Okay….I (like many of you), am a member of various gluten-free pages. I like that celiacs, in general, have a great sense of community and a wonderful willingness to help others out. Let’s face it: for being a bunch of strangers, we’re a pretty tight bunch! I have to be blunt here, however: Sometimes I wish I could just kick people off of certain pages…and it all comes down to the inevitable moment where one individual posts a question asking whether SOMETHING (insert random food item) is gluten free or not.
Now, it isn’t the question that gets my goat. (although sometimes someone will post something that CLEARLY lists about 20 different forms of gluten in it on the ingredients, which I know because they tend to also post a photo of the ingredient list, and I wonder how on earth they ever heard of gluten and never made it to the “wheat, barley, rye, etc… part….but that is another story…I digress….)
What really annoys me is that, inevitably, someone will just HAVE to point out that the particular food/beverage they are asking about is (wait for it….) “OMG – is NOT a health food!” and sometimes is “FULL of sugar and all sorts of processed things!”
This then leads to some defensive posturing in the third person about how they just can’t see how “someone” could possibly be concerned about “gluten” and NOT be concerned about being “healthy”?!
This is where I wish I could reach through my computer screen and smack them for being the selfish a-holes they are. And yes, I mean that. Why am I so offended by people supposedly wanting others to be “healthy”? (as if it were all about health-altruism….) Because it has NOTHING to do with them actually wanting to help others. It tells me quite clearly that they lack the ability to see a problem from a perspective other than their own…but are more than willing to pass judgement anyway. That makes it all about them.
So, for those high-and-mighty folks who just can’t seem to fathom why someone would ask if a certain candy or junky breakfast cereal is gluten free or not, allow me to enlighten you:
It probably hasn’t occurred to you, but for your information: everyone in the world who is gluten free didn’t go GF for the exact same reasons you did. That’s right: some people didn’t decide to “go gluten free” because of some fad or because they think it is some sort of health-food diet. You might be surprised to know that many people I know are gluten-free because their lives depend on it. Not to lose weight, or because they are practicing some fringe form of veganism…..but because they medically are required NOT to ingest any amount of gluten.
And with that prohibition comes a TON of psychological needs that have NOTHING to do with maintaining a certain waist-line, and EVERYTHING to do with being healthy as a whole person…and sometimes that means eating “junk” food, because sometimes being healthy psychologically takes a front seat to eating in a strictly nutritionally health way.
That’s right. While you are praising your GF willpower and basking in your know-it-all glory, you are failing to realize that sometimes people are asking for reasons that have NOTHING to do with YOUR priorities.
They might be asking because their child’s class is passing out Valentine’s cards and they need to know what treats are okay for their child to eat safely.
They might be asking because their 10-year old has never had a non-grown-up cereal and wants to see what the fuss is about.
They might be asking because they are trying to recreate a homemade version of a Happy Meal, as their child will NEVER get to have one in their life otherwise.
They might be asking for nostalgia, because they just plain miss something that they used to have and are not allowed to ever have again.
Whatever the reason, understand that having a little bit of junk food now and then (provided it is GF) might be what they need at the moment…. Not as a part of a balanced diet, but because being healthy is more than what you put into your body…it is about how you FEEL as a human being. And sometimes feeling isolated and completely alone feels worse than the physical pain that often accompanies this disease, and certainly worse than an extra pound or two.
To be honest, I am just glad they are fulfilling that need in a way that is still gluten free…. shouldn’t we actually be supporting them, rather than criticizing their inquiries?
And to carry that honesty a bit further, I’m going to guess that your judgmental GFy-ness probably doesn’t extend to 100% strict adherence, nor to always looking out for cross contamination, so I have to ask where you get off….? …..thinking you can judge someone for not eating “healthy”, when odds are you and your “fad-GF” are one of the reasons they can’t trust eating out safely? …and that the consequences of THAT have a far greater impact on their health than a few M&Ms could ever have.
So, next time you want to judge a celiac for asking if Reese’s Pieces are GF, take this advice: Just shut up. Congrats to you and your incredible will-power to be uber healthy in all that you do in life – good for you! (really!) …but good for them, too.
Look, I’m not advocating for an all sugar-cane diet. But I am asking you to look beyond the narrow lens with which you see the world.
Odds are that the person you are dying to be rude to will be leading a gluten free life for far longer than you ever will. I’m just hoping it is a happy one. (and shouldn’t you just be hoping that, too?)
I promise that I am not just some psycho mom who is hooked on a fad diet and set on making everyone else’s life hell because of it.
“I promise that I am not just some psycho mom who is hooked on a fad diet and set on making everyone else’s life hell because of it.”
That headline is how I closed an email I wrote to a caterer, after accidentally receiving the response he wrote to the organizer of an event that was to take place, with our home as the venue.
See, the event organizer asked if I would like this to be an adults only event or not. I pondered this, as I have children myself and think I’m pretty child-friendly, but ultimately decided that I would prefer adults only, since I don’t know these parents, and they might bring snacks that aren’t gluten free. I didn’t want a bunch of kids with gluten all over their grubby little hands to touch all of my kid’s toys and make it a cross-contamination nightmare for my family.
