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! 😀
I got a lot of great feedback about this post, and it seems especially timely, so I am re-posting it.
When I was first diagnosed with celiac disease, the first person I got to meet face-to-face about it was an authoritative RN. Prior to this, I had heard over the phone from my OB (I was pregnant at the time) that my blood tests said I had celiac, I had been hauled in to have my biopsy a couple of months later (after having my baby), and now was all prepared for the official “Yep, you have it.” moment. It wasn’t a shock to me by this point, since I had known about it since that first phone call, and I had already decided to go GF and stick to it, not only for my health, but because it would make it easier on my daughter (also celiac) if she wasn’t the only one in our house who HAD to do this.
But back to the RN….she was not one…
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This post is an ode to one of the worst tasting pizzas I have ever had. A celebratory tribute, one might say.
Last weekend, amidst the whole Domino’s “not-really-gluten-free ‘gluten-free’ pizza” debacle, I decided to make a statement with my dollars by purchasing some gluten free pizzas from another national chain which had quietly rolled out a line of GF pizzas: Chuck E. Cheese’s.
My daughter (one of the 2 celiacs in the family) has been to Chuck E. Cheese’s before….although we have either arrived after the birthday party has eaten their food, or I have brought a bag lunch for her to eat, and a home-made cupcake for her to eat while the rest of the birthday party-goers ingest greasy pizza and cake. Needless to say, the full Chuck E. Cheese experience was not something I ever expected my daughter to experience. (sometimes she asks when she will be allowed to have gluten…like we are punishing her or something, or that she will out-grow it….we try to explain that she never will be able to have it, but the concept of a LIFETIME of no gluten is a bit hard to comprehend for a 4-year old.)
So, we called up some friends (not celiacs) and made a playdate for Chuck E. Cheese’s. We got there, the kids ran around playing games with the oodles of tokens we purchased while we waited for the food to be made. Then the moment of truth: our pizzas were up.
(At this point, I should explain that the pizzas at Chuck E. Cheese are a bit larger than a personal pan pizza and are around $6. In addition, we ordered 2 of them, but everyone else at our table had a large pizza chock-full of gluteny-goodness.)
Let me say this: I was impressed.
Was I impressed by the extremely knowledgeable server who brought our pizzas to the table? Heck, no. Aside from looking like she was 14, she seemed pretty clueless as to what a gluten free pizza was.
Was I impressed by the amazing deliciousness of the GF cheese pizza? No…it tasted like crappy frozen-pizza from back when I could eat gluten…you know the kind – the brand you avoided buying even if it was on sale when you were in college?? Yeah. That one.
Normally the combination of these 2 factors would be a 100% guarantee that we would never eat at a restaurant again, HOWEVER, in this instance, I was extremely impressed BECAUSE…..
The clueless server didn’t matter. Somehow in the chaos of running a pandemonium-laden kid’s restaurant, the management at Chuck E. Cheese figured out a way to idiot-proof their gluten-free experience. That is right. Clueless server? Didn’t matter. Conditions in the kitchen? Not an issue. Our pizza arrived at the restaurant individually wrapped in a bake-able bag that it is cooked in, left sealed in, and delivered directly to our table in. No one who actually works in the restaurant actually touches any portion of my pizza other than the outside of the sealed bag. In addition, they come with an individually-wrapped pizza cutter that remains sealed, as well, and has the words “Gluten Free” printed in the handle. That’s right: it comes with its own cutter that you can either dispose of afterward, or take home for your kid to use with Soy-Yer Dough at playtime.
Ahhh….but back to the taste. Okay, I did exaggerate a little bit earlier. Back before my diagnosis I had tasted some pretty awful pizzas, and this really wasn’t the worst of them. Would I ever expect this pizza to win taste-tests though? No. It wasn’t great. But you know what? It wasn’t bad, either. It was mediocre.
But let’s face it, I wasn’t there for the fine dining experience. And it is for THIS reason that I give this pizza a 5-star rating. By creating this process, Chuck E. Cheese created an opportunity for my daughter to not only have her own party at Chuck E. Cheese some day, but to be able to attend other kid’s birthday parties and have pizza (nice and warm) brought to the table with theirs. She will be able to pretend that she is a normal kid like everyone else at the party. Heck, I would have eaten it even if it tasted like cardboard with melted cheese on top, and probably so would she, so I can say that in comparison, it does outshine cardboard. 🙂
And for dessert? They have individually-wrapped, GF chocolate cupcakes, as well. (Incidentally, these appear to be somewhat healthy (well, as healthy as a cupcake can be, really), as they are flavored and sweetened naturally, but I digress.)
