Celiac isn't a word you'll often hear in my house. Disease is a word you'll never hear. It's not that celiac disease isn't a problem in my house, it's a gigantic issue in my family. But it's not a problem. It was a problem. It was the reason for lots and lots of problems and almost stole my baby from me. But that's the bad stuff and I don't dwell on the bad stuff. We don't dwell on the bad stuff. Not that it's forgot, just that it's over.
Gluten & Gluten Free are words uttered all day, every day. Why? Because it's important. I'm hesitant to say this but being gluten free does define who we are as family and as individuals. All 5 of us. We don't eat gluten free, we ARE gluten free, and yes, there is a difference.
Gluten Free is our life. It more than our medicine. It saves us from pain and illness. It makes us happy. It is hard. It makes us stronger. It is annoying. It exemplifies our willpower and our strength. It requires thought and planning and creativity. It actually can be fun. It bonds us as a family. And we all have to care about every table we sit at and every bite we put into our mouths. And thats okay because gluten free makes us good. And gluten makes us not good.
My kids know what gluten is and that it is something they can't have. And most days, they are okay with that. My 7 and 8 year old are experts. They speak intelligently on the subject and often answer questions posed by teachers and other students. They are role models. When my son wrote a biography about what makes him special, being gluten free was high on the list, right behind being a great football player. Even my 3 year old knows to ask if a food is gluten free and never ever complains if I tell him he can't have something because he KNOWS if it's not gluten free it hurts his tummy. Gluten free food feels good.
We all miss a good pizza. But we didn't appreciate a good pizza back when we could. We ate it. A lot. Too much. And enjoyed it. But now, when we indulge in a gluten free pizza, it's a project that requires traveling to a place we deem safe and spending a small fortune, and we relish each and every bite. Pizza night is a party, a big deal, not a quick bite on a random rushed weeknight. And that's good.
My two sisters are gluten free. One of them tested negative for celiac but after avoiding gluten for a while, realized it was most definitely a problem, a problem she and her doctors had been looking for answers for for years. My other sister didn't get tested but tried it and found her daily migraines completely vanished. Her doctor is shocked. And interested. I've found my own doctor has less knowledge than I do yet maintains a gluten free diet himself. I can tell you horror stories from doctors in the past, but that's the bad stuff I'm not dwelling on. Same story as you've heard before, many doctors, different kinds of doctors, no answers to serious problems. But the tides are changing. Not because the science and the research are improving, that's still a slow go. It's people. Ordinary people. People who are sick and sick of having no answers. People whose kids are sick, physical or mentally. People are catching on and asking questions. Seems doctors are hearing more and more from folks that tried gluten free on a whim and found it to make a difference in their lives. It makes me angry that many doctors are behind the learning curve but that is changing. And that change is very good.
The celiac community taught me everything. And Google. When my baby was sick and I was desperate, I found enlightenment at celiac.com and heard stories and advice on their forum. I shocked the docs and found the cure for what they deemed uncurable. My baby wasn't sick for no reason, he was sick for a reason. A stupid reason, it was toast and chicken broth that were doing him in. When I noticed right away how gluten free was changing the whole family, it wasn't the doctors or the nutritionist or the dietician that got me on track in this tumultuous celiac world, it was Google again with celiaccentral.org, About.com and the wonderful world of twitter that educated me and made me not feel so alone. People helping other people. Smart, informed and inspirational people. Because they know. And they know most people don't know. Expertise comes from living the journey. And well, someone on twitter said it well, something like this... When celiac affects you or your children, you suddenly become an advocate, because you have to. And I might add, it's also because you want to. When I share my story or what I've learned, it's because maybe I know something that might helps someone else not suffer so much. Over food. If I help 1 person then I done good. Lots of people out their doing good. The celiac community is so so good.