I didn’t feel I was being picky. It was a choice that was given to me, and I chose option “A”. As the organizer had copied the caterer on her email requesting whether I wanted kids there or not, I replied “all” as a courtesy. He, apparently, intended to reply to her, but replied to me only, instead.
The tone of his email insinuated that I was some uber-high-maintenance, psycho-mom on a fad diet and he encouraged them to change venues. I know I am sensitive to gluten comments, but just so you can judge for yourself, here are a couple of the lines from his email:
“Sounds like she has de-contaminated the house? Wierd…”
“I see some RED flags coming up that I don’t want to deal with here….”
Now, I should point out that it was known FAR in advance that any events held here have to be gluten free (with the exception of beer, since people don’t tend to stick their fingers in it and then touch all of my furniture and all of my kid’s toys before washing their hands….I digress.) So, in theory, this caterer already knew that all of his food had to be gluten free.
Second, I should also point out that we have had 4 events catered here in the last 10 months. One was for over 250 people. All of them were gluten free. Most of our guests were “normal people” (ie: they can have gluten, unlike me). And all I heard was how awesome the food was.
So, either he wasn’t planning to be that diligent with the whole “gluten free” thing, OR he thought that me mentioning things like cross contamination made me a freak not worthy of hosting an event featuring his food.
Whichever it was, I am irked.
After writing a reply (which I nicely copied the event organizer on, who I should mention is a lovely, well-educated woman who knows about celiac disease), I am still irked.
I have to admit….my email was less than kind, although always civil. I explained that it wasn’t just me being picky – that both my daughter and I have celiac disease. I explained about cross contamination, about 20 parts-per-million, about the very real increased risk of lymphoma, about my skeletal toddler, about her $38k hospital bill, about the feeding tube that was down her nose for months. I then explained that chefs had done this before, that it wasn’t new territory. THAT BEING DILIGENT ABOUT TAKING CARE OF MY HEALTH DOES NOT MAKE ME A CONTROL-FREAK B! AND THAT LOOKING OUT FOR MY DAUGHTER’S HEALTH DOES NOT MAKE ME A PICKY-PSYCHO-MOM. Of course, in my email response, I phrased it differently. It might not have been super-friendly…but at least it was gluten free.
My regular readers might note that I have gotten frustrated a time or two…or fifty-thousand…. when non-celiacs make a mess of my celiac existence. Today’s post is a bit different. Today’s post is an open letter to the celiacs of this world who are still eating gluten.
I have three sets of emotions for you: Disbelief & anger. Anger & defensiveness. Frustration and compassion.
1.) Disbelief and Anger.
This is a one-blog intervention here. What the hell are you doing? You KNOW better. You KNOW that you are damaging your body. You KNOW that even if your symptoms aren’t “that bad”, that you are STILL reducing your life-span and increading your odds of certain cancers and diseases. Why the hell are you still eating gluten? Especially since there is a glut of gluten-free food available now. Do you think that the rest of the celiacs of the world don’t also miss things like chocolate croissants and chewy donuts? OF COURSE WE DO!!!! But we don’t cheat because what we would miss even more is our families…our spouses and partners and children and siblings. We would miss our friends. We would miss the opportunity to DO something good in this world. Why would you put all of that on the line for something as stupid as a protein? Find a new food obsession. A new, gluten-free one. Just stop being stupid. You know better. You aren’t an infant or a toddler. You are old enough to drive a car and decide who should be president of the United States….why do you think you are capable of making those kinds of important decisions if you can’t even make one as simple as saying “No” to something that you know is a poison to you? This is a “forever” disease. There isn’t a cure for it. So put on your big-girl undies and find a way to accept it and then MOVE ON! Sure, it sucks…but in the grand scheme, it sucks a lot less than a lot of things, and you don’t have a choice anyway.
2.) Anger and Defensiveness.
So, I’m kind of mad about you cheating now…not because you are killing yourself (that was #1), but because your selfishness could end up killing my kid. That’s right. To the thousands of celiac kids out there, who aren’t grown-up enough to ask all of the right questions when eating out, you are their WORST spokesperson ever. Why? Because every time you go and eat gluten, everyone around you who knows you are a celiac (or that you shouldn’t be eating gluten) thinks that it is now “okay” for celiacs to have a little bit of gluten. They now think that a little girl insisting that she can’t ‘pick the croutons off her salad’ or ‘just eat the hot dog and not the bun’ is just being “picky”. We all know she is trying to advocate for her health and her life…. but you just taught those people to not take her seriously. So, on behalf of the thousands of celiac kids out there, I thank you for being a selfish jerk. Way to shorten my kid’s lifespan because you are CHOOSING to be an idiot. You just significantly increased a celiac kid’s chances of being cross-contaminated. ..and just because you decided that that isn’t important to you, it DOES NOT give you the right to do something that could so significantly shorten the lifespan of others. So, if you can’t do it for you, then do it for them. I know you didn’t choose to be a spokesperson, either (just like you didn’t choose to have celiac disease), but guess what? Your actions are still just as potent, so accept responsibility for your actions and just STOP!
3.) Frustration and Compassion.
