Stimulus. Absorption. Effect. Response.
Back in my wildly unsuccessful acting days, I kept the above words in my wallet and before each audition, I read them to remind myself to slow down; to not just read the words on the script, but listen to them, let them sink in, determine how they would affect the character and THEN respond.
It worked wonders. Instead of getting just 1 out of every hundred jobs I auditioned for, I got 2 of them 😉
But even after all these years, I still remember those four words. And as we continue our fight for celiac awareness, I want to remind everyone, myself included, to not skip those two middle steps.
We certainly are NOT a bunch of whiners but after a month of amazing awareness and results, I do want to make sure our message continues to get across in the most effective manner humanly possible.
I was reminded of this after I received a comment from Charlie on my Today Show blog post over the weekend. Here’s how it started:
Alright, I’m just going to go ahead and say this: You are all acting like a bunch of whiny bitches.
He went on to make a bunch of nonsensical comments about how our complaining is hurting our cause and not helping our cause. And he said that we have plenty of awareness already because we have Udi’s, Schar, Red Robin, Five Guys and In ‘n Out.
Yeah…I’m not sure what his point was either.
Do I agree with him? Of course not.
And if he wanted to make his points a topic of civil discussion, starting out by name calling is not the best way to go about it.
But it did make me think a bit on how we need to continue to fight the good fight, but still make sure we come across as a respectful, yet very passionate, community.
The comment generated an excellent dialogue between Charlie and a few members of our awesome community (myself not included as I took a needed weekend offline.)
After a quick war of words, Adalaide came on and wrote an incredibly thoughtful response. She did not name call. She did not attack. She simply presented our case for why we do what we do and respectfully laid out why she disagrees with Charlie.
And thus started an awesome discussion.
Look…I’m as passionate as they come when it comes to celiac disease. And there is no doubt that we need that passion from our community to fuel our cause. That passion got one of the biggest companies in the world to pull a TV episode before it aired. Pretty cool stuff.
Do I cross the line at times? Absolutely.
Does it hurt our cause more than help it? I hope not.
Do you have my permission to give me a kick in the pants when I go overboard? Sure thing.
Mrs. Dude and I always say we need to “pick our battles” with our kids. And I think that same mentality can work for our cause.
We can’t boycott a restaurant chain because of one bad experience.
We shouldn’t start a petition on change.org every time we are wronged.
And we shouldn’t react without first listening.
Keep up the passion folks. We’re changing the world.
Let’s just try not to live in a “glass case of emotion”.
Dude-
I tend not to be an emotional type. More sarcastic and cut to the chase type. That is why I hope charlie reads this comment. You are an effing idiot. get off this blog.
How is that for a b*tch Charlie…??
Jersey Girl
Sarcastic and cut to the chase is just what I love about you 😉
But at the same time, I’m totally cool with varying viewpoints on this site, as long as it’s done somewhat tastefully.
Cheers! I agree with you 100%. I think our passion some times causes an over emotional reaction. My father and I were talking about my personality and looking for a new job. His constructive criticism was for me to make sure I keep my emotions in check, and remember I am responsible for me, and my work, and to not get so upset when others aren’t holding up their end, just worry about me. As I’ve thought about this, I realized it’s really the best way to handle life. Yes we need to make sure people realize this is a big issue for us, but we need to take a step back when we get in some situation and figure out, how to make sure we act like respectable adults by doing so.
There’s a balance in there somewhere Dee.
This raises several points–all worth addressing, so I have my coffee in hand and it may take me a minute to express my thoughts. so please bear with me…:)
hmm, well, yes. .. I do know a few “whiny celiacs” who continue to piss and moan about the diet LONG after the initial shock has worn off. You get to whine for a while, mourn it, throw some things around the back yard…but then it is time to move on. There’s plenty to eat. Stop being silly.
I also know many people who are just plain chronic whiners….about life in general (it’s too hot! I hate snow! the traffic is too heavy in NYC!
I only got 47 presents for Christmas! WHYYYY do I have to do thisssss??— whatever the” this ” is they hate doing) and to them, I say…oh hush up, and be happy you’re alive and kicking.
But I do not think that calling attention to a good and noble cause is considered “whining”. Frankly, I have never seen a life-threatening disease get such a lack of respect.
RE: Charlie
I saw those exchanges and I thought the regular contributors here did a terrific job handling Charlie and addressing his thoughts (all things considered, since Charlie is offensive and rude and likely will not return)
One thing I learned long ago is to pick my battles. I also had to figure out not to let a random drive-by from someone affect me anymore. I used to get very defensive and easily hurt whenever someone called me names or questioned my integrity (on here or on c.com) and I learned that usually, name-calling results from having nothing important to say. Haters give people grief when they have unresolved issues of some kind and are jealous, petty or insecure or have no leg to stand on in a fair discussion.
