Monday, August 31, 2015

Gluten Free

I'm so not trendy. I never have been. My wardrobe consists mostly of jeans, yoga pants and t-shirts. I've never done Bikram Yoga. Or Soul Cycle. I don't keep up with the Kardashians. I've never dabbled in vegetarianism or eating only raw foods. I don't juice. I don't shop on Robertson or Abbot Kinney. I'm really just not that cool. Would I like to be? Maybe sometimes. Sometimes I'd like to know who the people are on the cover of People magazine. Sometimes I'd like to look like I spent some time putting together an outfit instead of just staring into the void that is my closet and wondering why I don't have a single thing I like. Or that fits. (That's another issue, though.) Certainly in sixth grade I would have liked to have had Esprit pants instead of hand-me-down bellbottoms that I "pegged" to hide the wide bottom. (Dude, it was hard to wear pants in 1986 that had last been worn in 1979. Really hard.)

So how does this decidedly untrendy person, who doesn't even own a Vitamix ("What?" you ask. "How is that even possible?" I know. I probably live in the last suburban house without one.) hop on board the trendiest of all trendy eating habits? Well, you have a child diagnosed with celiac disease, that's how that happens.

So now our house is gluten free. Trendy. Hopped on that band wagon. I feel like such a poser when I ask for the gluten free section in a new grocery store. I am the imposter in the super hip vegan restaurant, which also happens to be gluten free. I wonder if people who see my grocery cart think I'm super with it because I buy gluten free bread. Oh yeah and we do a bunch of paleo stuff too, which I think gives me even more street cred. And I buy kombucha. You see how cool I am all of a sudden? Who knew a sick kid could make you so hip! (I think the freezer full of bone broth and the Farmers' Market sauerkraut brine aren't quite as cool, so we'll leave them out of this for now. But they're really good for healing your gut... look into that!) The Evans family is riding the gluten free band wagon!

Only here's the thing. It suuuuuuuuuucks to be gluten free. It really, really does. Because when you have celiac disease, there's no messing around with the gluten free thing. There's no cheating and having a beer just for tonight because you're out with the guys. There's no girls' weekend dessert splurge. There's no "oh well" accidental slip up. When you have celiac disease, gluten free really actually means GLUTEN FREE. None. Zero. Zip. Literally not one crumb.

Here's a little clue about what gluten free means for someone with celiac disease:

It means all new baking pans and cookie sheets and pizza stones and toasters. Why? Because those crumbs and baked on goodness can contaminate your child's food and that will make her sick. (It also means using the three inch stack of Bed Bath and Beyond coupons you've been saving just for an occasion like this!) It also meant that the women's shelter got a lovely donation of perfectly good baking supplies.

It means reading every. single. label. every. time. You know how it says "Made on equipment shared with wheat" sometimes on those labels? Or even "Made in a facility that also processes wheat"? Yep. That makes your kid with celiac sick. Very sick. So that stuff is out.

It means cleaning out the pantry and fridge and freezer -- donating all food from above plus the obvious ones like, you know, flour. And then wiping down every surface because, you know, crumbs.

It means a twelve year old having to ask a waiter or a food service worker to wash his or her hands, change his or her gloves and clean off the work surface where her food will be prepared. Every time. (If you ever want to feel like a prima donna, here's a good way to give that a go.)

It means trying some really bad food. Really bad. (Bread, crackers, baked goods, hamburger buns that will give you nightmares... they aren't all winners.)

It means having to say "No thank you" a lot.

It might mean you are lactose intolerant as well (at least in the beginning). And then you might have to deal with a mama who, when she sends you away for a weekend, obnoxiously labels everything, "There's dairy in here!" and tapes Lactaid pills to the Kind bars which aren't dairy free (because some of them are, and would she necessarily think to look to see if she grabbed one which wasn't dairy free?). And now you're eating dairy free and gluten free food, and really, is there no joy in the world?

It means having to explain your symptoms (a lot!), which, when you're almost 13, you don't necessarily want to share with everyone.