Okay. So, I’ve chewed you out here. (not as much as I did in my mind, however….) Look….I get it. Truly. I do. I have celiac disease, too. I have cried in grocery store aisles… I have called countless companies about their products, waited on hold for eternity, and thought I was in the clear only to be told after an eon of listening to Kenny G. musak that I couldn’t buy/eat something after all. I have had to pack an individual, separate cupcake for my child to bring to almost every birthday party she has been invited to. I have gone to countless events for work or with friends only to find that there is nothing I can eat or drink besides water. I have stayed home for countless MORE of these types of events, just to avoid the anger and sadness that overcomes me each time I have to sit in a room full of people eating and talking and not understanding why I am standing there with an empty plate. I understand how angry you can feel when you realize that you will be thinking about every bite of food that you put in your mouth, 3 times a day, every day, from here until the end of your life. And I understand how much you want to just NOT have to think about what you are eating, at all. I know how irritating it is to watch a waitress cross-contaminate your meal for the second time in a row, where you have to decide whether to send it back (and eat dinner after everyone else is done with dessert), or simply sit with a plate full of food you can’t eat in front of you, thinking only of how much you have to pay for a plate full of poison. I miss those little hole-in-the-wall joints you could grab a nice, greasy burger at, or the thrill of enjoying a new cuisine, I know how hard it is to have any sort of spontaneity when traveling, since you always have to make sure that there is some place within 30 miles of your destination that will have something you can eat. I realize that this is even harder when you are in a place that does not speak your language. I feel for how tired you are of ALWAYS having to cook meals, and NEVER having take-out or delivery options. I know how superfluous “continental breakfasts” are, and yet how common they seem to be all of a sudden. I know how odd it makes you feel to be the “special meal” in all of your friend’s social plannings. And I know how expensive it can be to try and maintain a sense of “normal” when you have to be gluten free.
I get it. And I am sorry. You have a disease – one that you will never, EVER, be able to be rid of. One that REQUIRES you to be gluten free, every day…for the rest of your life. It seems like a long time….and that is why I am writing this. …because as angry as I am at you right now, the simple truth is that I WANT YOUR LIFE TO LAST A LONG TIME. I don’t want you to miss a minute of it. I don’t want you to suffer through it any more than you already are. I want your children and your nieces and nephews and friends to have to buy you gluten free brownies for decades to come. I want you to think about something right now.
I want you to truly think about why you are still eating gluten.
I want you to find a way to come to peace with that. It is means taking a week to binge on everything that you can never eat again before going and staying gluten free, so be it. Whatever it is, find a way to accept it.
Do it for you. Do it for the celiac kids out there. Do it for your friends. Do if for your family. Do it for your pets. Hell, do it for any umber of reasons….just please, please…find a way to do it.
I am sorry that you have celiac disease. I am sorry that it is so hard for you. I don’t know why you have it, but I DO KNOW that you can do it! You can. And if you are having a tough time of it, please reach out to the celiac community. We get it. We understand you. We’ve been there. We are in blogs (like this one!) and online and on facebook…heck, 1 out of every 133 people have celiac disease, so you are not alone. (And some of us are even lucky enough to have non-celiac friends who have pretty good shoulders to cry on…) So…what do you think? Think you can stick with it?
Yeah…I knew you could. 🙂
I’ve been a bit absent from the blog-world as of late (my apologies, I will blog about it soon, I suspect.), but thought I’d finally take the time to write about something that has bothered me for some time……well, actually, it has bothered me for about 1,497 days, give or take a few.
When I am out shopping…whether in grocery stores or even hardware stores (again, I’ll blog about this later), I can’t help but be faced with a barrage of “impulse-buy” items…. and having a sweet-tooth, I devote a few seconds to perusing the selection of sugary treats to see what I might have a hankering for. Inevitably, it will be something that had slipped off of the radar of my consciousness altogether until my eyes alight upon a bag of, oh…say…orange slices? or gum drops? You know…the candy that you never really have at the forefront of your mind, but which is a solid “Oh, yeah!” purchase.
So, despite indulging in a little impulse-shopping, I always look at the packaging to see if it is safe to eat. ALWAYS. And what do I ALWAYS find? Well, for starters, Brach’s candy company must have the corner on aisle and end cap real-estate in a certain radius to the check-out lanes I inevitably go to. Secondly, they ALWAYS have a disclaimer about possibly being processed on equipment that processes wheat, yadda, yadda, yadda. ALWAYS.
Now, look: you might think I’m just whining about some gum drops…and to be honest, if this was all it was, I’d accept it as fate’s way of helping me eat a little healthier (maybe drop a few pounds…), but this is about more than check-out aisle treats. That’s right. I’m talking about the big-time: Seasonal Candy.
And what’s my beef with this all? I am super irked that a HUGE company like Brach’s can’t get their act together and actually test their food. Their disclaimer seems like a legal catch-all to prevent them from being sued by anybody for anything. I’d be surprised to find that there isn’t something in their generic paragraph warning about getting papercuts from the plastic packaging. While this legal catch-all may comfort them, I find it annoying and haughty. Like gluten-free shoppers aren’t important to their bottom line to bother to see if they are, in fact, barred from eating their products.
And maybe we’re not…but it is a shame nonetheless. Every stinking year I have to trek out to the stores to hunt down some little hole-in-the-wall company to get stupid candy corn and conversation hearts for the holidays. Rarely is it ever as good..and most commonly it is at least twice the price. It is stupid, I know. After all, it IS JUST candy corn and conversation hearts…but it is bigger than that for me. It represents a huge company basically telling a portion of the population that we don’t matter. And that stinks.
