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.