It is one thing to attack the argument with valid information (this makes you appear reasonable and intelligent)
and quite another to attack the person. (this makes you appear to be an unreasonable …hothead* )
**********************
P.S. I was going to write another word there (like asshat, wanker, poopyhead, or dumbass) but then I would just be doing the very thing I was trying to say is incorrect.. so I have only said it inside my head. 🙂
I just nodded my head in agreement with your entire comment.
which gave me a crazy idea….maybe we need GD bobble head dolls.!
🙂
I understand we shouldn’t try to get emotional but the truth is, my health is an emotional thing.
I would like to know if Charlie tells his friends with diabetes to “suck it up”? Does he go on blogs for gay equality and call them “bitches”?
The reality of this country today is we decided to not discriminate against anyone for various reasons. There are plenty of laws on the books that will show this has been the norm in our country for a long time and is still in process today. We are not asking for special treatment, we are asking not to be discriminated against. There is a difference.
I would challenge anyone to not get emotional when they are asked to leave a restaurant because the manager tells you, “we cannot accommodate you here and we suggest you leave” because you ask questions about how the food is prepared. The humiliation of being asked to leave is overwhelming.
No, I don’t want special treatment (trust me, I’ve eaten enough plain salads to prove this), I just want to not be made fun of, not be the center of attention at the table and eat my meal and enjoy it. Is that too much to ask?
They asked you to leave? Wow! That reaffirms my opinion that it’s best to call ahead to make sure the restaurant can and is willing to accommodate me. This is what people sometimes don’t understand in terms of the sacrifice we make, though it’s one we elect to make for the sake of our health. You can’t just go out to dinner. Every time I travel there’s an extra bit of research I always have to do to make sure there will be a number of options for food, and because that’s not always foolproof, I always need to carry food with me. It’s not necessarily the tastiest stuff either. I end up being the host for a lot of get togethers just so that no one has to be put out trying to cook for me. If I do go out with friends I have to be the first to present several options for restaurants that I know will accommodate me. I need to be flexible so that friends will continue to want to go out for meals with me, but I also have dietary restrictions that I need to respect. It’s not whining to talk about these things. This is just our reality.
Yes I ws traveling and my dinner plans changed at the last minute. I did ask before I was seated and reassured that they could accommodate me. It was only after I ordered a drink and started asking about specific menu items, was I asked to leave.
I travel about 60-80 days per year for work and I do many of the things you mentioned but I will not be resigned to eating at home because I have Celiac. I am polite, respectful and understanding at restaurants and 99% of the time, the response is positive. More and more servers tell me they know someone who is gluten free or Celiac. One even told me she had just been diagnosed and asked for advice.
My point is, I do not want to be defined by this disease nor do I want to be singled out because of it.
“My point is, I do not want to be defined by this disease nor do I want to be singled out because of it.”
Love that!
Thank you for the post, GD. Seriously. We see it so often that folks on both GF/Non-GF sides and inside the GF community don’t listen to each other, call each other names, and it’s just not a productive thing. It hurts everyone.
We are allowed to have our emotions but we have to manage them in a way that is both healthy and safe for everyone. We have to open up our minds to what others have to say and speak in matter that is both respectful but upholds our beliefs.
Exactly J…thank you.
One of the handicaps of Celiac is we don’t look sick, generally speaking. Nor do we act like it, and if we do get glutenated there’s no immediate need for the epi pen since our throats won’t close and giant hives will not appear. We simply ask questions and then give explanations why we can’t eat certain things. And some ‘people’ call that bitching and whining and whining and bitching? I too have been kicked out of restaurants for asking about ingredients. Friends mothers called my mom to ask if I was contagious. I learned first hand how hurtful and unfair discrimination is. Yes, it makes me angry.
Charlie, do you make fun of a veterans missing limb? Laugh at the MS afflicted and their peculiar way of moving? Pretend you can’t hear in front of someone who’s deaf? In other words, are you always a crass waste of DNA or do you reserve it just for people with Celiac?
You’d be amazed how many of his ilk are around. I have indeed had people laugh over my husband’s Parkinson’s problems. I have an M.S.-like disorder, in addition to celiac, and an internet circle of friends with M.S. You can’t believe the garbage that gets said to us. I have a friend who wears hearing aids and has been told off–even by another deaf person!–for asking for simple accommodations so that she can fully participate in workshops and classes. In that last example, the other person who is hard-of-hearing and also wears hearing aids felt that it was “pushy” to ask (politely) that a loud soda machine be turned off during a workshop. Even though she herself couldn’t hear while it was running either, she felt it was “rude” to ask, and that the proper, nice thing was to sit silently and unable to understand anything that was going on. After all, people might get annoyed and not like you if you get “pushy” by virtue of speaking up. It would reflect badly on all people with deafness.
Sadly, more than a few celiacs remind me of that woman with a hearing deficit who thinks it is rude to speak up and ask, politely, for a reasonable accommodation. They believe that we should know our place. Don’t make waves. Otherwise people might get annoyed and not like us.
