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My Rant

Acersma

By Acersma
in Coping with Celiac Disease

Recommended Posts

confusedks Enthusiast
confusedks
Posted

Thank you! I think people take stuff a little personal sometimes. I have been guilty myself, but I try not to let people I don't even really know get me down. I try to only take the good stuff from this forum. And, I do LOVE it!!!

Kassandra :D

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cmom Contributor
cmom
Posted

I agree with both sides of this discussion. First of all, yes, we should be allowed to vent about WHATEVER we are feeling at the time and it should not be perceived as whining. Most of the time I am satisfied with my gluten-free life and can deal with it. At other times, especially if I am really hungry, tired, or under a lot of stress, I cry easily when we go somewhere and they offer nothing for me to eat. When others are experiencing these feelings, we should be there for them. On the other hand, sometimes posts are taken too personally. I have been guilty of this myself. There have been a few times since I joined the forum that no one, out of all the posters registered, bothered to answer a question I posted. Yet it seemed that others with questions received multiple answers no matter how many times the question had been asked before. Also, when I did receive a response, it could possibly be considered "snippy". I considered leaving but I have learned so much from this forum and the experiences of others have been so valuable that I chose to stay. I am not a poster than anyone would have missed, but I would have missed the forum. Maybe if we all try to perceive each other as friends, where we can speak freely, fewer feelings will be hurt.

Centa Newbie
Centa
Posted
I agree with both sides of this discussion. First of all, yes, we should be allowed to vent about WHATEVER we are feeling at the time and it should not be perceived as whining. Most of the time I am satisfied with my gluten-free life and can deal with it. At other times, especially if I am really hungry, tired, or under a lot of stress, I cry easily when we go somewhere and they offer nothing for me to eat. When others are experiencing these feelings, we should be there for them. On the other hand, sometimes posts are taken too personally. I have been guilty of this myself. There have been a few times since I joined the forum that no one, out of all the posters registered, bothered to answer a question I posted. Yet it seemed that others with questions received multiple answers no matter how many times the question had been asked before. Also, when I did receive a response, it could possibly be considered "snippy". I considered leaving but I have learned so much from this forum and the experiences of others have been so valuable that I chose to stay. I am not a poster than anyone would have missed, but I would have missed the forum. Maybe if we all try to perceive each other as friends, where we can speak freely, fewer feelings will be hurt.

I like all of what you said, cmom. The topic of this thread, attitude toward illness, is an important one. I'm glad it's being discussed here.

I think it's hard, maybe impossible to guess what a site member's attitude is, from his or her posts.

For example, do you know the motto, "fake it until you make it"? That means acting as-if you're confident, have things figured out, knowledgeable, strong pretty early in the process, as you learn how to and consolidate being confident, understanding and strong. I, for one, do this ALL the time, especially in the work world. Sometimes I'm confident, sometimes I'm faking it until I make it. Now how is someone going to deduce my state of being from my appearance of being upbeat (on this site, my written words)? .

Plus what is that old saying, "No poetry is written in Eden?" Meaning that when your life is going along just fine and you're happy, there's often no motivation to talk about it...you're too busy getting on with your life. I think it's possible that people bring their problems to the site, not the record of everything in their day. They come looking for solutions, or a sympathetic ear. There's no reason to write about a problem that you've already solved....

Where it gets tricky for me is not the topic of attitude toward illness, which I think is a serious matter, with sides to it, and I've appreciated this thread, because its contributors had more willingness to write about matters of living with the disease beyond the techniques of living. What gets problematic instead for me is the suggestion that has surfaced here and there in a few posts in it that posters "should" or "shouldn't" be posting in a certain way.

People ~WILL~ be posting as they like, bound only by the site rule of writing respectfully about others. One of the most precious things about this site to me is that it's a free space, no prior screening of members.

All best, y'all. Now let me go to the losing weight threads...I'm peeved about the box of Pamela's chocolate chip cookies that turned into more love handles. :D

I've appreciated this thread because people have had an extended back and forth in it that got beyond giving tips.

Ridgewalker Contributor
Ridgewalker
Posted
For example, do you know the motto, "fake it until you make it"? That means acting as-if you're confident, have things figured out, knowledgeable, strong pretty early in the process, as you learn how to and consolidate being confident, understanding and strong. I, for one, do this ALL the time, especially in the work world. Sometimes I'm confident, sometimes I'm faking it until I make it. Now how is someone going to deduce my state of being from my appearance of being upbeat (on this site, my written words)? .

