Lea has been milk free for about 2 years now. Eliminating milk has changed her life! Her stomach problems disappeared. Her nose is less stuffy. She rarely gets the eczema that was always plaguing her. Even her crabbiness that we attributed to being a teenage girl went away! (Well, almost.) These changes are why I am a Food Nazi, checking everything she eats. Asking people we visit if I can read their packages and see their recipes. You would, too, if it kept your kid safe.
She recently began having some more tummy aches. Since people with Down syndrome have a 10% chance of getting Celiac disease in their life, I wanted to check it out. Celiac is an inability to process the protein gluten which is found in wheat, barley and rye. She has tested negative in the past, but the tests aren't always accurate, she tests negative for milk, too! The doctor recommended going gluten free to see if her tummy gets better.
I have researched a gluten free diet in the past when we thought she may have Celiac. I have many, many friends who either have it, or have a sensitivity to gluten and don't eat it. Since I already read every package, and eating at a restaurant or even a relative's house is already a nightmare, I figured I could handle being GF. I know where gluten hides, so I can do it. There are so many GF products available these days, it won't be too hard. I am confident this will be easy.
Then I went shopping. Lea rarely eats bread or toast, so that is no problem. But what about snacks? Especially those run out the door in a hurry ones? I stood in Trader Joe's, staring. The funny thing is, I was staring at the cheese! I was so overwhelmed and starting to feel bad about taking away more of her favorite foods that I stood in the cheese section, eyes glazed over. I snapped out of it. Come on, Super Mom. You CAN do this! Lea isn't picky and is even excited to try some new foods! Step away from the cheese.
I got her some dried fruit like strawberries. She doesn't like most dried fruit. But I bought it because I didn't know what else to buy. I found some rice crackers that looked good. Ok, confidence returning. These are salt and pepper flavored, she will love these! I stepped into the condiment section and saw some ketchup. Mini panic attack. Ketchup has vinegar which is made from grain, right? Is that right? OMGluten! Lea LOVES ketchup. Barbecue sauce is next to the ketchup. Lea LOVES barbecue sauce! No more ketchup or barbecue sauce? She may as well never come out of her room.
I sat in the parking lot contemplating this. All the things she can't have. She is already so different without any food allergies! It isn't fair. It's hard to manage a food allergy, but for someone with special needs, it can be even harder. She just wants to be like everyone else. She does feel special when someone says "here, I made this just for you!" but watching everyone else eat birthday cake while she has something different is not fun for her.
By the time I got across the street to the Whole Foods parking lot, I was starting to tear up. It's not fair, why Lea, why not me instead, how will we do family holiday stuff now? My heart started pounding, my palms were sweaty. I really didn't want to have a breakdown in the parking lot, so I called my friend Kim. Celiac and gluten free for her and her kids for many years, Kim never cheats with gluten. Never. She is my expert. Thank God she answered her phone. "OMGosh, Kim, doesn't vinegar contain gluten? Lea loves ketchup and I can't imagine taking it away from her!" I gushed. She calmed me down and explained that most experts agree vinegar is gluten free. They don't have a problem eating it. Whew. Ok, she talked me down some more and told me "You can do this. It's hard at first but you'll be fine." Whew again.
Only one more contact with Kim while in the store, and I was on my way. Both Whole Foods and Trader Joe's gave me big huge lists of GF foods they carry. I found many different granola bar type things and some pizza crust. Pizza is what Lea is most worried about missing. The GF pizza we have had in the past has been fine, but no wheat AND no cheese....well, we will see.
The thing I had to realize, right there in the parking lot, is that yes, this sucks. But it's our reality now and it's time to move on and deal with it. It will be worth it when Lea is pain-free! Now I gotta go find a spot on the counter for Lea's GF toaster.