I think everyone who belongs to a mistreated minority gets accused of whining and being thin-skinned when they object to being mistreated. You just can’t take a joke! Lighten up! It’s a way of turning the problem back on the people you don’t want to respect.
After so many years since the passing of the ADA (which does cover us), it’s depressing that so many still don’t understand that it’s not “bitchy” or “pushy” to ask to be treated with decency. And that it’s not being “thin skinned” to object to TV shows that mock us and our disease and/or show that bullying behavior towards people like us is hilariously funny.
I’ve seen your traditional trolls here GD. The pop in and post 2 or 3 lines tops. They call us names and may come back to post again if they are replied to but that is that.
This guy just wasn’t one of them. He took the time to make an incredibly long post for a little name calling. So when I finished reading the post and all I could remember was being called a whiny bitch and a douchebag I read the post again. Then again. Finally I saw that he was attempting to make some points. I didn’t step in to be any sort of hero, I just thought that since he was attempting to make what he saw as valid points that someone with the ability to see past his inflammatory comments should take the time to respond.
I am going to go ahead and say here that without taking the time to explain to people who disagree with us why it is we do what we do in a civil manner, we will continue to be viewed negatively. That is what was happening with him. In part that is what happened with the responses to Hoda and Kathy Lee on facebook because a lot of people didn’t make civil responses. By all means, it is an emotional subject for us so be emotional. But attacking them and being verbally abusive via social media does actually just make us look like whiny bitches and douchebags. In this case it is less about choose our battles and more about how we fight them.
Your contributions here are more than appreciated Adalaide.
I’m glad, because I’m an opinionated snarky bitch and once you get me talking it is really hard to get me to shut up! You’re kind of stuck with me now. :p
Thank goodness I’m not the only one Adalaide! 🙂
And thanks for fighting this good and education fight GD!
A self proclaimed “opinionated snarky bitch”? maybe…..but you have a soft-chewy center.
… and it’s why I heart you.
😉
I think there are a number of us “snarky b*tches” on this website. God knows I have more than enough reason to be snarky (Celiac, actively being treated for breast cancer, working on a PhD at 43, former child welfare worker). But if you get pushed around enough (by celiac, by systems, by rude and pushy people who just don’t understand, by academics who want to infantilize you when you’re 5 years older than they are), snarkiness is a natural outcome.
But there’s a difference between being snarky and snarly. Snarkiness has a great ear for satire Snarliness is a dog that should probably be muzzled – unless there’s a doggone good reason to attack. And that’s ultimately the question: where’s the line?
I agree, Adalaide. I saw way too many social media posts to Hoda and Kathy Lee on behalf of we “gluten people” that made me cringe. I was embarrased and felt that the name-calling and venom did nothing to reflect what our community is really about or explain why Hoda’s comment was upsetting. (I’m not aiming this comment at anyone here because I didn’t recognize names.) I remember my grandmother telling me “If you go lay down with the pigs, then don’t cry when you get dirty.” The factual responses became upstaged by the nasty responses and all of us stood up with a little dirt on us because of it. We simply can’t sink to that level and get our message across.
I am proud to be a member of a community that is trying to educate, provide support, and make changes where needed. We also must remember that we are ambassadors for a medical condition that most are clueless about. When we address these issues publicly by hurling personal insults rather than sticking to facts we do nothing but shut people down from hearing us.
I used to be a snarler – until I snarled at the wrong person and she bit back with fangs bared. And to be honest I had it coming. On the other hand, however, other people stood up to support me despite my poor presentation and it got the point across in a far better way than I had originally handled things. Living with celiac to me means holding isolation, fear, and dependence in tension – realizing that I’m not always going to be able to contribute in everything 100% of the time and that will bring isolation; fear of whether eating anything that I don’t personally cook is going to make me sick; and being dependent on other people being able to articulate/describe what’s in my food and that they can adequately avoid cross contamination. We all have to hold those points in tension. I know from my own snarling past that I wanted it *all* – and I had to consign myself to the fact that I couldn’t have it all. Once I realized that part (and it was a grieving process), much of the anger melted away. So I make choices and run risks in relationship to what’s available and how I can manage. I’ve made some pretty bad decisions (such as blindly trusting the banquet captain at the membership breakfast for my national organization and being dropped to my knees in front of my peers with an attack 2500 miles from home and leaving the facility in an ambulance). This is, unfortunately, a part of the life. We are naturally suspicious and paranoid – we have to be! But we can also choose how best to deal with the suspicion and paranoia that governs our lives – and saves us from pain and misery.
I think its odd that people think its OK for a grown adult to go on a forum and call all the posters some pretty filthy names. Yes, his posts were well thought out. That is my point. He spent a lot of time thinking about what he was posting, including calling the other posters some nasty names.
