush my lungs. I was faced with the choice of having a metal pole but in my back forever or wear a full back brace 23 hours a day for an indefinate amount of time. I chose the brace and to this day my dad is amazed at the fact he never once heard me complain. So when I found out I had celiac disease I took that same approach. If this going to be my destiny, well there is nothing I can do to change that and sitting in a corner crying about it is not going to help or anyone else. So I embraced it and that is why I'm on this board. To constantly educate myself how I can help myself.

On that note, what you interrupt as people whining I don't think is always that. When I read someone's post saying they are mad they wasted money on a bread that sucked, or were accidentaly glutenated at a restaurant; I take that as a "don't waste your money on this product." or a "be aware" kinda thing.

Everyone deals with things in their own way, and I don't think it's fair to pass judegement on how others are getting through this.

[gabby]

Complaining about whining....um, isn't that whining too? Yup, I think it is actually whining about whining.

Just a thought

[Nantzie]

I was just thinking about that Gabby.

So originally it was a vent about venting. Then there were vents about the venting about the venting.

It's a Vent-O-Palooza!

[KaitiUSA]

I don't see anyone on here as whiners. Everyone needs someone who understands to be able to talk to about good and bad experiences. We learn alot from each other on here.

For the most part I consider myself a very optimistic person and think of the glass half full. I was very sick and didn't know what was wrong with me so finding out I had something that I could control in order to feel better was such a blessing. I think everything happens for a reason and honestly think it has made me a better person and helped me in so many ways aside from feeling better.

I realize there are some tough times with it...and some people may wrestle with it more than others..each person handles it differently.

[skoki-mom]

Well, I guess positive for the most part, because there are far worse things a person could have, in my humble opinion. However, would I say haveing celiac disease is a "positive" aspect in my life??? Not really, no. I have no symptoms, so I could be killing myself with hidden gluten and not even know it. I don't feel particularily thrilled to have celiac disease when I catch a whiff of freshly baked bread, but oh well, life goes on. Basically, I am not ill, so I look at my Dx as a chance to make my future healthy, so that is a positive thing.

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.