Oh 2014, you've really been kicking my ass. This was supposed to be one of the best years of my life: moving to one of the greatest cities in the world, exploring amazing restaurants and creating a new life in an exciting new place. But instead, almost every aspect of our move was disastrous, not to mention the construction crew continually trying to extort all this money we didn't owe (we rent, by the way). Then there was the whole tax mix-up where we were left to live on a fraction of what we were used to for months while it got sorted out. Then, there's been my health. While my overall well-being has felt rather lacking for a while, it was this year that it really kicked me to the curb. It put on gloves and smacked me straight in the kisser. Repeatedly.
Where I last left off, publicly-speaking, was that after my stint in the hospital a few months ago, my health seemed to be improving and I appeared to be getting stronger. Gastritis was the answer and I was on medication to help this condition. Only, it seems when I finally got confident that I was well down the road to recovery, I unexpectedly got booted back to start. Do not pass 'Go'. Do not collect $200. I just steadily started to decline again into fatigue, constant hunger and a strange haze in my brain that made it hard to think clearly. All this despite my medication and twice-a-day iron supplements. When I got scarily close to being sick and passing out immediately after having a burger, a beer and my favorite ice-cream-cookie sandwich (gluten, gluten, and hmm, more gluten), I knew something was still seriously wrong. After another trip for tests with my regular doctor and a last ditch HIV-test on her part to explain my puzzling declining health - which was, unsurprisingly, negative - I was sent to see yet another specialist. In the waiting room, I remained skeptical. I had already been looked over by no less than five doctors since this all began and each one ticked their boxes of questions to ask, always ending with the same quizzical look and a head shake. No idea. If one more doctor should ask if I like meat again, as if I was some secret burgeoning vegetarian, I might just scream.
But as soon as we sat down in his office and started going over my symptoms, I saw that he thought differently than other doctors. Instead of merely going down a checklist, asking all the same questions I had already been asked a dozen times before, he started linking all my symptoms together to offer an explanation: the persistent anemia, the elevated liver levels, the continued fatigue and stomach distress. He thought I had celiac disease. I sort of nodded in understanding, but really, all I knew was that it was some 'wheat allergy'. I was rather surprised since I never noticed any correlation between feeling bad and consuming gluten before, but listened when he went over the signs of celiac and how it pointed to this conclusion. So I had my blood drawn and went home to wait for an answer.
In the meantime, I did research. As I started pouring over celiac websites, my jaw dropped: my symptoms were right on for the disease. Everything from the more tangible headaches, bloating, unexplained liver problems and anemia to the less concrete inability to concentrate, depression and fatigue. I knew in my gut, pun intended, that this is what I had. I had thought this was merely an eat-bread-and-get-a-tummy-ache thing, but my relief at finally finding the answer to all my health problems quickly dissipated as the reality of it set in: this was serious. The Celiac Disease Foundation defines it as "an autoimmune disorder that can occur in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine," but it goes deeper than that. That damage it does to the small intestine? Yeah, that means your body can't absorb nutrients, which essentially means that no matter how much nutritious food a celiac consumes, if gluten is still in the mix, those nutrients just pass right through, leaving your body - and your mind - deprived of the necessary vitamins and minerals it needs to function. If this deprivation continues unchecked, it can lead to things like osteoporosis, cancer and even MS. Scary stuff. Way scarier than the prospect of never eating another doughnut.
Since the tests had already been done*, I also spent the week cutting out the gluten to see how I felt without it. I read all these accounts from people who swore that they immediately felt better after making the change, but it seems I was to feel worse before I started to improve. The second full day without gluten, my body reacted in a most unfavourable way, beating me down with food-poisoning-like symptoms. Apparently, when gluten breaks down in one's damaged digestive system, the resulting peptides enter the bloodstream and bind with receptors in the brain that mimic opiates like heroin and morphine, so when you take that abruptly out of your system... well, a drug withdrawal-like experience can be what you get. At least when I got the test results confirming I did in fact have celiac, I was at least thankful I already had a head start in de-glutening my life.
Being the food-lover that I am and realizing the extent to which this would affect my life, this diagnosis came as quite a blow. All those burgers I chowed down on, the weekend brunch spots we had yet to discover, my beloved Krispy Kreme I planned to consume every time I would visit the US, I would have to say farewell to, for good. I admit, I cried over this a lot while waiting for the test results, then had myself a big sob session once the diagnosis was confirmed. Retail therapy as means of distraction has also played a big part. It seems silly, I know. It's just food. Food that was making me terribly, unknowingly sick. Perhaps it's a sentiment of the privileged, but food is a luxury of choice, not to mention a powerful tie to memories. There's a huge emotionality behind it. Thanksgiving at Grandma's, Mom's Christmas cookies, your favorite cake on your birthday. Hungry? Feel like fill-in-the-blank-here? It used to be I could go out and get it. Now, if I'm out and I get hungry, I'd better damn well hope I remembered to stash a gluten-free bar or piece of fruit in my bag or I'm S.O.L. Friends invite you over or out for dinner? That's where that purse stash comes in. Again. It's a complete and total game-changer for what was our usual way of life.
While my heart is still heavy with its recent adieu to gluten, I'm trying to stay thankful that this disease is totally manageable. My focus for now is being kind to my body. Not wanting to risk any possible cross-contamination, eating out is off the table, so to speak, for the time being. Alcohol, coffee and milk are also on hiatus in an attempt to be as gentle and non-irritating on my digestion as possible. You see, once the gluten has been cut out, the body still needs another one-two years to get back to normal. Normal takes time for such a damaged system. So while my gut slowly repairs itself, I am still desperately in need of nutrition and am being hooked up to an IV once a week for iron infusions, since like even the most nutritious food, my iron pills remain mostly unabsorbed. It's been a real test to my aversion to needles, the first session resulting in me passed out cold within the first two minutes of starting the infusion. Thankfully, the second week I managed to stay conscious, with the nurse continually popping her head in with a worried expression, undoubtedly anxious to find me slumped over in the chair. Two weeks down, three more to go. As a good friend said to me, I am facing my fears head on and expect to be a pro with needles by the end of this. Perhaps this warrants another tattoo to celebrate...
So I am doing all I can to move forward. I'm reading (and translating) labels with a fine-tooth comb, researching, cooking three meals a day, searching for hard-to-find ingredients/GF products online. Needless to say, it's been exhausting on my already taxed system and I still have a bit of an uphill battle ahead. I still have much to learn and even more to understand about where gluten is still hiding in our home. I still have days where my mind seems unable to handle much more than zoning out to a television series and my body can't quite handle the trek to the grocery store. But I have good days too. Days when I realize one of my favorite meals to cook is naturally gluten-free or when I find a recipe for baked goods that has a plethora of comments about how it's just as good as 'the real thing'. I am so thankful for the online resources and community that have already been a lifesaver during this period of adjusting to living with celiac and all its required day-to-day changes.
My hope is that I can share some equally useful information that might help someone who has just been diagnosed feel not so alone, not to mention delicious recipes that are gluten-free - and restores a deep enjoyment of food without any inkling of deprivation. It is my new road, one that I know I will stumble on and perhaps take a wrong turn here and there, but one that I am committed to for the health and well-being of my body and mind. It will get better.
*Changing one's gluten intake before a celiac test can alter the results and provide a false negative. If you think you might have celiac disease, talk to your doctor about what you need to do to be tested.