Absence of Treatment isn't Absence of Care

For the past year I've started every day with rice-based toast or gluten-free cereal, accompanied by a cup of coffee or tea. When lunchtime rolls around, I'll usually have leftovers from the dinner before or a sandwich on the same gluten-free bread. Dinner is when I get more creative; Chinese, Italian, American concoctions...all happen without the existence of wheat.

Most of you know that I'm not doing this because I'm trying out a new diet, or that I'm doing some sort of crazed fad. I have Celiac Disease, an autoimmune condition that is triggered by the consumption of anything containing gluten. Reactions include severe stomach pain and rashes...continued exposure over a lifetime causes the intestinal lining to be eaten away, and that's when malnutrition and lymphoma sets in.

Gluten itself is an elastic protein that's most commonly found in grains, specifically wheat. Since wheat is in damn near everything nowadays, it's pretty tough to avoid. Think about that for a moment. No pizza, no pasta, no cake, no bread, nothing with soy sauce (it's made with wheat), and no beer. Some people have told me that they'd rather die than commit to the only treatment available: maintaining a gluten-free diet.
As often happens, communities emerge to offer support and advice. In Chicago, gluten-free options have started to emerge in more and more places as restaurants and manufacturers of food realize that there's a yet untapped market. There's a wheat-free bakery nearby, the pizzeria down the street offers gluten-free pizza, and one of the best cupcake joints in the city is owned by a Celiac. Times are getting better.

And yet...people seem to be unsatisfied. I can't say that I haven't ever held a product in contempt for containing gluten, but sometimes the anger of other patients seems to go too far. I met a fellow Celiac who remained obstinate in her belief that the medical field was lacking in its efforts to find a cure for Celiac Disease. "If they can't make a pill for it, they won't try to fix it!" is the cry that I hear most often. In other instances, doctors are chastised for not knowing the particulars of a condition that is only coming into the public light.

In their frustration, many patients have turned to pseudo-scientific methodologies for dealing with the disease. One acquaintance has "given up on doctors", while others seek succor in the form of wellness programs that are little more than half-baked nutrition programs built on the presumption that most ailments can be cured by allowing the body to heal itself.

I'm not certain where these people get off on bashing the very field that is keeping them informed and in good health. Sure, a diagnosis is sometimes difficult to obtain, but you'd expect that with a disease that is asymptomatic. Heck, did doctors know absolutely everything about every disease when research began? No. Some doctors came out of medical school only knowing that Celiac Disease was a real problem for your child to have, and that was it. Because that was the only information available at that time. I have no doubt that in the coming years more research will be published (because right now I know for a fact that it's being done), and that more solutions will come to pass. It's inappropriate that we be furious with our doctors for not being able to solve a problem with a quick fix.