I actually am one of the ones that thought we may have been making too big a deal about the whole Hoda/CG thing. I watched it and could barely understand what they were saying as they laughed and rolled all over the place. They really sounded a bit drunk and extremely silly to me. If they had been explaining a cure for cancer in that fashion, we wouldn’t have taken them seriously or understood what the heck they were talking about. But I never said you all were stupid or prostitutes or even wrong for your views. Because most of you are none of those things…..(said with a grin)
“I think its odd that people think its OK for a grown adult to go on a forum and call all the posters some pretty filthy names.”
I do, too.
That’s why I did not answer him.
That’s why I do not bother anymore with anyone who comes into any established online community just to berate them or to stir up trouble.
And that’s what I mean by my decision to “choose my battles”.
Usually what someone means when they say “lighten up” is “this doesn’t affect me so strongly so if it affects you so strongly ultimately that’s your problem.” But in reality we have so little actual research information on the psychological and sociological consequences of celiac and other food allergies (believe me, I’ve looked – I’m pursuing PhDs in social work and psychology) that until we push for such research to be done, it’s all anecdotal.
Not sure if any of these are relevant to your research??– but I had them bookmarked. If not, just disregard. 🙂
http://www.ncbi.nlm.nih.gov/pubmed/12353859
http://www.socialworktoday.com/archive/032210p24.shtml
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2660494/
http://www.ncbi.nlm.nih.gov/pubmed/20533598
http://www.ncbi.nlm.nih.gov/pubmed/18580599
http://www.ncbi.nlm.nih.gov/pubmed/21961090
http://www.ncbi.nlm.nih.gov/pubmed/22502725
Last time I checked major changes in attitudes have not been a result of complacency and rose colored glasses. It is better to have a few people like Charlie get all riled up than to censor ourselves in our reactions to inequalities and life threatening ignorance. A smart strategy is to react wisely and to the topics that matter and will make the most impact. If it results in a minority of people feeling threatened for whatever reason, then it’s all the more reason to keep on target to reduce stigma and ignorance.
Harrumph!
Once again Gluten Dude, you addressed a topic that was floating around in my mind the last few days. I wrote my own thoughts relating to this subject at 4:00 in the morning. Never, in a million years did I think awareness and acceptance would prove to affect so much of our daily lives with this disease, but they do so I need to figure it out quickly! Please read my garbled brain dump from early this morning and then tell me how, ideally, I should respond in the given scenarios. Honestly, I want to figure it out. Love my daily dose of Gluten Dude, and I think you should set up another website called Gluten Douche and that is where you can handle folks like Charlie.
Loved your blog post and I can feel your pain.
I must admit, Gluten Dude, when I saw Stimulus. Absorption. Effect. Response. my first response was “Yep. The Four Steps to a Celiac Attack.”
Ha!!! Me too!
Claudette…I’m not sure where you came from, but I am SO glad you are here 😉
Out of nowhere by way of Ann Arbor, Dude… 🙂
I have family in Ann Arbor, Claudia. Beautiful place!
Ann Arbor is beautiful…. and home to the best gluten-free fried chicken I’ve ever had. Exceptionally decadent… and should only be eaten in moderation! Especially good with the sweet potato fries cooked in a dedicated fryer… ooh, i can feel my arteries clog now! 🙂
Please give them a shout-out. I will be there in November for the birth of a grandchild and would LOVE to taste fried chicken again!:)
Yup. It’s Zingerman’s Roadhouse. Ari Weinzweig has been gradually experimenting with more GF options. And I’ve never gotten sick nor had to explain my needs there. Well worth the trip!!!.
Dang,,,now I want fried chicken..perhaps we need a road trip to Ann Arbor?
Come on out! I can’t offer you a place to lay your head (place is too small) but we could sure go to the Roadhouse and have a wing-dinger of a party!!!
The last few weeks have made me wonder–whatever happened to common courtesy? We live in a world where it seems to be “okay” to be caustic. Yes, I can be as sarcastic as the next person and eviscerate someone easily with words if I have to, but where does that get me? Now I am just as much of an asshat as the person I find offensive.
When I politely ask someone for directions, I hope he will say “sure, just go up here and take a left”.
When I politely ask the receptionist at my doctor’s office to make an appointment. for me, I hope she will say “Sure, when would you like to come in?”
When I politely ask the hubs to please open a jar for me, I hope he will say “absolutely babe” and do it
and
When I politely ask for a gluten free menu, I hope the person will say “sure thing–here you go!”
I do not need eye-rolls, a deep sigh, a snicker or a “oh everyone thinks they need to be GF!” snarky remark .(and honestly, I only saw this happen once and that poor boy was sorry he said something to me because I gave him a brief tutorial on celiac and he had to stand there and listen to it 🙂 )
Everything I do, I do with courtesy. I hope for it in return.
Sometimes, I do not get it, but that fault lies in the person who is
unable or unwilling to be civil and courteous. That’s his problem.