For me, the "fake it until you make it" method has been indispensable when it comes to my older son. When Lucas went gluten-free, I was nervous and upset about it, but I HAD to play it cool. Kids take their cue from their parents. And he has adjusted very, very well.

Having said that, there are times when he does get sad and upset over something he can't have. Most recently, he told me that he wishes they wouldn't show Pizza Hut commercials on Nickelodeon, because they make him sad. And I did commiserate with him, agreeing that it was a bummer that Pizza Hut food is full of gluten.

People of all ages deal with this disease on all levels, whether it be missing a food that has been their favorite for their whole life, or having terrible health struggles that a gluten-free diet isn't helping. It's my opinion that they all deserve some sympathy; if they can't get it here, where can they get it?

Like many others, this forum IS my support group. I believe it's here for sharing information, and for supporting one another. Don't get me wrong, there's more than one way of offering support. But I do think that sensitivity and empathy ought to be priorities here.

geeze Rookie
geeze
Posted
I agree with everyone on this Forum that having Celiac's Disease SUCKS. It is something that will never go away. It is a disease that affects everything I do in my life. I hate it. But I also appreciate that it has given me power. The power to finally say no to the plate of donuts, power not to sit at my desk at work and eat cookies and brownies. Being diagnosed gave me my life back. Finally I could understand the depression, the rage, the fatigue, sinus allergies that plagued me all year long. The arthritis eased, the muscle and joint pain. The restlessness. I have been given back the energy to enjoy life! That is why I get so upset when I see MANY posts of Celiacs complaining that family, co-workers, food industry people are treating us unfair. I see it everyday as well. BUT. We need to remember we are in control of what goes into our mouths and bodies. If we are unhappy w/ co-workers having a treat in front of us then walk away. If you go to a restraunt and they won't accomodate you, walk out and find one that will. If you go to a family members house and they are contaminating you take your own food or start having the gatherings at your home where you are in control. We all agree that people should be more sensitve and accomodating. That is in a perfect world though and we don't live in one. My boyfriend, who lives w/ me and my daughter are doing their best, but they forget to wipe crumbs, or they offer me a bite...thinking they are polite or becasue they simply forgot. I am okay w/this and I remind them. Everyday they get better! It takes time. But we can't expect people who are uneducated about what being a Celiac is about to simply "get it" or understand. My daughter has had asthma since she was 2 weeks old...people still don't get second hand smoke or burning a candle or cold weather can put her in the hospital! But I educate people about it and they are getting it. This isn't a bash on anyone it is a reminder that it is up to us to educate others and not alienate them or ourselves! I do get down and upset w/ people as well. Daily. But they don't have the power to take my life anymore than Gluten does anymore.

Jody

Gluten Free since July 01, 2007

DownWithGluten Explorer
DownWithGluten
Posted

Ooh, is this a thread where can complain about this condition? Or complain about others complaining, or others not-complaining... ;)

no but, yeah. I'm sort of in the middle about it all. It is extremely inconvenient, I think, to have this. Lots of stuff I took for granted before are now gone. (Just going out to eat real fast - no, not fast food, but just anything). I lost a lot of weight too as a result of the new diet (and am skinny to begin with). Considering my favorite foods, and ones I used to think were "safe", were breads and pastas. I also feel somewhat like a burden to other people I'm with, when we're together. They're confined to eating at the same, like, three places as me - and they don't even have the problem. They say they understand, but I still feel like I'm putting THEM out somewhat. Or, one person seems to think I'm making a big deal out of it, and am not willing to try stuff. because she would just sort of "wing it" and try more things even if she WASN'T sure. Which is a big no-no as far as I'm concerned. So it's as if I'm going out of my way to be dramatic about it. And I'm really not. Frankly, I don't even think about the fact that I have this gluten-intolerance when I'm not in a position where I have to (ie, a food one). I wish more people were understanding ...but I do see a lot of awareness growing.

Maybe I'm just "lucky" because - I was in SO much pain, frustration, and despair before starting the diet...that it drove me to do it as a last resort. It wasn't like I just had to do a 180 on my diet out of nowhere, only because of a blood test. I was giving up all hope, and was already willing to "throw in the towel" by making this major diet change. So frankly, I was glad that it DID help, even though that means a permanent life change. Because if it hadn't helped, and I was still suffering? I don't know what I'd do. Curl up in a ball and give up hope I suppose.

So, maybe the context of how one is diagnosed affects how they react too. Me - it was a last resort after years of pain and inconclusive doctor visits, so I was "glad" I found something that worked, even if it meant I was gluten-intolerant. But if I was hunky-dory, only a few problems here and there, but nowhere near the despairing point - and THEN found out I had to do this drastic change - it would be more grief-causing I think.