I could understand if these foods actually did contain gluten….but I’m 99.99999% sure that they don’t. And you’re telling me that that equipment is making other candy that has gluten for the few months that you aren’t pumping out tons and tons of tiny sugar-laden hearts and bits of corn? Give me a break.
So, this blog is an indictment of lazy companies like Brach’s Candy, who could so easily provide some assurance to consumers with celiac disease by actually labeling when it is appropriate and not just as a generic catch-all, but who choose not to for reasons that are entirely incomprehensible to anyone with an ounce of common sense. Way to go, Brach’s.
Little companies all over the world have been able to have labeling that actually reflects the specific product it contains, and processes and equipment it goes through. Either you are so out of touch that you don’t see that, or you are so big you have lost touch with your audience.
As a former conversation-heart-aholic, I can say with absolute seriousness that I theorize they personally took a financial hit after I stopped purchasing their products back in 2007. But it is the ever-present, grating irritation I feel every time I see a bag marked “Brachs” that should be the real kicker to them. Celiac disease diagnosis is on the rise. Wake-up and get with the program, Brach’s! The train is leaving the station, and you’re going to be left in the powdered-sugar dust if you aren’t more on top of things like this!
P.S. The day you decide that celiacs are worthy of buying your products, please let me know….and please try and schedule it before the 2014 batch of conversation hearts hits the market.
I HATE celiac disease…
…you might have picked up that I am in a pretty surly mood at the moment.
This post isn’t about having any sort of grand revelation…. this is just a rant. (Fair warning – this post won’t ever be eligible for any sort of literary prize.)
I HATE GLUTEN!!!
This isn’t even the deep mourning I went into when I was first diagnosed. (Like when I would start crying in the super-sized grocery store because I couldn’t find anything to eat.) No…. that was part of a grieving process. I get that.
What this is, is just completely irrational anger. I hate gluten. I hate that it is in everything. I hate that the teensiest, tiniest little spec of it is poison to me. I hate that I can’t even eat anything that has touched a spec of it. I hate that (despite the good food they serve) I have to eat at the same 3 restaurants if I want to have a lunch meeting with a client. I hate that I have to pack a separate cupcake for my daughter when she gets invited to birthday parties. I hate that I always have to give people the third degree about what is in the food they made and how they plan to serve it. I hate that there are people in this world who think that people who can’t eat gluten are just being dramatic, or that we should just stay home and only eat there. I hate that some people, no matter how much you try and explain it to them, just don’t “GET IT”, and keep insisting on doing things that will cause me to ingest gluten. I hate that some people in my family won’t get tested because they can’t fathom how they would survive on a gluten free diet. I hate that they actually have symptoms and ignore it and I am asymptomatic and have to adhere to the gluten free diet anyway. I hate that I can never just pick up take-out or order a pizza to be delivered. I hate that most restaurants ideas of gluten free options consist solely of salads. I hate that next time I go to Germany I won’t be able to have a beer..and a pretzel as big as my head. I hate that my travels no longer include eating in little hole-in-the-wall places that we find whenever we get where ever we end up. I hate that sometimes the only place in a town that has gluten free food is always an Olive Garden (although their veggies are always surprisingly good.) I hate that no one in the entire planet makes a soft, chewy, bavarian-creme filled bismark that is gluten free. I hate that McDonald’s doesn’t have a gluten free happy meal. I hate that I will never again have a malt. I hate that my forays to the state fair no longer are excursions to try new fried foods, but instead super healthy meals. I hate that I have to shop in stores that smell like incense. I hate that I have to call companies to see if there is gluten in my shampoo. I hate that I get mad an envelopes that don’t have self-adhesive sticker strips on them. I hate that I will never have my mom’s cut-out cookies again. I hate that the metallic taste in gluten free pie crusts over-powers the flavor of the filling. I hate seeing “Vital Wheat Gluten” right next to a bag of gluten-free flour in the grocery store. I hate that I can’t bring home my son’s pasta-necklace for fear that it will get my daughter sick. I hate that Brach’s candy company labels all their bags as possibly being cross contaminated. I hate that I have to think about everything I eat, every time I eat a meal. I hate that I know what xantham gum is. I hate that there are no gluten free Spaghetti-O’s. I hate that I can’t order chocolate croissants anymore. I hate having to explain that I have celiac disease to complete strangers anytime we go out to eat. I hate feeling like a freak.
I hate gluten.
Pulitzer, here I come.
Yes. I did, in fact, start this post with a sigh.
As many of us know, celiac disease is quite under-diagnosed. Yet in the short years that have followed my diagnosis, I have seen it grow from complete obscurity to almost mainstream in terms of members of the general public having actually heard of the word “celiac”. (not that they really understand what it is, but at least they have heard of it.)
Most recently, I have even found myself in various non-celiac-related situations (at work, neighborhood functions, etc…) where I have met new fellow celiacs! I can only describe the feeling by saying it is like traveling abroad and finding someone from an entirely different state that happens to be in the same place you are. Sure, back in the US you really don’t have much in common, but across the ocean? Well, you might as well be long-lost first cousins.