Whether it is about celiac, our various health problems, our religion, the color of our skin, or the choices we make in our clothes, hairstyles. hobbies, people should refrain from making disparaging comments.
Whose business is it anyway what you eat?? or wear or do with your time???? Mind your own damn business. And do not step on my toes while you do whatever the hell you want. Thanks! 🙂
Look, I am not the etiquette police, but you can be sure that I do not tolerate that rude behavior from anyone.
Does that make me a “bitch” or “entitled” or “whiny” any other nasty words we have been called lately just because we have made a simple request for civility ? Nope.
I am not taking on any of those titles just because someone is trying to label me that way.
This is just my opinion, I could be wrong. 🙂
You are completely right on all accounts here. Be polite and people should be polite in return. This is the way of the world… or at least it was.
I believe two things have happened, and one is linked to the other. First, with younger and younger people they simply seem to think it is acceptable to be rude. Their parents do not teach them the common rules of civility our parents taught us. I see this is children the age mine are, but not in my own children. Mine knew from a young age how to act like human beings and not like jerkwads.
Second, we are a world disconnected from people by being connected. Technology is a wonderful thing. As I got sicker and sicker it is the only means I had to continue having social relationships. But it can also be a toxic thing. The social relationships I had were through a gaming community. I watched as over the years I played that game it went from an amazing and helpful community as we were restricted to only the people on our own server, several thousand maybe, to the game opening up and allowing play between people across the entire world. Suddenly instead of playing with your “neighbor” who you would see again, and who could tell everyone else what a jerkwad you were if you were one, you were playing with complete strangers. Millions of people, and it was likely when you got grouped up that you would never see someone again. So what reason was there not to be a jerk? None. People would almost always act differently if someone from their own server community was in their group though. They would be more polite, as if their next door neighbor were watching them.
On top of the gameplay, I participated or simply watched and read the online forums. These were very toxic as well, but from the start. They always carried the anonymity. One person would pop in and be like “omg I have this brilliant idea!!!” And ten would come in and call him stupid, retarded, dumber than a box of rocks, maybe he should go kill himself… it is bad. Really bad. Its an idea, don’t like it? Freakin don’t say anything or offer constructive criticism, but there is no reason to be outright mean for no reason. Still, it is what the gaming community of this game very much is at this point.
I don’t know if it is that the gaming community is largely young, or largely toxic jerkwads, or possibly both. I do know that what I have seen in the gaming community of this game has begun to leak not only into the rest of the internet but into in person contact as well. First, people say things online they would never dream of saying to a person’s face. This should never happen. If you wouldn’t say it to someone’s face, don’t post it online because it is obviously uncalled for. Second, people now are at the point where they will actually say some of these things in person. All I can say to that is WHAT THE FUCK?!?!?!
And, because I cherish my sanity and believe that somewhere inside there is a piece of me that is not entirely jaded yet, I have left that gaming community I spoke of. It was difficult, silly as some people may think that sounds. I left years of hard work, dedication, friends that were like family. But it was simply too toxic to continue on. I have found a gaming community in an MMO that is full of friendly, helpful people. I was shocked beyond words at this and for the first time in a long time find myself truly enjoying the social aspect of gaming again.
Adalaide, I also think anonymity is a part of it. Even on this community, I’m willing to be open about what I go through but when I posted somewhere else that I’m in Ann Arbor, I wondered about the “etiquette of anonymity” that my response could have violated in the blogosphere. If you go through and check enough of my posts, it’s completely possible through the Net to piece together who I am.
It used to be that in psychology we’d teach this form of deindividuation with the example of the idiot on the ground looking up at the guy standing on the ledge of a building and yelling “Jump!” But now deindividuation is in the @$$holes who troll sites saying things that we never would have said face to face – at least, once upon a time. Somehow we think that being “frank” (that is to say, rude and curt) is a virtue. But one can be frank without being deindividuating.
And apologies for constantly referring to my discipline. I don’t try to sound like a know-it-all, but it’s my way of coping and maintaining emotional distance. This stuff gets me geared up, and when I get geared up I do stupid things.
Bahahaha, I’m right with you there on being inclined to do stupid things if I get all wound up. I’ve been known to be rude, but I do try not to be. I agree that being frank and rude are not the same thing, although today many people view them as the same thing. Sad.
I also could be easily identified if people pieced together my posts across here and other places. I’ve pointed out where I am from, where I am now, many things about my family, my husband’s family, my past. It isn’t exactly rocket science for anyone who knows me to read those things and be like omg, I know her!
And you don’t sound like a know it all. You sound like someone who is using the experience and knowledge they have at their disposal to make points. Isn’t that what we all do?
Cluadette,
No worries.
I have been accused of being a know-it-all too. just because provide links to articles, etc. or myth-bust.
Meh…we just offer advice and opinions. People can take it or leave it.
I have made my share of “emotionally charged replies” too…. ah well… we are human. I am always honest and frank, but I try to be compassionate too. It’s not always easy.