Ideal situation = no problems at all. But unfortunately that's not the case with any of us - so I say, the silver lining is that there IS something we can do about it. AND, that awareness about this condition does seem to be increasing.

Nyxie63 Apprentice
Nyxie63
Posted

This is probably going to sound like a negative post, but it isn't really. Its therapeutic. :P

I've only been gluten-free for 3 weeks now (elimination diet) and still in the shock/grieving stage. During those 3 weeks, I've been glutened twice. Once by accident and once intentionally by doing a wheat challenge. Not an experience I want to repeat any time soon. At this point, I'm considering myself to be gluten-sensitive, pending further investigation.

I don't know other people have handled it, but I'm going to rant, rave, cry, whine, whimper, moan, and get this out of my system any way I can - on message boards, by blogging, and in real life. I have to get it out somehow. The frustration, the anger, and the feeling of loss are all emotional toxins that have to be released before I can fully accept and deal with this new development. That's just how I'm wired. Once the venting is done, I'm fine and can get on with things.

While its nice to finally have an answer, it's also a serious blow to have to add yet one-more-thing to the body dysfunction list. Add into that the added expense of paying for testing, new cookware, utensils, gluten-free foods, etc. on an already restricted budget because I can't keep up with my business anymore. And all the added time/energy its going to take to research acceptable foods, prepare them, etc. I barely have the energy to keep the house from looking like a bomb went off in here.

I've already found myself in tears at the grocery store. Not because I can't eat this product or that anymore, but because I can't have soy or corn either and that severely limits even a lot of gluten-free products. Its overwhelming, its frustrating, and its enough to put anyone's head into swivel mode!

You can consider this advance warning for further rants to come. Or you can consider it to be my reasoning for doing so. Or both. ;)

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DownWithGluten Explorer
DownWithGluten
Posted
You can consider this advance warning for further rants to come. Or you can consider it to be my reasoning for doing so. Or both. ;)

Rant all you want. ;) Secretly I'm glad when people do. I often suppress stuff like that - because heaven forbid I ever show I'm upset on the outside, it might be me purposefully making things "worse" than they are, or whatever some around me would believe. So when I see others expressing their anger/upset/unhappiness about things that I have, I feel more vindicated for what I do honestly feel inside, but often keep quiet about in 'real' life - heh.

And it really sucks that you can't have corn either. Wtf. That does eliminate a lot for you. ew. Like you and a lot of others on here, I do have other problems besides this - so sometimes it does get depressing and bog me down. Just, extra steps I have to take with certain things that are annoying, and having the gluten-free diet is a huge one.

Acersma Rookie
Acersma
Posted
  • Author

My point of this was lets take back some power! Lets not let people bully us. Lets prove that we are all strong. I have MANY hard days. I had a day last week where a waitress stomped her foot at me, told me they "couldn't do special needs meals" and rolled her eyes. I was Pissed! and then I cried. then I walked. I don't even know how but the other night glutend myself...threw up on my daughters birthday for about 4 hours! sucked. I just want us all to be able to tell our family "hey! I have this disease that makes me sick if you aren't careful and I can't be around you if you aren't supportive!" We just need to take back our lives. I love that I can come here and cry and complain and you all support me. I love that you all have new and fresh ideas on how to handle rough situations. I apologize to all that I offended. I also thank you! Good posts back at me to remind me that I am not always going to have the power to control everything. MY life is so screwed up right now that maybe it was a rant at me...either way. This is a great Forum. Thanks to you all I am not alone.

Jody

VioletBlue Contributor
VioletBlue
Posted

Oh yeah. I remember that. Crying in the grocery store. I cried the first time out of frustration becuase every brand of something, I don't remember what, that I picked up had gluten in it. I cried another time because they were out of stock on something I routinely drank and I knew I couldn't just buy another brand without first going home and researching. Then I cried in amazement when I discovered Vons had a small section of gluten free products. Then I cried when I discovered Vons had removed all the gluten free products from their shelves after a major remodel.

I'm hoping I've been through every possible variable because I find crying in a supermarket truly embarassing. But who knows ;)

People without gluten issues so take for granted grocery shopping. They have it so easy and they don't even know it.

Rant on.

I've already found myself in tears at the grocery store. Not because I can't eat this product or that anymore, but because I can't have soy or corn either and that severely limits even a lot of gluten-free products. Its overwhelming, its frustrating, and its enough to put anyone's head into swivel mode!

You can consider this advance warning for further rants to come. Or you can consider it to be my reasoning for doing so. Or both. ;)

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