Celiacs Must Give Up Bread but Can’t Give Up Hope

When I started this column a year ago I swore I would never write about my life-changing battle with celiac disease.

I am such a liar.

People with celiac disease are highly sensitive to gluten, a protein found in wheat, rye and barley. It is impossible for someone who does not have celiac disease to truly understand what it is like; how it changes your every-day life and takes away even the most simple of pleasures, like eating a sandwich. Until someone tells you that you can never eat anything containing gluten again without risking serious damage to your health, you can’t know what it feels like. You cannot understand the devastation, the denial or the carb-cravings.

Oh sure, celiacs aren’t exactly about to starve to death. We don’t need you to hold any telethons for us. But we are at risk of malnourishment. Celiac disease can damage the small intestine to the point where food isn’t being absorbed. This can lead to malnourishment, in addition to anemia, fatigue, bone or joint pain, arthritis, osteoporosis, depression or anxiety, tingling numbness in the hands and feet, seizures, missed menstrual periods, infertility or recurrent miscarriage and canker sores inside the mouth. People with celiac disease are also at risk for being cranky as F*&%. I literally have to sneak bread in one form or another (pita bread, cupcakes, pizza, whatever – it’s all manna from heaven as far as I’m concerned) every few months or else I can feel myself starting to go a little crazy.

It’s not like celiacs don’t have some options. Now that celiac disease has become more widespread – it’s been estimated that one in every 133 people have celiac disease –there is a variety of gluten-free “goodies” available. Of course, many of these products taste like crap. And since many celiacs are also sensitive to other foods like dairy, soy, eggs or yeast, many gluten-free products are still off-limits.

Celiac disease is not the worst thing in the world. It’s not an death sentence or contagious. But it does change your life in a way that most people can’t understand. During the past three years of my (mostly) gluten-free life I have found that cutting out an entire food group isn’t the hardest part. Neither is accepting that my life is different. The biggest challenge for me is not being angry about those things.

I used to think that I had to accept that my disease was permanent. But recently I’ve heard about scientists looking for ways to cure celiac disease through pills, shots and vaccines. Although researchers haven’t made any definite breakthroughs, some scientists believe that we could have a cure or treatment for celiac disease in as few as three years. When I first heard about potentially being able to eat wheat I was overwhelmed with joy. Then I read that many people with celiac disease said that even if a pill that allowed them to eat wheat existed they wouldn’t take it. Who are these people who don’t think life is made infinitely better by literally breaking bread with others? How could they not want a treatment to return their eating habits to a natural pattern?

I would be jealous of these people and their apparent lack of desire for real pastries if I for one second believed them to be sincere. But I don’t; I think they’re in denial or scared to hope things could change. I can’t wrap my head around it, around not wanting a pill to exist, if only so that those celiacs who do want to eat cinnamon buns have options. Because, really, we should all be in this together. That’s supposed to be the bright side of having a disease. You’re part of a group! You have bonds with total strangers that nobody outside of the diseased group could possibly understand! You “get” each other!

I think that deep down all celiacs do want the same thing (a healthy body that doesn’t break down when it ingests toast). But some of us have chosen to give up and accept our fates. Those celiacs are probably the smarter, well-adjusted bunch. But some of us cannot give up and do not accept our fate. We are the optimistic , and potentially crazy, bunch. We will eat our cardboard crepes but only until our magic pill arrives. We will never give up that last shred of hope because if we do scientists might give up too. We can’t let that happen, if for no other reason than my sanity might depend on it.