I digress…. so, in the midst of this expansion of my celiac-circle-social-group, I have come to the startling (and disappointing) conclusion that MANY of us (“us” meaning CELIACS) are really slacking off. Seriously.
And I am frustrated and dumbfounded as to why this is.
If any of you have read any of my prior posts, you know that I can be irked with other people who lack an understanding as to the lifestyle celiacs have to lead. But as irritated as I can be about it, the truth is that they are usually just plain ignorant about it. They just don’t “get” it, because they don’t know anything about it.
But us? Us Celiacs? There is no excuse!
In the past month, I have heard the following (paraphrased.):
“I usually can eat one slice of bread without getting gluten’d.”
“The banana pudding is sooo good, you just have to scrape the cookie crumbs off the top.”
“Yeah, I don’t really worry too much about cross contamination.”
Seriously? I would ask if we all had woken up and taken stupid pills, but it would be an obvious “no”, since there is no way to mistake celiac pills for stupid pills since CELIAC PILLS DO NOT EXIST!
Q: You know what treatment for celiac disease DOES exist? What the ONLY treatment for celiac disease is (to date)?
A: Strict adherence to a gluten free diet – with cross contamination of less than 20ppm.
WE should know this. (and yes, I am yelling here…the caps lock is not on accidentally.)
Now, when I raise this concern (albeit, in a much calmer way), the answer I get without fail is something to the effect of, “I don’t get sick from only eating (fill in the blank with some amount of food containing gluten.)” And on one hand, I get it….people with mild allergies will often introduce those same allergens into their lives as long as the results are bearable, so I can see where a celiac who usually pukes for 2 days might contemplate that only getting sick for 15 minutes is a good threshold….until I remember that all of these people were diagnosed by doctors…who should have told them that this was not a safe practice.
See, the thing that they are forgetting is that the “sick” part of celiac disease is just a symptom. It is just a SIGN that internal damage has been done to your body. Take this for an example: Someone stabs you with a knife…you are bleeding out of a hole in your chest cavity. Your shirt just got wrecked. Man…that bleeding sure is a messy symptom. So then someone stitches that gash up, so the bleeding stops, and you can put on a new shirt. Does that mean that is was okay to be stabbed? I mean it was just once, right? But just because you have stitches on your skin, it doesn’t mean you aren’t bleeding internally…you just can’t see it anymore. (and no doubt if it keeps up, you won’t be seeing much of anything anymore.) See? That messy symptom was just a red flag (no pun intended) telling you about worse problems that you can’t see.
I am particularly confused by this laissez faire attitude, since I am asymptomatic. That’s right: I could eat gluten by the boat load and not feel it. No puking from this celiac, no siree! So, if I had the same benchmark, my gluten free diet would have lasted all of 1 day. Yet here I am, more than 3 years later, and I have never cheated on the diet. (and believe me, gluten and I were VERY close friends before all of this….)
Listen: I know it is hard. Being gluten free is so very difficult. You are reminded at least 3 times a day (everyday) how much it sucks, and how different you are than everyone else around you. I get that. I’ve been there. I know how intoxicating even the smell of bread is….. but if it starts to feel as though it is just too hard, or too much work, or too expensive, or too alienating, or too whatever, please take a moment. Remember the people and pets and experiences in life that you want to be around to enjoy. Remember the reason you decided to go gluten free after your celiac diagnosis in the first place. Heck, remember the chocolate-covered, Kinnikinnick, gluten free donuts… Just find a way to distract yourself from taking that “easy” route, because in reality, it isn’t easier, cheaper, less work, or more fun. In reality, it will dramatically reduce your life-span, make you more prone to certain cancers and diseases, and wreak havoc on your wallet for doctor and dentist bills in the long run.
I can’t really say that I care at all if you puke, or get gassy, or get migraines or whatever (although you have my sympathy)…. all of that stuff is temporary. I am writing this because I care about your LIFE. So remember: by eating gluten free, you aren’t just taking care of the symptoms…you are trying to take care of the cause.
So, a blonde, a lutheran, and a celiac walk into a bar…. Wait, that’s not quite right. Let me try that again.
So, a blonde, lutheran celiac walks into a bar….
(you’re expecting a punchline, aren’t you?)
Sorry to disappoint…you thought this was a joke, but it actually was the introduction to a biographically accurate portion of my life. I am all of those above things (blonde, lutheran, and celiac…not to mention huge fan of the Oxford comma).
Before I was diagnosed with celiac disease, my boyfriend / fiance / husband (same guy, different time periods) and I would go out with friends or co-workers for happy hour every now and again. I remember that another couple would meet us at “The Spur” for late night happy hours on Fridays or Saturdays and we would get some Mich. Golden Lights (er, I would….the guys had other beers which I can’t even pronounce), and then we would order about 4 appetizers,usually the nachos, potato skins, wings, and quesadillas. Yummm…
Sorry, lost in a moment there for a sec. Where was I? Oh, yes…..edible bliss.