I finally just flat out told my family and friends…look, just read this blog post (or something on c.com)….this is ME, okay?…..I post as IrishHeart.
I did not mean to be “secretive” when I first started out posting on celiac.com, I chose a username because.I had no internet experience whatsoever posting on forums and I had no idea I was going to be posting for another 2.5 years. (I dunno….I may have chosen something more cutesy like “bunny lover” or “GF is sexy”)
It stuck. People call me Irish or IH–even after they know my real name.
My Mom tells people proudly “My daughter is IrishHeart and she is all over that internet thing…” (er, thanks, mom? ) hahaha!
I try not to use language my 86-year-old Mom would be ashamed of me over—–but even she has been known to drop the F- bomb. 🙂
And when I was chastised for saying “celiac blows” that time on here, I told my Mom about it…and she said ” After I saw what it did to my daughter, well, it does blow!” If my Mom says it’s okay, who else’s approval do I really need?
🙂
Man, we got off on all kinds of tangents today, but since this is not like other forums, I do not have to say “you’re off topic”. LOL
Dude! can we get some drinks over here, please???
that’s Claudette….sorry…poor woman is having her name butchered left and right today. LOL
I actually did choose my name with great care many many years ago. I’m sure that you already know where it comes from with all of your smarts and knowing my real name Irish. This is just another piece of the real me to float out there, but I am quite fond of my name. It isn’t something particularly common, even though it is one of the most classic stories ever told. Adalaide is the name from which my name comes. I wanted a name I could use online that would provide me with some amount of anonymity the internet requires while still allowing me to retain MY identity. (If by now you don’t know my real name, you either don’t read enough classic literature or watch enough Shirley Temple movies… or both.)
and you know why I chose IH…it was chosen with care too.
And the Shirley Temple clue is a big one! 🙂 .
I have a sense (backed up by colleagues in social psychology) that there are increasingly problematic levels of insecurity that lead to incivility. We are much more likely to make “fundamental attribution errors” (i.e. attribute our failures to situations outside of ourselves) when we are internally unbalanced. So when we make comparisons to others to get a sense of our bearings when we are unbalanced, we are more likely to select particular targets to help us feel better about ourselves. Which then leads to the question: why target people who can’t/don’t eat gluten? In part I think it’s because since eating GF is the “trendy” thing, the assumption is that everyone who eats GF is somehow pampered and privileged and we feel better when we “knock such people down a notch.”
Again, all my hypotheses, which may or may not be based in reality. But it could also explain how when the GF community itself behaves in uncivilized ways, it reinforces others’ bad behavior…
So essentially, you are saying that people become “bullies” or “exhibit rude behavior” because of their own insecurities? That makes sense to me, yes.
And some people are just modeling behavior they see in their own homes. I have neighbors who are rude, loud, obnoxious bigots who think it is okay to infringe on everyone else’s peace and quiet–but I do not balance it out by being equally rude and loud.
And this does not explain an entire population out there that
thinks is it “okay” to name-call, bitch-slap and persecute just because they are “annoyed”…shall-we-say… by someone’s dietary needs for valid health reasons.
To me, this a fundamental failure in their own personalities or upbringing.
I do not believe we can “make other people misbehave”
nor do I think standing up for myself means I have “become like them”.
(whew…..that was a lot of ” ” ) I know . LOL
Again, just my opinion. 🙂 .
Oh, there’s all of that too. I didn’t say my hypothesis was all-encompassing. But there’s also a nasty vein of the anti-GF rhetoric that proposes that celiac is a “rich white person’s disease” which we all know is bullsh*t (see one of Gluten Dude’s letters back in March). And there are lots of people who get their kicks and giggles out of making others (especially people who are perceived as having more intelligence, more money, etc.) feel small in order to feel better. And if people believe the “rich white person’s disease” bullsh*t, in the current political climate, this makes GF people easy targets.
By contrast, in the UK, GF food is considered “medicine”. Of course the downside of that is in order to get it paid for you have to go through some interesting hoops.
Which makes me think of something else entirely… one of the “red lights” in the child maltreatment world is “non-organic failure to thrive” and its opposite: uncontrolled morbid obesity in the face of normal eating. Given the correlates of poverty and maltreatment, how many of these kids might have either celiac or NCGI and it’s not being tested because doctors know the family cannot afford the diet? Hmm….
I really have nothing new to add because I’d be reiterating so much of what’s been said. If only this was as simple as avoiding gluten at all costs but as we all know it’s so much more than that. .
Claudia, you’ve got so much going on physically that I can’t imagine how lousy you feel most days AND to travel extensively for work to boot! On my first camping trip after being diagnosed, by day 5 of rice cakes and cashew butter ( I have multiple food allergies too), the poor choices commenced. I was ill prepared as I thought I’d “find” food to eat. Like what, snare squirrels, “gather” berries – see, no sense. Let’s say lesson learned.
