Tuesday, September 24, 2013

My Kids Have Celiac Disease Chapter 2: Community

(Also see: My Kids Have Celiac Disease Chapter 1: The Diagnosis)

My first post-diagnosis shopping trip was awful. I'll never forget how it felt, mom of a newly diagnosed celiac (not to mention another whose positive test result would come a month later) just wanting to help my kid feel better and heal...but not really knowing where to start. I was standing under the glare of fluorescent lighting, tears in my eyes, blurring my view of the towering shelf of overpriced gluten free products. I was completely overwhelmed. I must have looked it, too, because a woman tapped my arm and said, "First gluten free shopping trip?" She ended up walking me through the gluten free products on the shelf, giving knowledgable reviews as a veteran celiac mom. She gave me a pocket-sized book from the Celiac Foundation. She gave me her phone number. Her kind interaction encouraged me more than anything else could have. It gave me hope that other families were not just surviving, but thriving with celiac disease.

A couple of weeks later I contacted a friend (hi Vicki!) whose son has celiac disease, asking for advice.  She called me and shared her favorite kid-approved recipes, tips, and products. My oldest daughter has been exposed to gluten twice since diagnosis, and reacted severely. I make a special, safe snack every time I drop the kids off at church or a birthday party. I pack lunches just for day running errands. I read every. Single. Label. I bought a new toaster. She's the only person who gets it all, as a mom who has been there before.

Just last month another celiac mom friend (hi Stefanie!) tagged me in a Facebook post. "Look what I found!" A new gluten free pizza crust had hit store shelves, much to our mutual joy. In fact, her specific comment was "Dancing in the aisle!"

Today, at the International Celiac Disease Symposium in Chicago, a bad apple of a speaker nearly ruined a day filled with intelligent, helpful talks. He falsely claimed that occasional, moderate amounts of gluten are fine for celiacs, that celiac disease is preventable through environmental factors, and that people who worry about gluten "especially women" are obsessive. (That's insulting to me on so many levels. I really don't have anything else to say about such ignorance.) At the end of the session, a microphone was available to audience follow-up questions. I screwed up my courage and walked up. I asked for clarification about environmental factors, since my kids don't have any of the common risks (specifically, they were exclusively breastfeed for 6 months, late introduction of grain into their diets, and they aren't c-section babies). For one, he didn't listen to the question (that wasn't that insulting - he wasn't paying attention to anyone's questions). Also when he did, he didn't understand it, so he didn't answer it. Everyone in the audience and the other speaker (who was awesome, by the way) knew he wasn't getting it, but I gave up and made my way back to my seat, visibly upset. Ok, I was crying like a weenie. A kind woman named Connie has been diagnosed for 17 years stopped me on my way to my seat and told me that basically that guy was full of it (I agree).

I sat down, and a psychologist who is a celiac patient and a mom of a newly diagnosed 8 year old tapped my arm. She had tears in her eyes and said "This is not your fault. You couldn't have stopped this." She looked into my weepy eyes and said "I get this too," referring to the heartache of seeing your child in pain, saddled with a lifelong condition. She gave me her card and asked me to email her.

After the talk was over, a dad from New York stopped by my table and encouraged me to not blame myself. His wife feels guilty for introducing grains a month earlier than recommended. Their 3 year old daughter was diagnosed last year. He said, "You couldn't have stopped this. It's not your fault."

Encouragement, support, and sympathy from people who get it has been invaluable these 11 months. This disease takes up a large chunk of my thought and time - not because I'm obsessive, thankyouverymuch - but thanks to the time, trouble, expense, and effort of a 100% gluten free diet, my kids are healthy. And that is 100% worth it.

No comments:

Post a Comment