Then, over time, we all grew older and suddenly kids came into the scene. Life got busy and hectic (and non-alcoholic, since 18 months of that time was spent being pregnant, plus all that time nursing…uy!) In the midst of all that my daughter and I got diagnosed with celiac disease. Now here I am, more than half a decade past knowing if “The Spur” is even open anymore, muchless what and when their happy hour specials are…but now the kids are somewhat more independent. And while I can’t honestly say that I would have the energy to even consider a late-night happy hour, I always thought that going out with other adults to have a drink or two and hang out would be something that would eventually pop back onto my radar.
But now I am facing the upcoming prospect of going out with some girlfriends for happy hour in a few weeks (yes, that is how old I am…we now schedule these things weeks in advance…), and I can’t say I am that enthused. Don’t get me wrong – I am looking forward to seeing these gals again and catching up. (how are the husbands? how are the kids? blahblahblah…) And I am looking forward to a couple of hours spent talking to other adults without having to take a time out to change someone’s pull-ups or pick crayons up off of the floor.
It’s just that this kind of social event has really lost all it’s spontaneity for me. And not from just having gotten old and everyone having such busy schedules. (I really don’t mind the “planning really far in advance” part.) I just think that “going out” is so predictable…. Think about it: it doesn’t matter where we go…what restaurant or bar….regardless of what theme they have, I know that my drink selection is either a glass of wine or a hard cider of some sort. I can all but guarantee that my beverage is NOT one of the happy hour specials. And speaking of happy hour specials, I can also pretty much guarantee that none of the appetizer specials will be gluten free, either.
So while back in the day we’d get a round of (fill-in-the-blank) beverages and a smattering of whatever appetizers looked tasty, I now get my solo drink and sit there (craving the deep fried platters before me) eating nothing, unless I want to spend a fortune ordering a meal or a side that never gets brought to the table at the same time as everyone’s apps.
And while some people take these occasions to expand their alcoholic-literacy by trying out a new beer every time they are out, I can pretty much say that I have sampled all of the gluten free beers and ciders in the area. (and this from someone who doesn’t even get out much anymore anyway) Are their good beers and ciders? Yes. Are there less than stellar ones? Sure. Either way, it is hard to get too excited.
If all the bar has for GF beer is one that I am not overly fond of, I will still probably get it…. I will end up spending as much for a single bottle of crappy rice-based beer at the bar as I would on half a 6-pack of bottles of a hard cider that I actually like. And even then, I doubt I’ll finish the whole bottle. So why even bother? Ahhh…we are back to our joke again…
Why does a blonde, lutheran celiac walk into a bar?
To get to the other side, of course.
Not to get all “Alice in Wonderland” on you, but sometimes I feel as though I am on the other side of the looking glass. I think that deep down (but not in my intestines…hahaha, get it? there’s a little bit of celiac humor for you), I am waiting for all of the social settings in life to stop feeling as though I am an alternate universe where I am invisible observer watching an incredibly realistic 3D movie whose plot line revolves around food. I mean, I’m IN the scene….and yet, I’m not.
It is this quasi-real presence in social settings such as this that really tends to throw me a bit off balance. (no pun intended, it wasn’t supposed to be a quip about the effects of alcohol.) To be honest, it is a social experiment of sorts for me to see if I will ever be able to get back to that sense of existing in “real time” when it comes to social settings that primarily revolve around food and drinks that I cannot take part of.
I keep hoping that, just as I have matured and aged, eventually I will come to terms with this whole mess and I won’t feel like such an oddity in those situations anymore. Each opportunity to confront this social absurdity is both dreaded and anticipated.
So, in a few weeks, this blonde, lutheran celiac will walk into a bar….I guess I’m expecting a punchline, too. Let’s hope it is worth a good laugh.
P.S. In case you wanted some dorky celiac humor after all…(warning, this isn’t really that funny…but you try to come up with a celiac joke….seriously….do try (I don’t have a “comments” section for nothing).
A celiac walks into a bar.
The Transylvanian bartender asks, “Vhat do you vant?”
She replies, “Is it true that you’ll have gluten free beer on special for happy hour…?”
The Transylvanian bartender replies, “Oh, VILLI ?!”
(ack, ack, ack….. )
In the time that I have had to deal with Celiac Disease, the one thing that strikes me as being most difficult for others (non-celiacs) to understand is the whole “cross contamination” issue.
On one hand, I fully understand why there is a disconnect when it comes to truly understanding what those words mean…. I mean, you hear someone can’t have gluten….then you figure out (sort of) what gluten IS. So then you think, alright – just avoid foods that have wheat,barley, rye and oats (I know, technically not gluten, but that is another issue). So you think, no worries! I will make some cookies that use other flour and it will be totally gluten free. Then when the celiac can’t eat it you wonder, “what the heck?!?” Or you pick the croutons off of a salad and wonder why your friend is puking their guts out 20 minutes later….
When most people have allergies or are on diets, we (as a society) tend to think of that as meaning “these people must eat LESS of a certain type of food.” People rarely make the connection to “these people must NEVER eat ANY of this kind of food.” (with the exception of peanut people…) …and even if a certain segment of society gets that far, they often fail to grasp that “ANY” means “ANY – including microscopic particles.”
Ever since I have been in this altered-plane of existence (being gluten free), I find myself watching things (constantly) that I never really paid attention to before. Like:
* Whether a plate with my food is carried above a plate containing food with gluten.
* Whether someone at a party is leaning over the gluten free food while munching on normal crackers.