But it bothers me that the amazing celiac community is getting kind of angry and kind of stale. It has no humor. And fights among themselves. It often doesn't like that the celiac gluten free world, the 1% celiac, recently, officially, scientifically opened up to the masses - the gluten sensitive, the 6%, or maybe 20%. I even saw 1 doctor estimate the stats to be closer to 60%. Millions and millions of people who don't tolerate gluten either. But there are no tests to confirm it. And little scientific understanding. And lots of misunderstanding and guessing. Sometimes bad and sometimes good.
Out of no where, the gluten free market has exploded. And it is full of uneducated people kind of trying it out. Hopeful people. But confused. And companies catering to gluten free consumers. And both are getting it sometimes right and sometimes wrong. Mostly because they don't know any better. It's hard to convert a celiac to a gluten free life, it's harder to fully convert someone who hasn't been told gluten free is a medical necessity but thinks they are doing something good. And for many of them, they are doing something good. And if they get it right, maybe their life could be good too.
But the gluten free world is a mess. Those of us who have to be gluten free have to explain at a restaurant that our gluten free is the serious kind, we need to triple check a package label because sometimes gf isn't all that gf after all. It's not always good. But having options, expanded selection in the supermarket and more restaurants offering options beyond a salad, we'll that is good.
The thing that drives me batty is... Celiacs spend too much time being serious about their disease and being angry at those who want some of the gluten free magic for themselves. Or getting angry at a joke about the gluten free craze. Hello my fellow celiac community members... WE HAVE A DISEASE WHERE PIZZA IS POISON. WHERE A CROSS CONTAMINATED SPOON CAUSES TORTURE. It is awful, it is painful, but come on - it is kind of humorous. Not the disease, that's not funny, but the ridiculousness of it all. Show of hands, who has ever brought their own silverware to a restaurant? Who ever drilled a bartender about the source of their vodka? Death by breadcrumb should be our motto. Yeah, it is our reality, but it is weird and really, really interesting. And it is wonderful when people talk about it. In our schools, in restaurants, in the neighborhood, in the media or on late night tv. Let's talk about it. I don't like it when it's talked about wrong, but when the talk is right, that's good.
My point in writing this too long piece is that I have a message. It's a good one.
Hey Celiac Community - I have 3 things you need to hear this Celiac Awareness Month:
1. No one wants to hear about a disease. The word celiac is icky. As soon as you say the words disease or awareness, most of your potential audience tunes you out. But people DO WANT TO HEAR about other people who were sick and got better without drugs or medicine. The words "gluten free" are cool, they are trendy and when you use them, people will listen to you. It's a marketing thing, capture your audience with buzzwords, it's a trick and it is good.
2. Obsessing over the seriousness of the illness makes us look like even more ridiculous than the the ridiculousness of our lifestyle. My feeling is, I control this disease and if I do my job right, I dont have to think about this disease progressing. People, children... are dying from cancer and heart disease and battling degenerative diseases and genetic diseases for which there is no cure... These are scary and heartbreaking and very very bad. (And sometimes may even be gluten related but I'll save that for another day). And our disease has a food fix. So perhaps it is time to lighten up. Talking about gluten is good. Talking about how good it is to be gluten free is good. Talking about how horrible things were before going gluten free is good. Encouraging every one of us who is trying to make a difference is good. Accepting that our disease is ridiculous and seems a bit funny, we'll that can be good too.
And most important...
3. Let go of your frustration with the fad dieters, the tryers, the gf trend setters and the companies hoping on the gf bandwagon. Stop fighting them and educate them, let's be teachers and find creative ways to educate the masses.
We are the 1%. The gluten free revolution is happening, like it or not and WE NEED TO LEAD IT. We need to stop caring WHY others want to be on our gf roller coaster ride and start operating the ride. Let's drive this crazy train before it spirals out of our control. Let's educate. Encourage dialogue, even if it's in a late night monologue. Let's stop ranting and start yelling our message loud and clear. Let's think bigger. Be bolder. Reach farther. And laugh at ourselves more often.