Posted in Celiac "Fun" Facts, Gluten-Free/Dairy-Free Life, Life Lessons, Newly-Diagnosed

10 Things I Wish People Knew About Life Without Gluten

A few hours ago, we said good-bye to April and hello to May, which is important for a variety of reasons. First, it means the relentless rain should cease and bring us those promised “May flowers”…and in light of just how many April “showers” we’ve had, it better be an abundance of blooming spring flowers. Second, in the world of teaching, May means the light is at the end of the tunnel. Summer is just a calendar page away…which of course brings with it immeasurable excitement alongside downright panic at the sheer amount of material left to cover/work to do before that page flips; however, today I choose to focus on the good. And third, it means Celiac Awareness Month is upon us. Now I know these days it seems like every cause under the sun has its own day, week, month, or even year and thus it’s easy to disregard such a distinction. And yes, it means very little change in my day-to-day life so it can easily slip right past. However, given the impact such a condition has had on my life, I choose to acknowledge it, celebrate it (if such a thing can be considered celebrating), and raise a little awareness of my own. So here it goes…

Now, I can’t promise you that I’ll post more often during the month of May. It’s my fervent hope and established goal that such a dream will come to fruition; but as I mentioned above, May in the teaching world is just one giant chaotic whirlwind of concerts, sacraments, end-of-year showcases, exams, field trips, graduations…and did I mention grading?? So I’ll see what I can do but please don’t hold me to it 🙂
So what better way to begin Celiac Awareness than a simple list? It’s one I’ve been subconsciously acquiring for 3 years now without even realizing it. I call it “10 Things I Wish People Knew About Living Without Gluten (forget all my other issues)”
1) I am not trendy.
For anyone who knows me, this is an obvious one. Trendy would probably be among the last on the list of possible adjectives to describe me. In fact, it’s pretty close to the top of the “couldn’t be more opposite than Katie” list. And I mean that. After all, the Goodwill is my clothing store of choice at the moment, enough said. One of my kids said it best today when she exclaimed, “Miss Burke, I think I’m an old person trapped in a young person’s body”. I laughed and told her I’ve been saying that for over a decade now (about myself, not her). And yet, there have been some articles popping up recently which deem celiac disease to be “The Trendy Disease for Rich White People”. Now, I’m sorry but the only adjective in that phrase which addresses me is white. I could not be further from rich or trendy…but I will completely own my freakishly pale, only-sunburns-and-never-once-tanned skin. And I would just love for the authors/”scientists” (I use that term loosely)/whomever is behind such articles to explain to me what exactly is trendy about barely living as you’re slowly destroying your intestines, spending innumerable hours in various medical offices/labs, and then living life as a borderline social pariah who obsesses over every piece of food, beverage, lip balm, and oral hygiene product that enters your body. Yes, sounds like the definition of trendy to me. I think someone needs a little gift from Merriam-Webster 🙂
2) I am not fragile.
Yes, as mentioned above, I do obsess a bit about everything I consume. That doesn’t mean I’m fragile or weak. Vigilant, yes. Resourceful at times, absolutely. Fragile? No. I am not going to break if you touch me. You will not magically become intolerant to life too because I run up to you and give you one of my overenthusiastic hugs. I will not self-implode because I walk into a room that has bread in it. Yes, I sincerely appreciate your caution. I love when people don’t cross-contaminate my dish with their spoon or my hummus with their cracker. I am grateful when people wash their hands after handling cookie dough because I’m around. However, I don’t need to be treated like “bubble girl”. I live with my reality every day. 24 hours a day, 7 days a week. Most of those hours are spent around children under 13. Trust me, I can handle quite a bit 🙂
3) Yes, I know what I’m missing.
I cannot tell you how many times I get asked, “But don’t you miss pizza??/How do you live without bagels??/What about Oreos??” Of course, I do. They’re delicious delicacies that much of the population enjoys without a second thought, except perhaps to consider its potential impact on their waistline, and they’re off-limits to me. I recently described it to a friend as living in a kind of perpetual Lent. There’s no Easter joy of “I can finally eat (insert Lenten sacrifice here) again!!” Though as an astute priest pointed out in his homily last weekend, if we’re doing Lent right, that shouldn’t be the case anyway. Regardless, you get the idea. Yes I know how many amazing foods are no longer on my radar. I also know how horrible the aftermath of such foods would be to my poor body so it’s pretty much a no-brainer. But that doesn’t mean I don’t have my moments…like Tuesday night when I was at the mall and caught a whiff of that distinctive Auntie Anne’s scent. I swear there must be something addictive in those things. In short, yes, I do know what I’m missing and what I’ve lost…but I also know what I’ve gained since my ill, not-quite-a-real-person-anymore days.
4) I hate being introduced as “the girl who is allergic to everything”
You know what they say about first impressions? How you don’t get a 2nd chance to make one? Well, imagine that’s your most frequent introduction. It’s simply human nature for fascinating facts to stick in our minds and so suddenly I’m remembered as the girl who can’t eat anything. I can’t refute: it is fascinating. It boggles my mind sometimes when I think about it. However, there is so much more to my life that I would argue is just as fascinating. And no one would ever introduce me as “the Spelling Bee girl”,  “the girl who decided to pursue two different degrees in college” or “the girl who has taught 6 different grade levels in 6 years of teaching”…so why should my first impression be defined by a food issue that is beyond my control? Yes, it will come up eventually…but it doesn’t define who I am.
5) I miss when grocery shopping was simple.