She can take part in the complete Chuck E. Cheese experience. And I LOVE that she can do that. I love that there is a place where she can pretty much be a “normal” kid and for one aspect of her childhood social life, she doesn’t have to sit on the sidelines.
And for THAT, I love the pizza at Chuck E. Cheese’s. Who would have thought that I’d ever be promoting a bland, frozen pizza as the best dining experience in town? But here I am. Doing just that. So, GO TO CHUCK E. CHEESE’S: if you have / know celiac kids, I think you’ll be asking yourself the same question soon. And you’ll be happy to do so!
Oh! And my 4-year old? She thought the pizza was great. So it looks like the higher-ups at Chuck E. Cheese have their clientele figured out pretty well…. So I’d say this GF pizza is worth all of the game tokens in the world.
Happy Celiac Disease Awareness Month!
Incidentally, as I was pondering how to commemorate this month on this blog, an interesting thing happened.
Okay, it wasn’t earth-shatteringly interesting, but it really sums up how I am feeling about my status as a gluten-free person at the moment.
See, this past Saturday, I was really procrastinating about deciding what to make for lunch, when suddenly lunch time was right around the corner, and I had 2 kids who were already whining about being hungry. (Point of information: Lunch is my gig, as my husband is usually in charge of breakfast on the weekends.) So, I browsed through our pantry and freezer and AHA! I found a frozen pizza crust that I had made a couple of months ago.
I should preface this by adding that I am a halfsy-sort of cook. I make stuff, but not usually 100% from scratch. In this instance, I used a Pamela’s bread crust mix to make pizza crust in my breadmaker. We usually add cheese and seasonings, but I can’t really claim that I did it from scratch. Anyway, one batch can make a LOT of pizza crusts. I roll them out between 2 sheets of parchment paper, stack them on a cookie sheet, and toss them in the freezer. Then I can just grab a frozen disc-o-crust at my leisure, peel off the top piece of parchment paper, and viola! Ready to pile toppings on and bake.
But, back to last Saturday:
So, I get all clever and think, “Hey! What if I pre-bake the crust a little, see if I can make it a little more crispy?” So I toss it in the oven while I start getting toppings ready. I peek in after the buzzer goes off, still not done, so I add 4 more minutes. Why 4? I don’t know. What I DO KNOW now is that it was probably 3 minutes too many.
When the buzzer went off, I realized that I had, um….almost burned it. It wasn’t black or even dark brown, but it was pretty crisp….to crisp to put toppings on and then shove back into the oven, that’s for sure. So, I quickly switched gears and hauled out some bread I recently ordered from Happy Campers Bakery (a GF bakery in Oregon – they ship to Minnesota!). I quickly coated the slices in sauce and cheese, arranged some mini-pepperonis into smiley-faces, and shoved a half-dozen of them into the oven (which was already pre-heated due to my crust debacle.)
My kids ate lunch and were none the wiser. Thankfully they enjoyed the smiley-face mini-pizzas…. And I was THIS CLOSE (imagine my thumb and finger pinching about 1/16th of an inch apart) to chucking my “crispy crust” to the squirrels in the backyard when it occurred to me that I should wait.
So I did. I looked at it, and then (warning: stroke of genius ahead!), I broke the mega-crust into small pieces and put them in a tupperware container. When we had a friend over for dinner that night, I decided to haul out that container-o-pieces and some cheese dip and give it a whirl as crackers. And you know what??? That made pretty darn good crackers. Even our friend (who does not have to eat gluten free food) liked them.
Okay, back to the whole point of this post: So, in the midst of congratulating myself for cleverly salvaging my crust and somehow stumbling on a pretty good cracker recipe, it occurred to me: I would NEVER have come up with that had I not had celiac disease.
Seriously. I never even USED my bread maker before we went GF. I certainly never used it to make pizza crust. And it never would have even been a thought to try out the crispy crust of a failed pizza as a cracker alternative.
Now, I’m not saying that homemade crackers are worth getting celiac disease or anything, but I am aware that I am experiencing new things that I never would have even thought of before. It was kind of fun to discover new things that I KNOW I wouldn’t have even bothered to do before. So, in that respect I have to say that going gluten free has actually added a new dimension to my life experience.
So, this month, I have decided to honor Celiac Disease Awareness Month by being positive and grateful for some of the oddities that I have encountered through my gluten-free existence.
Because you know…celiac disease bites, but when life gives you lemons, sometimes you’ve just got to make crackers…!