Posted in Celiac "Fun" Facts, Newly-Diagnosed

3 Years and Counting…

Today marks the anniversary of one of the longest-running relationships I have to my name: Katie and Celiac. Yes, on this date back in 2011, I watched hours of Gilmore Girls in a waiting room with the Saint in a Sundress before they wheeled me in for the procedure that would finally yield an answer to my mystery symptoms. I still remember waking up from my anesthesia-induced nap with a scratchy throat, some high-definition photos of my poor eroded intestines, and a new lease on life. Granted, the official confirmation didn’t come until a few days later when I fielded the phone call from my doctor en route to see the final installment of the Harry Potter series. I’ll be honest, it remains one of the more surreal evenings of my life: seated in a sold-out movie theater, surrounded by kids (and some adults too) dressed in their finest wizarding garb, watching the end of an era in fictional entertainment while my brain tried to process the end of an era in my own life too.

Well, here we are three years later and my life has certainly gone on. And fittingly, we learned this week the same can be said for Harry and the gang. (Those of you who are not diehard Potter fans/Pottermore subscribers like myself, you may have missed this) Harry is going gray and I now have a litany of additional food restrictions but regardless, life goes on.

So why celebrate the anniversary of a not-so-happy occasion?? Well, aside from my obsession with calendars, I truly believe in commemorating such milestones because it’s not so much the actual day which you’re celebrating, but rather all the time and growth that has taken place during the time that has since passed. Consider work, relationship, or even wedding anniversaries: is it really that one day back when it all started that you’re celebrating? I sure hope not. All you did that one day was put on a nice suit or expensive dress, drive somewhere new, and then start a new job/meet a new person/pledge your life to someone/whatever the case may be. Yes it was a day which was slightly out of the ordinary and yes it was one which could forever change the trajectory of your life. However, if the next morning you went back to your old routine and didn’t change a single thing moving forward, well then is that “landmark” day really still worth celebrating?? No, in my mind the point of an anniversary is to acknowledge the journey between a given point and where you are, and that means all the changes, adventures, mountains, and valleys you confronted along the way. Hence in my book, anniversaries, friend-iversaries, Baltimore-iversaries, and yes, even Celiac-iversaries, are worth celebrating.

My 1st Celiac-iversary: Gluten-free cake and cider πŸ™‚

So, on that note, how does one celebrate a Celiac-iversary?? Well, this year for me it means white rice. And lots of it. As luck would have it, some specks of cheese snuck into my otherwise Katie-safe salad yesterday (I won’t call out the establishment because I’ve never had a problem with them before…and it’s my own fault for not inspecting it before I bit in) and though I only had a few bites before noticing, the damage was done and my stomach and I are not on the best of terms. So, white rice it is. Second, I figure why not celebrate with a list of interesting facts about Celiac…some of my own choosing and some in response to the questions which I am most frequently fielding from others.

1) Yes, I was born with Celiac. Well, sort of. I get this question in a variety of forms all the time. (“Wait, this just happened to you one day?”, “Could you ever eat gluten?”, “Have you ever eaten a piece of bread?”) The answer is a confusing one. As far as research has shown, those with Celiac have the gene from birth. For whatever reason, the gene is activated at some point in a person’s lifetime, while it remains dormant for others who have the gene. So, in short, yes I was born with it but I lived in blissful ignorance until 3 years ago…well really 4 because the year leading up to that was not blissful, more like mysterious confusion. And as for the traumatic event which triggered it in my case? I still blame the dogbite incident of 2010. Though I’ll never know for sure, I think the fact that my symptoms started just 2 weeks after that fateful day is too questionable to chalk up to coincidence. And that, my friends, is also why I am not, and most likely never will be, a dog person.

    2) Celiac is most common among Caucasian women of European descent. Yep, that’s true.This very pale 100% Irish girl fits the bill entirely. I do still love my heritage though. Nothing like a cup of Barry’s tea, a fiddle tune on the violin, and a new patch of freckles despite the frequent application of SPF 75 sunscreen. And at least it also explains my unnatural obsession with all things potato πŸ™‚

