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The Million-Dollar Question…

“But what happens if you just cheat?” 
I’d say that question has officially been added to my  “If I only had $1 for every time I was asked this question, I wouldn’t have to work 3 jobs to get by…” list. (I’ll leave you to guess what the other 2 questions are on that list!) One of my caring students I mentioned in my Christmas post posed the question: “Miss Burke, what if on Christmas you just said ‘Oh forget it’ and ate a bagel?”
Yes, I know it’s a hard concept to understand why this would never even enter my mind as within the realm of possibility. I know why non-celiacs don’t get it. I mean if someone has an anaphylactic allergy, the answer is obvious. No one questions someone with a nut allergy…clearly staying alive is reason enough to avoid them. But what about those of us with the autoimmune food illnesses? We’re all too often misunderstood and confusion-inducing. And though that at times can be infuriating, I also can say I’ve reached a point where I’m empathetic enough to understand. It’s because there is no one answer. There is no single reaction that is the same across the board for all celiac sufferers…or food-intolerant friends.  Most of all, it’s because there is no way you can possibly imagine how it feels unless you’ve lived it…and once you have, there is no way you can possibly imagine ever bringing that upon yourself. So today I’ll do my best to answer the question I’ve mostly shrugged off or eluded until now. And I’ll do it in the least graphic way  I can 🙂
As I mentioned earlier, every celiac sufferer has a different reaction. Some do just have a strictly gastrointestinal reaction…but contrary to popular belief, that percentage is small. I certainly do not fall in that category. I’ll even admit that if I knew all that would happen if I ate gluten would be a day spent in the bathroom, I might be tempted once in awhile too. But it’s so much worse than that. I will say there are have been 4 distinct times since my diagnosis when I was “glutened” so severely that it resulted in 30 minutes or so of me face-to-face with the toilet bowl. (I should point out 3 of those 4 times were at restaurants with gluten-free menus…you see why eating out can be anxiety-inducing!) And trust me, it was beyond unpleasant…if you’ve ever had that kind of flu where it seems your stomach is squeezing itself completely dry of any substance you had in it, well that gives you an idea of how this is. Effective I suppose in ridding my body of what it deems to be poison. And, crazy as it sounds, I think if I had to choose a reaction, this would be my first-choice…because the muscular ache in my stomach that lasts a few days and the accompanying tiredness is nothing compared to what happens when those gluten or casein proteins have an opportunity to stick around in my body and wreak havoc for days on end.
Yes, I’d almost argue that those trace amounts of gluten, casein, etc. which find their way into my digestive tract are far worse than an outright piece of bread. It’s not enough to elicit a violent denial from my stomach…but more than enough to send me spiraling into a world I wouldn’t wish on anyone.
  •  First, there’s the tiredness. I wish there were another word for it though…because it’s not like any “tired” I’ve ever felt otherwise. It’s not the kind of tired you can power through or wage war against with caffeine or cold air. It’s a kind of exhaustion where you simply have to admit defeat. It seems physically impossible to sit up, let alone try to function as a human being. In the spring of 2010 (before my mystery symptoms were figured out), my principal literally found me asleep in our faculty room. And I didn’t even hear him come in. I’m not one who typically can nap anywhere but a bed or couch…but that spring, a hard round tabletop to rest my head was all I needed. I couldn’t make it through a day of teaching on my feet either. The stool became my lifeline…and sitting on the floor with my 2nd graders was no longer a behavior management tool but rather a survival mechanism.
  • Second, there’s the numbness and tingling. Of course now I know the clinical term: neuropathy. That’s right…just a little of one of those proteins and a day or two of phantom-feeling limbs is nearly guaranteed. Granted, it’s more manageable when you know what it is and what is causing it; when I didn’t, well terrifying doesn’t begin to describe that feeling. In fact that was the symptom which sent me to my first ER visit in 2010. When you’re a 24-year-old with a family history of brain tumors and suddenly you can’t feel your arm while teaching your 2nd graders, that’s cause for enough alarm to send an ambulance. And so it began…
  • Third, there’s the stomach “issues”. I don’t want to just refer to it as pain because everytime it’s different. Sometimes it’s downright pain, other times it’s puffiness and swelling, other times it’s  burning which results in acid reflux moreso than stomach discomfort. Whatever the form, the pain lingers…sometimes for a few days, sometimes more than a week…and it only worsens when you eat. Yet at the same time I feel like I’m STARVING…because I haven’t digested the food I ate that contained the culprit. Talk about your Catch-22…
  • Fourth, and to me probably the worst, are the mental symptoms. I know it sounds crazy but it’s true. Some experts call it brain fog, some call it gluten-brain, I call it downright misery. I literally feel like I’m losing my mind. And if my experience is even a fraction of what a mental illness feels like, I find it completely unacceptable that, as a society, we aren’t doing more to address it.  I feel anxious about things I know shouldn’t be worrisome. It’s like one side of my brain is talking to the other but neither one is listening. I feel sad…and again I wish there were another word for it because it’s more than that. It’s a feeling of despair and hopelessness, a sense that although this has happened before, that nothing will ever be all right with the world again. Sometimes I even cry. And for anyone who knows me well, tears and I are not things which have ever coexisted often. Other times I feel angry (another emotion with which I’m not well acquainted). I have a short temper and I want to snap at anyone or anything in my path. Again, not attributes most people would typically associate with my personality. And I’m still self-aware enough to know that too which makes it all the more frustrating. Vicious cycle…
  • Last but not least, there are the physical manifestations. Imagine your worst seasonal allergy symptoms magnified by 1000. My nasal passages start dripping, my throat starts to react, sometimes I break out in hives and other less than pleasant skin reactions. And that’s just the physical reactions visible to the naked eye. The thing about autoimmune disorders is that once you have one, they snowball if left untreated. Hence by the time I was diagnosed I had already developed a blood sugar problem caused by my body attacking my own insulin and I was borderline Hashimoto’s (a thyroid-related autoimmune condition)…which I still have to be tested for every 6 months. Unseen inflammation inside is wreaking more havoc than the symptoms on the outside for sure….
Since a picture is worth a 1000 words, this is me in June 2011…
    …barely making it through my brother’s graduation.
This is me in July 2011 (just 3.5 weeks later!) feeling alive and dancing the night away at a good friend’s wedding.
What a difference gluten makes…
SO in answer to the question: Why don’t I “cheat”? Well, after reading all that, would you really want to knowingly inflict that on yourself?
…Because I know what it feels like to reach the end of your rope…to be told it’s all in your head and that you’re crazy when you know that’s just not true…and to find your way back again.
…Because I know what it’s like to look at other 20-somethings in envy because they can do normal things like wake up, drive to work, go to the gym, and go out to dinner all in one day!
…Because I appreciate how good it feels to wake up with a clear head, proper balance, and a enthusiastic outlook on life.
…Because I watched the man I loved most in this world battle illness for 5 years. I’ll never know for sure if his maladies had any relationship to celiac, though my doctor remains adamant that there must have been.
…Because I had to say good-bye to that same man much too soon; but before I did, he taught me that you do whatever you can to add years to your life…but more importantly, to add life to your years.

So in answer to that student’s question: Why don’t I say “Just forget it”? 
Because I already lost more than a year of my life to gluten and if I can help it, it’s not stealing a single second more… 🙂

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