This is so much more than frivolous whining, isn’t it. It’s about securing SAFE food. Many of our responses are being made from places of really poor health. On those days, the reaction can be angry, teary, passionate or none at all because there just simply is no energy. As David commented, we don’t always look “sick” (I can’t say this enough – I am grateful to be able to feel really good for periods of time) but on those days when we aren’t literally laid out, we drag our bodies around behind us. They’re what I call my “walking road kill” days.
We’ re on the right road. It’s always good to pause and reflect though.
So for today, I’ll be the one wandering and confused at the grocery store, draggin’ her body behind her with nary a sarcastic remark as I just don’t have the energy…..there’s always tomorrow.
“Walking road kill” – Sue, I love that description. I wish I had it when I was on chemotherapy. That was definitely me then. Now I’m wrapping up radiation and I definitely have those kinds of days though nowhere near how I did during chemo, where it was pretty much constant. Celiac + chemotherapy = freaking unreal exhaustion.
Claudette, I’m sorry – I called you “Claudia” in my previous remark when I KNEW your name was Claudette – sigh.
So, radiation and celiac is better than chemo and celiac – honestly Claudette, did you ever think you’d have that as a point of reference?!?
I’m rootin’ for ya, kiddo.
You’re a warrior, Claudette, without question! 🙂
Thanks everyone. I really appreciate the support. It’s been a very long hard seven months or active treatment that is drawing to a close.
When I was quite ill and dragging myself around, my neuro and anemia symptoms making life a living hell, I referred to myself as “dead woman walking”.
The light was gone from my eyes. Pics of me from that time show a woman who looks 20 years older, lifeless, with bald spots, my skin pasty and pale. Stick arms, etc…..
Sometimes I see people like this in the stores or at the dentist office or wherever….and I want to say:
“Honey, I think you have Celiac”…. and hand them a pamphlet!!!
Actually, I have done this on occasion. I just cannot help myself. I see celiacs everywhere (like that kid in the scary movie who sees dead people?) One phlebotomist who regularly draws my blood has “Fibro”, brain fog, arthritis, gall bladder disease, anxiety, hair loss, hypothyroidism, diabetes, etc and she looks vacant in the eyes. She is overweight and miserable. I know because she tells me every single time. I tell her” I get it.”..and here is why….
I gave her my doctor’s number.
Did she call him? nope. I urged her again. Nope.
Now, I make sure I do not go to her station anymore because the last time, she was so brain fogged, she screwed up the lab order and it cost me a huge out-of-pocket expense.
How many people do I think are driving cars, school buses, or handling air traffic control with brain fog from unDxed celiac??
LOTS.
Irish Heart-
I also See Celiacs- EVERYWHERE!! I recognize MY symptoms (brain fog, tiredness, irritable, ataxia, low B12, heart palpitations) in many people. I have tried talking to a couple, have given them this website to check out, and have encouraged them to either get tested or just try GF to see if they “feel better”. One in particular said that she has the same symptoms that I had, and yet doesn’t think she has Celiac??!! I don’t get it! I guess they are just not ready to hear it & will have to get to the obvious conclusion by themselves?
All you can do is lead the horse to the water, kiddo.
(but you can’t hold his head under………) 😉
Folks…although I am not an active participant in your conversation, I just want to say how amazing I think you all are. And no…I have not been drinking.
Yet… but it is 5 o’clock somewhere dude.
…um, .I think you left off a word., dude…….”.today” 🙂 🙂
I was reading something recently for work on the topic of diversity and inclusion in the public sector which is a big focus of government where I live and work. The focus of the material was entirely on accommodating people with what I’ll call “traditional” disabilities such as blindness, deafness and developmental disabilities. One of the stories shared was from someone who had developed vision problems as an adult and they said something that struck me as relevant and appropriate: “It is not life threatening, but it is life-altering”. Now there may be some debate about whether Celiac is life-threatening – I think it certainly can be if the gluten-free diet isn’t followed and/or someone has other complications. But speaking for myself, in my own personal circumstances, it is not life threatening (again, for me, but not necessarily for others). But it most certainly is life altering and that is a statement I want to scream at every person who tries to ridicule or minimize the disease we all live with and cope with everyday.
Long undiagnosed celiac (15, 20, 30 plus years) is most certainly “life threatening.”
The complications that arise from that transgression …(lymphoma, renal failure, bladder disease, etc) are life threatening.
People can die from complications of celiac disease.
But yes, non-dietary compliance is only a legitimate factor AFTER diagnosis.
I would call what happened to me “life-altering” to say the least.
To clarify, I was speaking for myself. I don’t, in my circumstances, consider MY Celiac Disease to be life threatening because I don’t have any complications. But I recognize that it is for many many others.