      3) I need to move to Italy. Like for real. I was fortunate enough to go to Rome at Christmastime in 2012 (and see Pope Benedict in his final weeks before stepping down!) and let me tell you, it was a dream come true. For many reasons of course, but a major one was that in every restaurant all I had to say was “senza glutine” or “un celiaco” and everyone knew what it meant, what I could eat, and how to keep me safe. And, hold your breath, it gets even better! Every Italian is tested for Celiac before his or her 6th birthday, every Italian over the age of 10 with a Celiac diagnosis receives a stipend each month (worth roughly 140 Euro) to cover the excess cost of their gluten-free food AND they even get additional “sick” time at most jobs to allow for gluten-free food preparation!! I was floored. Don’t believe it, it’s all here.So who is with me?? Italia, here we come πŸ™‚

      Amazing gluten-free dish in Vatican City!
       4) There is a mouse with Celiac Disease. And what’s worse? They gave it to him. There’s a reason I called this list interesting facts and not fun facts. It feels wrong to describe a mouse inflicted with Celiac as a fun fact. Researchers at the University of Chicago Center for Celiac Research designed a study which involved inflicting a mouse (well, I’m guessing it’s many mice) with Celiac so that testing can be done to develop a treatment. They claim by 2026 it will happen. I’m not holding my breath…


      I’d never have pictures
      like this if it weren’t
      for celiac hahaha
      5) I don’t hate Celiac. I know, shocking right? I’ve actually spent more time thinking about this than I care to admit. Now, don’t get me wrong, I don’t love it either. However, I think there is just a little too much hate in the world to add any more. Plus, would my hatred toward it do anything to change it or eradicate it? Nope. So I say hating it would just let it win. Not to mention, whether I like it or not, it certainly did change the trajectory of my life. It’s made it more challenging to be sure, but it’s also opened my eyes to a world of knowledge, support, and love which I would have never experienced otherwise. It has become such an all-encompassing part of my life that I can’t really imagine my life without it anymore. Sometimes I really do wonder what I could be doing with all that excess brainspace which is now occupied by gluten-related knowledge, recipes, doctor appointment reminders, etc. Or what I could be accomplishing in the hours I spend cooking and baking from scratch, driving between 3 different grocery stores, and researching new establishments and updates on the internet. Maybe I could have cracked the code on the Beale ciphers and be rich by now. Alas, the world will never know…

        Yes, I’d say in the 3 years since Celiac and I have been acquainted, we’ve learned to co-exist pretty well. I mean aside from the fact that it occasionally derails my plans (like this weekend for example). It’s been a crazy 3 years for sure and I have no doubt there’s more craziness, tears, and frustration ahead but for today, I choose to focus on how far I’ve come and how I’ve managed to find joy, laughter, and fulfillment in spite of my pesky life companion πŸ™‚
        If I had never joined Team Gluten-Free,
        my life would be drastically different:
        I mean, I never would have discovered Sweet Freedom.
        3 years down, forever to go…going strong πŸ™‚
        Posted in Celiac "Fun" Facts

        Oh Sugar, Sugar…

        (Click here if you want the background music)

        So Celiac Awareness Month is now 2/3 finished and I have yet to do much in the way of awareness. If only there could just be a few more hours in the day. Regardless, there is an important reality of celiac I’ve been meaning to address for awhile now…so I suppose today is as good a day as any. Celiac disease is an autoimmune disorder. Yes, you probably already knew that. However, what you may not know is that if you have an autoimmune condition and it remains untreated, they often act like dominos…and before you know it you have plenty of them. I mean it makes sense when you think about it: if my immune system is going haywire, why would it just isolate itself to one body system?? Clearly my body learned the “sharing is caring” lesson a little too well when I was a kid.

        So rewind 3 years: it’s spring of 2011. I was in the heart of my “we don’t know what’s wrong with you” dark days. I had been to every doctor under the sun, or so it seemed. I had a primary care doctor, a cardiologist, an endocrinologist, a neurologist, and a nutritionist; and yet between them all, no one could figure out what was going on. It was like a fast-paced game of “Hot Potato”…and I was the spud. A sickly, limp one at that. Finally, it was discovered that my frequent dizziness and pale, clammy skin was related to when I was eating and what seemed like an impossible amount of bloodwork finally provided a clue: insulin. My body was making WAY too much. 3 times too much to be exact. So any time I ate sugar, even natural sugar like an apple, my blood sugar was crashing, not necessarily too low but just too quickly for my poor body to catch up. Each doctor posed a different theory about what might be responsible for this (though honestly, they just seemed way too excited for my liking about finding something amiss). Next thing I knew, I was heading in for ultrasounds and the word “insulinoma” was bouncing around.