* Whether the waiter/waitress handles a plate containing gluten foods and then uses the same hand to grab my plate.
* Where the waiter/waitresses’ thumb goes in relation to my plate (invariably, IN my plate)
* Whether people are taking serving utensils from the gluten free food and using them for other things temporarily. (also known as “Why I Can’t Eat at Buffets Anymore”)
* When a bag of GF chips are opened at a party, if someone has reached into it for chips or whether they pour them onto a plate or bowl.
* Whether my daughter touches a table-top in a restaurant while eating a meal.
* The faces of other celiacs when they spot something going awry with the above examples.
* The faces of friends / acquaintances when I interrupt a seemingly normal conversation by leaping backwards and clutching my personal bag of Cool Ranch Doritos to my chest like I am shielding a baby from a lion attack….all because someone came up and tried to grab a handful of chips out of my bag after eating a sandwich.
In all of these situations (and so very many more…), I am not afraid that I will be eating food that contains gluten…I am afraid of having my gluten free food cross-contaminated by people who have TOUCHED gluten. Often times, the first question I get asked when discussing that I cannot have ANY gluten is, “Well, how much gluten can you have without having an allergic reaction?” (This is wrong on so many levels, never mind that Celiac Disease is not an allergy but an auto-immune disease….but I digress…) I can explain the whole “20 parts-per-million” thing until I am blue in the face, and people will nod politely, but so far, the only method I have found to really convey what cross contamination is like for a celiac is this:
I look people straight in the eye and ask them how much rat poison is okay for them to ingest. I ask them how comfortable they would be eating dinner if the waiter’s thumb had touched the plate after he had set down a bowl of rat poison on the table right before mine. This usually elicits a weird, puzzled reaction from the person I am conversing with, so I have to quickly follow up with the missing connection:
“See, gluten is poisonous to me….so having someone handle my food after handling gluten is just like them handling YOUR food after handling rat poison. I’m sure you’d be watching to make sure they wash their hands and put on clean gloves. You’d be paying attention to see that your plate is above the rat poison plate and not being jostled while being carried below it. You’d keep an eye on that sneaky opposable thumb that always seems to end up IN your plate just after being in the rat poison plate, and you’d certainly freak out if someone whose hands were covered in rat poison tried to reach into your bag of chips! Heck, half the time you might think about going to dinner and after picturing all that rat poison all over the restaurant kitchen just decide it isn’t worth the effort of going out.”
Suddenly I see a light-bulb go off. The mysterious “GLUTEN” suddenly is something tangible that normal, non-celiacs can understand…their brains are visualizing something akin to a yellow box with a cartoon rat-face with X’s for eyes…. suddenly it isn’t this picky diet thing that no one understands… it is RAT POISON, and who the heck doesn’t understand that???
I have found that this technique works well among friends, but it works particularly well among strangers, because in reality, you only have a few seconds to get them to “get it” so you can move on to discussing something more enjoyable….like anything else in the world except gluten…… and I have found that this makes for a very memorable impact, and hopefully spares the next celiac from having to explain the whole reason they can’t eat any of the gluten free food that was provided at an event sometime in the future.
(sometimes I wonder if people in the 1800’s would have better understood the concept of “germ theory” better, had the scientists of the day just said, “It’s like touching rat poison – you might not see it on your hand, but you sure wouldn’t want to stick that hand in your mouth without washing it off first!”)
And don’t be fooled – my “rat poison” theory isn’t JUST a gimmick. (I say “just” because on one hand it IS a gimmick, but it happens to be true, too.) Gluten is like rat poison to us celiacs. Many times people focus on how sick some celiacs get when exposed to gluten, but bear in mind that that sickness is just a symptom of the disease….it is just a warning that serious damage is being done. A celiac exposed to gluten has a shorter life expectancy, so gluten has every bit as much potential to kill as rat poison does….it may be slower, but it can be just as painful, and the end result is the same: death.
Like it or not, we have to educate people, and the more people that understand the serious nature of this disease and it’s required diet, the better you will be, the better I will be, and the better celiac kids will be.
So, what’s a little cross contamination among friends? Turns out, what it is, is a good opportunity to change the way people perceive the eating habits of celiacs.
It is autumn here in Minnesota, which means that some of the leaves are turning colors while their compatriots have already fallen onto the grass and sidewalks. The weather is getting cooler, but it isn’t cold yet. Yes…autumn in Minnesota is a perfect time to go for a walk….after all, you have to soak up all of the sun and “warm” weather you can get before winter hits.
Recently, I took advantage of one of these perfect autumn evenings and was out with my husband and children, doing just that: taking a walk and soaking up the best season in Minnesota. Out of the blue, my daughter (who was shuffling through the small piles of leaves in the sidewalk) took a deep breath in, exhaled, and announced in a quite nostalgic voice, “Mmmmmm…smells like buns on hot dogs…!”
While a part of my had a bit of a Nirvana flashback (Smells like Teen Spirit), and part of me thought, “Kid’s just say the darnedest things!”, most of me realized that my daughter has officially reached a new point of awareness regarding her celiac disease. I should have seen the signs…..