It means you need gluten free shampoo and sunscreen. "Seriously, is she eating the sunscreen?" you ask. Hopefully not. But skin issues are a huge thing for people with celiac disease. And really, people, think about what you put on your body. Everything you put on your skin gets absorbed and goes right into your blood stream. But I digress...

It means you absolutely can never share a jar of peanut butter or a marshmallow roasting stick with a non gluten free friend.

It means explaining that gluten does not come from: milk, meat, rice, soy, eggs, etc. etc. etc. every day.

It means your whole family will now have to get tested to see if they have celiac disease as well.

It means a whole myriad of symptoms, some of which can send you to the hospital, many of which can certainly wipe you out for a couple days, all of which can have long term consequences.

It means explaining that your problem is SO MUCH WORSE THAN JUST A TUMMY ACHE!!!

It means months and months and months of being gluten free before you start feeling better. (Still waiting for this one!)

It means forever. You will not grow out of this. You won't eventually be able to sneak a bite here and there. Forever you will be gluten free.

It means you're hungry a lot. Whether that's from the malabsorption or from the fact that all you'd really like to eat is a big fat grilled cheese sandwich and you can't; you're hungry a lot.

It means your mama will worry about you every time you are out of her sight and control. (That maybe that nice man in the white van who is offering puppies and candy will also offer you a pseudo-gluten free cupcake and you'll take it because you're just so hungry AND you have a Lactaid pill in your pocket!) And you knew she was going to do that worry thing anyway because that's what she does. And also you've just started junior high school, which is actually on a high school campus, so there was already so much to worry about anyway. But again, I digress. You'll feel guilty that your mama is so worried about you because you really don't want her to worry.

But there are some amazing things that can happen when you or your child gets diagnosed with celiac disease:

It means cookbooks arriving in the mail from friends and family with notes that say things like, "You got this, Chris."



It means you know your parents and your sister and brother will go to bat for you to make sure that you are safe and healthy, even if that means arguing with (sometimes even well-meaning) friends or relatives or that they give up some of their favorite foods as well.

It means making a new friend with the other Girl Scout with celiac disease on the glamping trip, with whom you can share gluten free cookies and marshmallow roasting sticks.

It means you bond with your mama in the kitchen as you try out new recipes.

It means laughter through the fears in Children's Hospital with your mama and grandma, waiting for your biopsy: the three of you best knowing how to put each other at ease, and that is to make fun of each other!

It means bonding with your family as you try disgusting food together!

It means dance teachers who take pictures of gluten free doughnuts or cookies or anything and texting them to you, with just a simple text: "At Sprouts!"

It means amazing friends and family who you know will take good care of your child while she is in their hands.

It means your mom's friend's daughter talking on the phone with you for hours days after your daughter's diagnosis because her daughter also has celiac disease. And she tells you which flours to buy and also gives you permission to throw out the crappy gluten free food you try but don't like.

It means the waitress at the Country Club, who, at the beginning of the summer had never heard of celiac disease and has now become the celiac guru saying to you, "I just put myself in your shoes as a mom and thought how hard that must be for you to put your trust in me to make sure that your child doesn't get sick."

It means eating amazing food like you always have, that doesn't have to be labeled "gluten free" because it's real, whole food.

It means an opportunity to educate others about what celiac disease is all about.

It means other moms buying gluten free cupcakes so your kid can celebrate too.

It means amazing doctors who spend three hours with you so they know exactly what symptoms you have and they know you know exactly what you need to do to take care of this.

It means that you know how lucky you are to have the support system you have... friends and family and other parents who will talk to waiters for you and label peanut butter jars and buy you cookbooks and look over your shoulder to make sure you're asking the man behind the counter at Chipotle to change his gloves (and that he's actually doing just that).

Right now I am listening to the Indigo Girls singing an Elton John song. (I told you I was so uncool!) The lyric says: "I thank the Lord there's people out there like you." Bad grammar aside, I love this line. I really am so very grateful for all the people in our lives who are helping to make this transition so much easier. And there really are so many people! They are so much better than Esprit jeans in sixth grade!