        Now, I know many current/future doctors; my one plea to you: please, please, please don’t just toss around words like that to your patients because their symptoms fit the bill. I know, you’ve spent way too many hours in a lab or buried in a book reading about conditions such as these, and you’re beyond excited to see it in real life…but then there are poor, frightened girls like me who end up huddled under a blanket on their apartment building rooftop googling “insulinoma” and looking out over the Baltimore skyline through tear-filled eyes. (And for those of you thinking the worst, my apartment had a rooftop deck…I was safely seated in my bucket chair, I just loved going up there at night to find peace and wait for Natty Boh to wink at me a few dozen times before bed.)

        Photo Courtesy of http://www.baltimorefotos.com/
        Fortunately, as you can probably guess, an insulin-producing tumor was not the cause of my maladies. However, the endoscopy to rule out this culprit was the reason they inadvertently found my intestinal lesions (typical of celiac disease) so really it was a blessing in disguise. So what was it then? Am I telling you that celiac also means avoiding sugar?? No, of course not. My untreated autoimmune condition had triggered another. My immune system was attacking my own insulin; hence my body kept thinking it had to make more…and before my poor cells knew what hit them, it was hyperinsulinemic hypoglycemia. AKA, I was passing out/scavenging for the nearest quick-sugar-fix. Bad news. The good news was that once they realized it was all autoimmune-related, I was told the insulin issues would fix themselves once I stopped ingesting gluten and my immune system had calmed down. Fortunately that proved true…but not before I was the reluctant recipient of a blood sugar monitor, a valuable lesson from the Allergy Angel who taught next door (who also happens to be a Glucometer Guru), and several subsequent months of 5-times-a-day-finger-prick testing. Diabetics of the world, my utmost respect to you. I admire you more than you know.

        In time, my blood sugar levels stabilized and life got back to a new normal. However, as you’ve probably realized by now, gluten was not the last of my triggers. So with each new food issue came a resurgence of my blood sugar problems (not as severe as that first time, thank goodness) and each time they resolved themselves when the trigger was eliminated. That is, until recently. Last fall I returned for my annual 3-hour Glucose Tolerance Test (yes that one with the orange sugary drink that every pregnant woman I know dreads/complains about for weeks afterward). I get to have one every single year. And each year for the past 3 years, my levels would gradually get higher…and I think the great casein, soy, corn debacle of 2013 proved to be too much for my poor cells. So now, aside from avoiding gluten, dairy, soy, and corn, I also have to try to eat foods with a low glycemic index. (I know…just when you think it can’t get crazier, right??) And because of my most recent bloodwork, I now get to add a daily insulin-sensitizing medication to my bedtime routine. I’m just grateful I don’t have to do the finger pricking much anymore.  That and the childhood summer I spent countless hours downing M&M minis with water in my determined attempt to learn how to swallow pills (a skill I don’t think I mastered until around the time I learned to drive).

        My low-glycemic-index team πŸ™‚

        So why am I telling you this story?? To say sugar is the enemy?? Of course not. It’s because this is Celiac Awareness Month and whether we want to admit it, Celiac is not a harmless condition. It’s quite harmful. And that doesn’t even begin to address the subsequent issues which can come your way if you choose to ignore it. (Though I simply cannot wrap my head around how someone could manage that.) If you know something is wrong with you and your army of doctors keeps passing you off to a comrade insisting nothing is wrong (at least within their specialty), don’t give up and don’t surrender. It may take much longer than you, or anyone, would like…but getting to the root of your symptoms is imperative. And just because insulin was my issue doesn’t mean it’s the same for everyone else. For many it’s thyroid or some other endocrine-related gland.

        So Celiac Awareness Lesson of the Week: it is so much more than a stomachache. For some reason, people assume gluten consumption = stomach pain, maybe throwing up, and that’s it. Nope, in fact part of me wishes that were the case. The effects are lingering and can be devastating. So keep supporting the Celiac friends in your life in their quest to stay healthy. And if that Celiac friend is you? Well, stay strong in the battle my friend. It may be frustrating, frightening, and exhausting at times; but take it from the 2011 version of me fighting back tears on a Baltimore rooftop: healthy is a much happier place to be, no matter how long it takes to get there πŸ™‚

        Mr. Boh and I…much happier than in 2011 πŸ™‚
        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 πŸ™‚
        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 πŸ™‚
        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 πŸ™‚
        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 πŸ™‚  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 πŸ™‚