This morning, Elisabeth Hasselbeck went on GMA to discuss Celiac Disease. It is an autoimmune disorder: your body creates antibodies
to gluten (a protein found in wheat and related grains) and ends up
attacking its own intestines.
Claire LaZebnik: The child of a good friend was diagnosed with Celiac Disease a few weeks ago. Celiac Disease is an autoimmune disorder: your body creates antibodies to gluten (a protein found in wheat and related grains) and ends up attacking its own intestines. It's completely curable with a gluten-free diet, but until it's correctly diagnosed, it can make the patient extremely ill. My friend with the newly-diagnosed son was overwhelmed by all she needed to know to keep him healthy. "Don't worry," I soothed her. "You have me."
My own son was diagnosed with CD over ten years ago, after he had stopped growing for two years and showed a strange tendency to vomit up entire meals. My doctor assured me we were lucky because it's completely curable by diet, and I tried to feel lucky, but I remember standing in the supermarket, literally crying because I didn't know what I could safely buy anymore. Gluten lurks in unexpected places, like soy sauce, barley malt (found in almost every major cereal), and seasoning mixes. Manufacturers sometimes "dust" foods with flour to keep them from sticking. I had to learn to read every ingredient on every single thing I bought.
The good news? Food labeling has improved dramatically over the last decade, more and more companies are labeling products "gluten-free," and restaurants have become much more sensitive to the issue.
I've developed many tricks, resources, and recipes to keep my son well-fed and well-nourished, and now I get to pass all my acquired knowledge on to a good friend. I've already taught her how to mix her own flour, based on a formula by "The Gluten-Free Gourmet" Bette Hagman (equal parts tapioca flour, rice flour, and cornstarch, with a small amount of potato flour). With a canister of this flour on my counter, I can bake anything.
Well, almost anything -- you start to learn which recipes do and don't work with gluten-free cooking. You want recipes with a lower proportion of flour to other ingredients, so something like a carrot cake is good, but a simple pound cake may not work. This year I made Irish Soda Bread for St. Patrick's Day, using a traditional recipe, this GF flour mix, and a spoonful of xanthan gum to hold it all together, and it came out great (the large amount of sour cream in the recipe didn't hurt).
My secret baking trick? Ordering really good GF cake mixes online (trial and error taught me which brands are best) and then using my very worn copy of Anne Byrn's The Cake Mix Doctor to make GF bundt cakes, bar cookies, cupcakes, and layer cakes that are indistinguishable from wheat-based ones. Thank you, Anne!
At restaurants, my son can order for himself now (he's fifteen), but for years we did it for him, double-checking to make sure nothing was marinated in soy sauce or sprinkled with flour before being braised. I can't tell you how often the carefully chosen plate of food has arrived ... topped by a slice of bread that the chef threw on automatically.
Our hearts sink, we sigh, and ask to have a fresh plate of food without the bread -- and, no, it's not enough to simply remove the bread and re-serve. (Even a crumb of gluten can damage the intestines of someone with CD.)
We recently traveled through Europe, where every morning the rest of the family would gorge themselves on croissants and crusty rolls, while Johnny would content himself with a yogurt, an egg, or some fruit.
At dinner, though, we'd make sure he'd have plenty to eat, once even going to an all-gluten-free restaurant (my husband had tracked it down online before we left). We went to another gourmet restaurant where we showed the waiter a card with Johnny's dietary restrictions written out in French (something you can also get online). The chef kindly made some substitutions, and Johnny had duck for the first time and said it was one of the best meals of his life!
The most important strategy of all in dealing with Celiac Disease? Having a good attitude. At every school function and party that my son goes to, the food is almost entirely made of things he can't eat -- pizza, subs, cookies, chicken nuggets, etc. We realized early on -- he, his father, and I -- that we could all moan and complain about how insensitive people were and how mean it was for them to serve things Johnny couldn't eat, OR we could just call ahead to find out what they were serving, pack up some separate but equal food for him, and let him enjoy the celebration.
Sure, there have been times when we've forgotten his food and my son's gone through an evening eating nothing but potato chips and ice cream, but you know what? He survives. It's no big deal. He's healthy, happy, and full of energy. The doctor was right: we're lucky.
|Claire LaZebnik is the co-author, with Dr. Lynn Koegel, of Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child's Life and Growing Up on the Spectrum: A Guide to Life, Love, and Learning for Teens and Young Adults with Autism and Asperger's. She lives in Pacific Palisades with her husband and four kids.|