Flour-Less in the Flour City

Today I was surprised and also somewhat ashamed to discover that if one runs out of bacon, yet is craving something salty and vaguely meat-like, frying Oscar Mayer bologna in the pan is a fairly acceptable alternative. Certainly not a perfect substitution and nowhere near as fulfilling as bacon, don't get me wrong, but in a pinch it can make do.

Unlike most people, before I boldly slapped my bologna in the pan, I not only read the ingredients, I Googled more specific nutrition facts. Daring, I know - a terrifying notion to most - but in my case, I had no choice: Just prior to New Years 2010, I was diagnosed as having gluten intolerance, aka Celiac Disease, an autoimmune disorder that prevents the body from digesting the gluten protein.

Gluten is found in many naturally occurring grains (such as wheat, rye, barley, bran, bulgur, durum, einkorn, faro, semolina, farina, spelt, triticale, kamut - just to name a few) but where it becomes tricky is all the hidden gluten to be found in food, particularly artificial ingredients that might have a gluten-containing base. Even trickier are those foods that are naturally gluten-free, but are prepared in areas where gluten-containing foods are as well, thus contaminating what should be "safe" foods (oats are a good example of this: naturally gluten-free, but prepared with wheat or other "dangerous grains"). Thus my quest to learn all the unsavory parts I was contemplating consuming in my bologna before just going ahead with my mad culinary scheme.

As you can probably guess from reading the above list - a list which I assure you is by no means comprehensive (side note: this list is incredibly helpful to learn more about safe/unsafe foods for someone with gluten intolerance) - changing from a "normal" diet with no limitations to a gluten-free diet is incredibly challenging. Think about it: After years and years of eating anything and everything you wanted, now you can't have traditional bread, crackers, pasta, croutons, pastries, pizza, beer, anything breaded (deep fried is difficult too because the vat of oil may be shared with gluten-containing items) - and now all of a sudden those polysyllabic artificial ingredients in your processed foods become pretty darn important to know what they actually mean. It forces one to become more conscious of what one eats, which is not always a fun thing.

At this point I find it appropriate to inform you lovely people that one of the first nicknames of Rochester is the Flour City, owing to the mills along High Falls making the then-fledgling city the number one flour producer in the United States in the mid 1800s. Nowadays the moniker has been changed to the Flower City, honoring the bounty of blooms in Highland Park so celebrated during the Lilac Festival. A homonym, I know, but to me the newer version sounds much cutesier and thus pleases me more. But I digress.

So with all this temptation around me - an abundance of bakeries, a gaggle of gourmet pastas all locally made - why not just give in and eat gluten anyway? After all, I had been eating it all these years. Well, as I mentioned, Celiac Disease means the body can't digest gluten. When a person with Celiac consumes gluten, it produces a wide variety of symptoms, most commonly severe intestinal distress, but also migraines, asthmatic responses, depression, anxiety, vitamin deficiency, even neuropathy, delayed puberty, short stature, and difficulties with fertility; my own doctor informed me that Celiac Disease manifests in so many different ways, that one could tell her any number of physical symptoms was due to Celiac Disease, she wouldn't be surprised. It really is something that can affect any body system, and as a result it often gets misdiagnosed as other illnesses like Irritable Bowel Syndrome, Fibromyalgia, and a variety of other ailments.

So you may be wondering to yourself, "Dude, why did it take so long for you to get diagnosed? Didn't you know something was wrong? Didn't your parents take you to a doctor as a kid? What tomfoolery is this?!" Well, believe it or not, my situation is pretty common. Since the symptoms are vague, it's not always a doctor's first suspicion. Hell, I only got tested when my older sister was diagnosed in November since there tends to be a genetic link. It is estimated by the Center for Celiac Research that approximately 3 million Americans have Celiac Disease, most of whom are undiagnosed.

Sadly, in this country medical research tends to be largely funded by the pharmaceutical companies. However, there is no pill that can cure or treat Celiac: the only treatment is to follow a gluten-free diet. Since there is no money where there is no option of a cure, research for Celiac Disease in this country is profoundly lacking.

Those of us affected by Celiac Disease know this is a huge problem. This Saturday, 6/12/10, is the ninth annual fundraiser Making Tracks for Celiacs, a walk to raise money towards Celiac research. It is the hopes that the more research is funded, the sooner people will be diagnosed with Celiac Disease and possibly the more food producers will be aware of the need for clearly labeled products and the need to prevent cross-contamination. In the Finger Lakes region, the walk will be taking place at Brockport High School with registration starting at 9AM and the walk kicking off at 10:30AM.

You may be asking, "Lex, you've only known you have Celiac Disease for, like, six months. How are you able to talk so much about this fairly new diagnosis?" Well firstly, when you know the only way to treat your ailment is to avoid certain foods, you learn quickly to adapt - admittedly with some growing pains (I can't count how many times I wailed, "I JUST REALIZED I CAN NEVER EAT *INSERT GLUTEN-CONTAINING FOOD HERE* AGAIN!"), but acceptance does come, in time.

Secondly, I cannot be grateful enough for the help of the local chapter of the Gluten-Intolerant Group, the Rochester Celiac Support Group. They have not only basic information on Celiac Disease for neophytes like myself, but a compilation of members' recipes, local shops that carry gluten-free products (some even specialize specifically in gluten-free baked goods!), and my personal favorite, a list of restaurants that have gluten-free options. While not comprehensive, it was a good jumping off place for me: The diagnosis, for me, meant a lot less eating out, but I didn't want to completely deprive myself of the occasional bite out, and it was good to know there were options out there that would understand my dietary needs and not just cock their head and ask "Wait, you're allergic to what?!" Their listserv is quite active and offers helpful hints as to local offerings that are safe - and also not so safe. Their information has made going flour-less in the Flour City not such a challenge.

Two members spoke on the local news on the upcoming walk in Brockport, as well as some basic information about Celiac Disease. There is no link for just the video, but you can watch it here.

If you have gluten intolerance or know someone who does, please look at the website for Making Tracks for Celiacs and consider donating. This is something that would not just benefit Rochester and the Finger Lakes, but overall health nationally. I know both my sister and I would have had considerably fewer health problems throughout our lives if we had been diagnosed sooner and we both feel much healthier than we ever have following a gluten-free diet. We'd like to see a world where other kids don't have to struggle to figure out what was wrong as we had to. My sister is even participating in the walk (yay!). No dollar amount is too small - if you are able, anything would be appreciated.