Gluten Dude (and anyone else who may be able to offer advice)!!!!! I’m so terribly frustrated! I’m 20 years old and I seriously believe I have celiac. However, I saw my doctor (GP) today, asked her about being tested, and she LAUGHED at me! I explained to her that I really thought I should be tested because I’ve been having diarrhea, constipation, stomach aches, cramps, heartburn, muscle weakness, joint pain and stiffness, brain fog, anxiety, depression, all for the past year. Recently I’ve become lactose intolerant and I get headaches EVERY time I eat something with wheat! I’ve also been having chronic fatigue (I sometimes take naps 3 times a day and still sleep at night) and irregular periods for over 4 years now. I’ve been anemic and vitamin b12 deficient my whole life, and was always underweight. I didn’t get up to 100lbs until high school. I explained that I also have a family history of small bowel cancer on my dad’s side, and other autoimmune diseases like diabetes type 1 and cardiomyopathy on my mom’s side. I have constant anxiety about food because I’m sick every day. And yet, my doctor says there’s no reason to be tested because I don’t have a family history of celiac (that I know of)! I’m very frustrated, because even though I live with my parents and I’m covered under their insurance, since I turned 20, the bills for my appointments come to me. I just got a bill from my last appointment where she prescribed antibiotics that did absolutely nothing for me! I don’t want to see her again because she clearly is no help, and I don’t really want to see a different doctor either because I have no money. I’m a college student working at a restaurant. I’m so fed up, I want to just go gluten free and be done with it. But I know my family wouldn’t take it seriously. As it is, since I gave up dairy, they are constantly trying to get me to eat ice cream and cheese pizza. My mom won’t even buy soy milk so I can have cereal for breakfast like I have my whole life. If they aren’t supportive of a non-dairy diet, how are they going to be supportive of a gluten-free diet, which is even more restrictive and cross contamination is an issue!? They’ve always thought I was a picky eater because I used to be vegetarian, although I’ve been eating chicken for several years now (but no fish, pork, or red meat). I would be happy to do all my own grocery shopping if I could afford it, but I can’t. I’m so depressed over this whole thing. No one seems to understand that I feel awful! I’d rather go hungry than deal with the consequences of eating. Any advice on anything? I feel so alone right now. Sorry for ranting, I probably do sound really whiny right now but I’m so lost.
Rachel,
I am terribly sorry that neither your parents nor your doctor is seeing what is right before their eyes. This infuriates me no end.
What exactly does your doctor think is the reason why you have all these symptoms, then? You cannot “make up” anemia, missed periods, and lactose intolerance. She is being incredibly dismissive, IMHO. You should be seen by a gastroenterologist. ASAP
Saying “there is no history of celiac ” in the family is ludicrous. SOMEONE has to be first for there to BE a history. No one in my large family has ever been diagnosed with celiac before me, either. That does not mean my father, mother and several others did not have it. They had all the symptoms but no doctor saw that either.
The only thing I can think of is this…If you cannot get someone to take you seriously, maybe you can save up and get a BioCard celiac home test kit? They have a 93% accuracy rate. If it is positive, take it to the doctor and show her. You will need a referral to a gastroenterologist for a biopsy.
If it is negative, you need to make a decision about going gluten free and doing what you need to do to get well.
If you lived near me, I would get you in to see my GI doctor.It is shameful that you should be ignored this way. Hugs to you.
Guess what? The family history of celiac is staring you in the face… it’s the small bowel cancer. Untreated celiac shows itself up in many ways in families… diverticulosis, small intestine (i.e. small bowel) and colorectal cancer, family-wide propensity for gallbladder removal, family history of anemia, family-wide treatment for tinea versicolor and tinea pinea fungus… I could go on. By the way… small bowel cancer is uncommon, and untreated celiac is frequently a culprit when it does occur.
Sometimes you have to do what you can to take care of yourself and **** the critics. I had to do that. It was through my determination to follow through with a strict GF regimen that the whole family story came out and we figured out the hereditary link. But I’ve been where you stand, and it sucks. Hang in there.
I cannot add much advice on top of what Irish and Claudette have already offered; except to say I’m so sorry you have to go thru this. You are getting it from all ends and all you want to do is feel good. It just sucks.
Please keep us posted.
Thank you so much, all three of you. I didn’t know there was a home test, but I’m excited to find out that there is. I’m definitely going to check it out. And of course I’m sorry that you guys are suffering with celiac, but it IS nice to know I’m not the only one to go through something like this. Thanks, you guys have really lifted my spirits. I’ll be sure to let you know when I find something out.
Rachel- I’m another Rachael with Celiac Disease. I can’t believe what you are going through. My only advice is to channel every emotion you feel. If you’re angry, use it to your advantage and be aggressive in your pursuit for answers. If you are sad, feel it and cry and kick and scream and you will feel a little better. Before you know it, you will be diagnosed correctly, and giving others some advice as they go through their own journeys. The gluten dude and the community he has around him, have helped me many times to laugh, cry, scream and start all over again. I hope you can feel the hugs that are coming your way through cyberspace! Best of luck to you!