I LOVE grocery shopping. I always have. However, sometimes as I steer my cart around the perimeter of the grocery store, I miss the days when I could explore the aisles in the middle. I miss when I could notice a new product and grab it off the shelf to try. I miss when I could just choose a sale item and place it in my cart without having to scrutinize the label. I miss having a place I could call my grocery store. Growing up in PA, ours was ShopRite. It was the one store we went to and we only went once a week. You knew once the cookies were gone or your favorite flavor of Pringles was devoured, you were going without until the next week. These days I have about 4 different grocery stores I have to frequent because a “regular” grocery store doesn’t have everything I need. And then even the natural/organic stores all carry different products that I use…so grocery shopping is no longer routine, logical, or methodical. As I drove between stores last Sunday, I reminisced about the days when grocery shopping was a less-than-an-hour event. (Last week took 2.5 with travel time included). It’s not all bad though…I do get to compare 4 different “grocery store radio mixes” of songs from my middle school years. If that doesn’t make your Sunday complete, nothing will.
6) I miss when eating on the run was simple (or even possible).
Some of my favorite memories from childhood involve the nights when one of us had a major life event on a weeknight: Confirmations, Distinguished Award banquets, a championship basketball game, Opening Night of the school music, etc. They were my favorites for many reasons but one major perk was that it usually involved stopping for pizza, Boston Market, or some other quick dinner that we normally didn’t get to enjoy, especially on a weeknight. I still have crazy nights like these as an adult, only now it’s usually because I’m running to such events for my students…but on more than one occasion I’ve longed for the days when I could just run to the Chick-Fila drive-thu or participate in my school’s “place your order for a sub and have your dinner taken care of” plan. Unfortunately, life without gluten means always planning ahead. Like tonight when I have to be at school until 9 to celebrate a year of STEM-related accomplishments, I can’t just grab a quick bite and run back. I have to plan, cook ahead of time, and leave in the morning with not one meal in my lunchbox, but two. Again, on the plus side, it probably means my heart is healthier these days since I can’t eat fast food…but still, some days I really miss it.
7) Life is expensive. And I mean absurdly so.
I’ve referred to this in other posts so I won’t dwell on it. But life without gluten is expensive. No 10 for $10 pasta for us. No 99 cent loaves of Wonder Bread. And moreso than that: almost no generic brands of ANYTHING (save for Wegman’s…God bless Wegman’s :-)) On top of that, there really is no such thing as a free meal. I often think about that when I’m at a conference where lunch is provided or a celebratory event which involves appetizers and dinner. For many people, those are gifts: a night of no cooking and cost-free delicacies they’d never make for themselves. For me, it just means another night to cook, eat ahead of time, and repeatedly decline offers of food people insist is safe for me. I’ve learned such social gatherings are not the place to explain the whole shared cutting board, shared pots and pans situation. If I do, #4 becomes a reality. So in short, there is no way around it: Life is expensive. Even for a frugal, coupon-clipping girl like me.
8) Being “gluten sick” is miserable. Being real sick is downright scary.
There are no words to describe how miserable I feel if I eat gluten. And by that I mean something contaminated by gluten…because I can’t even imagine how bad it would be if I actually ate a bagel or piece of bread. I won’t go into explicit detail because I did in a post awhile back…but all I will say is the phrase “power through” cannot be applied to being “gluten sick”. I am not someone who let sinus infections or headaches stop me in my tracks. But gluten? Well, I literally cannot get off the couch. And I mean that in all sincerity. Also, I’m not a nice person if it happens. Consider yourself warned 🙂  And “normal” sickness (i.e. sinus infections, ear infections, etc.)? They’re not just annoying, they’re frightening. Partially because trying to find safe medication has the challenge of an Olympic event but also because there is always the fear of the treatment making you feel worse and your poor, confused, already-in-overdrive immune system attacking the wrong thing.
9) Going to the dentist is stressful. (And I LOVED going to the dentist.)
I am rare in that I love the dentist. I love seeing my 6-month cleaning on my calendar. Well, I should say loved. Past tense. There are two reasons for this. First, celiac is associated with dental issues. Granted this is only the case when you’re consuming gluten…but once the damage is done, it’s not like the absence of gluten in your system magically refills the cavities or replaces the enamel you lost during the years when you didn’t know what was wrong. So me, the girl who prided herself on a lack of cavities, now has lost track of how many fillings I have. Somehow every time I go, they find something new that needs to be fixed. And that brings me to reason 2 to be stressed. Everything about dental work involves your mouth. So even though you don’t want to think about how much of that stuff makes it’s way into your intestinal tract, I can tell you it does. (Remember, not just during the procedure but when you eat or drink immediately after). I had a procedure done early in my gluten-free days and didn’t think to tell my dentist. Since most adhesives (even Elmer’s glue) contain gluten ingredients, so do many pastes used in dental work. I was confined to the couch for two days, sick as could be while also dealing with a throbbing mouth. It was enough to counteract 24 years of positive dental experiences. I  now dread the dentist.
10) Life without gluten is a full and beautiful one.
I know the first 9 items on this list seem like downers, and that was not at all my intent. I just figure Celiac Awareness Month means people should be made aware of some harsh realities of a world without gluten. However, that being said, no one should feel sorry for us. Everyone in this life has certain burdens and crosses they have to bear. Yes, gluten is one of mine but in the grand scheme of life, that’s a small one. I am happy and I am healthy. It’s a treatable condition. It’s not a condition that involves a long, painful treatment regimen. No, it will never go away…but if I can be healthy just by altering my diet, then I am far luckier than many people in this world. And on top of that, I’ve been introduced to a wonderful community. The gluten-free community (and I mean the real one, not the bandwagon GF friends) is one of the most positive, helpful ones I’ve encountered. People who don’t even know you just want to help. I’ve had fascinating discussions with so many people I never would have known otherwise. We’re happy, we’re loving life, and we’re the farthest thing from sad or pathetic.
So there you have it…Day 1 of raising awareness. Have a great May 1st and be on the lookout for more awareness over the next 31 days 🙂

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