Just a few days earlier she had requested a bun on her hot dog for dinner….followed by a night where she dreamed about buns and bread on sandwiches. Yes….my daughter is starting to realize that most people eat hot dogs IN a bun, and bite into hamburgers IN a bun. So far, this hasn’t been a resentful sort of realization….I think she is just letting this anomaly roll around in her head a bit so far, but I am starting to worry. When will the innocent curiosity turn into bitter accusation??
As cute as her little statement was, it makes me realize that soon she might not be quite as cute about voicing her observations about being “different”. I knew this was inevitable…after all, she WILL be a teenager one day. I just didn’t expect to embark down this path so soon…I mean, she’s only in kindergarten!
We’ve been gluten free for over 3 years now. And although we bought GF buns in the early days, for the past couple of years, we’ve tended to keep a back-up pack of buns in the freezer only for company. What was the point of spending $1.50 on a bun that was dry and tasteless? In addition, since it wasn’t as soft, it was next to impossible for a little kid to actually take a bite out of something that was so much larger than her mouth. As for me, I shunned buns altogether. Not only because I am miserly about the amount of money I have to spend on GF stuff already (don’t get me started on the tiny loaves of bread!), but also (and I freely admit it) because I am holding a bitter grudge against all things that are not comparably reproduced in gluten-free formats. (apple-turnovers – I’m looking at you here!)
Of course, since my daughter’s declaration of affection for hot dog buns, my husband has made them a regular item on the grocery list. (I think he finds this to be a bit of a relief, for as much as he loathes hot dogs, I think he truly misses having a bun for them even more.)
Even in her phrasing, my daughter betrays her lack of understanding regarding buns. After all, to everyone else on the planet, they are “hot dog buns.” Right? It is such a common thing that I think it is the first time in my life that I have ever heard someone say “buns on hot dogs”, but it is exactly that: a reflection of the “other” upbringing we have to embark on with her that makes the otherwise commonplace seem exotically odd.
So, I guess this post is just an introspective foray into what the future might hold for my little celiac. Will her interest in eating things that are like what “normal” people are eating stay sweet? Or will it grow into some weird form of rebellion? Or will this experience serve as a unique educational moment that will allow her to see other things in life from a different perspective?
Or am I just over reacting to a 4-year old’s expression of affection for typical childhood food fare?
Perhaps I need to think outside the bun. That stupid, expensive, dry and tasteless bun…. which apparently has never before smelled as sweet.
While on the Twin Cities ROCK (Raising Our Celiac Kids) walk last month (sidenote: fun event, great food fair, fun raffle and silent auction prizes, and all for a good cause: celiac research – be sure to go next May!), our family was walking with another family (friends of ours), and we were talking about stuff, catching up on all the tidbits of news and whatnot from when we last saw each other. (we get together quite often, but still oddly find stuff to talk about.) You know, typical conversation with good friends.
Our friends were commenting on my blog, which is nice to know that they take the time to read, since they aren’t celiacs. I think the conversation shifted to talking about the mis-perception that we celiacs are “picky eaters”, when we started joking around about it. It was from this string of celiac-inappropriate comments that we came up with an idea: a counter-point blog to mine (its alter-ego, as it were)….it would be called “Take THAT, Celiac!”
So, as we are walking, our friend (Scott) and I start talking about the blog topics that would serve as counter-point (he said / she said) posts to mine. And in this determination, we decided that the posts would consist entirely of a photo of some gluten-laden food, with the caption, “Take THAT, Celiac!”
(the gluten equivalent of “So there!” or “Oh, yeah? Well, whatever!”) Imagine…a whole blog with each post consisting of nothing but a photo and an idiotic caption.
I found this idea to be endlessly amusing and although incredibly inappropriate, it was hilarious to think about.
And….surprisingly, I have found that it has helped, in a bizarrely unexpected way, in dealing with all of the yummy stuff I can no longer eat. Since that day, when confronted with pangs of nostalgia for deep fried whatever, or some delicious pastry, I visualize the perfect photo of it posted on a blog with the words, “Take THAT, Celiac!” below.
It makes me laugh from the sheer idiocy of it.
If anyone did that in reality, I would be kind-of hurt and probably offended, but the thought of it as an idiotic comeback to logic and reason, well, it amuses me.
So…in my ramblings today, I just wanted to share that sometimes celiac disease is just stupid, and the only cure for the stupidness of it all is to out-stupid it. I take celiac disease sooooo seriously in reality, it is fun to now and again have a laugh about the absurdity of the situation. (this could just be me and my quirky sense of humor…. but if you think it is funny, let me know, because for some reason, I think it is hilarious.)
I have started a “takeTHATceliac” blog: NOT to actually follow-through on the photo/caption idea, but to prevent someone from actually using it to be mean with.
If you think this is stupid-funny, let me know! If you think this is just plain stupid, well, feel free to share as well.
But if you find yourself walking through a store and spotting some yummy-looking, gluten-filled whatever, I want you to pause for a second and picture what the photo of that would look like on the blog…and then the caption “Take THAT, Celiac!” If the absurdity of it all doesn’t at least make you crack a smile, well…. your sense of humor is probably more refined than mine. 🙂
BUT, if it makes you start giggling, I want to hear about it.
So whadaya’ say? Ready to conquer the gluten-filled world? Take THAT, Celiac! 😀