In that time, I've found that we're answering the same 5 questions for most people. I'd like to answer what I know so far.
What is celiac disease?
In basic layman's terms, it's a disease where your immune system attacks your small intestine any time you eat foods containing a protein compound called "gluten." The immune system incorrectly identifies your own cells as dangerous and goes after them whenever that trigger is present.
Will she outgrow it?
No. Just like I won't ever outgrow type 1 diabetes, celiac disease cannot be reversed or outgrown. It is not an allergy. Allergies can sometimes be outgrown.
What happens if she eats gluten? Does she get a tummy ache?
I don't know how she feels after eating gluten because she's never complained or been particularly symptomatic. She appears completely normal. But what happens when someone with celiac ingests even five ten thousandths of a slice of bread - we're talking a crumb, people - is that their body attacks their small intestine.
I keep meeting people who tell me they have celiac or their child has celiac, but that it's not severe and they can still tolerate some gluten. Just like people who tell me crazy things about diabetes - even their own - these people are incorrect. It's not okay that you or your kid eat gluten occasionally. It's not about cutting back. It's not about severity of your symptoms. It's about exposing your immune system to a trigger it picks up on in miniscule amounts. You eat it and your body will react, whether or not you show symptoms.
To put it frankly, my daughter never complained of a symptom. But her biopsy - at three years old - showed moderate damage to 4 of the 5 places they sampled in her esophagus, her stomach, and her small intestine. Her bloodwork was ridiculously high for antibodies. That means that that person you know with celiac who "can eat a little gluten" is subjecting his or her intestine to preventable damage. It might not make them feel sick, but it makes their body sick.
So, what can't she eat?
She can't eat wheat, rye, or barley. She can't eat anything malted. She can't eat butter out of a tub of butter that you might have dipped your bread knife in after spreading butter because of the crumbs. She can't eat french fries if they were cooked in the same oil as breaded chicken nuggets. She can't eat candy or sprinkles or nesquik or seasoning that was processed on the same machine as products with wheat. She can't have soy sauce. She can't eat bread, cake, cookies, pretzels, candy bars with wafers in them, ice cream cones, ice cream with cookies in it, pasta, pastries, pizza, etc - unless it's a specially made gluten free version made in a separate area from the regular ones with separate cookware and utensils. She can't eat her gluten free chicken strip if you cut it with the knife that you cut your roll with. It's that serious. Her food, utensils, pots and pans, toaster, silverware, spatulas, and even cooking oil can't have been contaminated with food that has gluten.
Think of it like a peanut allergy. You wouldn't tell someone with a lethal peanut allergy to cut back a bit on nuts, would you?
What can she eat then?
This has been my biggest personal lesson. I thought that people who were gluten free had to be grain free or carb free. I thought it was a form of paleo living. It's not. She can eat rice and potatoes and corn. She loves popcorn ("it's my favorite!") and brown rice. Cheetos. Potato chips. Marshmallows. Chocolate. Lots of different candy. Fruit, vegetables, meat, dairy, nuts, yes, and plenty of carbs, too. You just have to watch the ingredient list for stuff that you wouldn't expect to be in there. (Why does Blue Bell ice cream need wheat as a filler? Why do Rice Krispies need malt flavoring?)
If you're expecting Sweetie for a visit, don't be afraid to ask me questions. I can bring her what she needs. I might ask you to put the Christmas fudge (made with flour) or the cookies up on a high shelf while we're there. I might say that if we're going to eat out, I'm going to have to be super picky about where we go. I might say things like "that's probably okay, but let me read the ingredients" or "if the ingredients aren't listed, sorry, but we'll do without it."
We're a month in and I *think* we've avoided getting glutened, as they say. It's been a challenge in so many ways (five knives to make a sandwich? - bring it on!).
We even managed a vacation! Disney Cruise Line was AMAZING about our needs. I had heard it would be and I was not disappointed. Our dining room manager (Lubo) aboard the Disney Fantasy made sure that she had a lunch packed even when we left the ship at ports of call. He stopped by at every meal to make sure all was well. Sweetie was brought food directly to the nursery or kids' club when she wasn't with us. Even the pool deck was well stocked with GF french fries, GF chicken strips, and OMG...it's Gluten Free brand chocolate chip cookies. Our head server and assistant server were with us at every dinner, per Disney's rotational dining experience, but Anthony and Jeremy also sought us out at breakfast and lunch to make sure we had everything we needed. GF donuts, GF pancakes, GF waffles? You name it. It was awesome. (Not the GF rolls. Skip 'em.) We were sent to our room with boxes of Enjoy Life snickerdoodles and off-menu strawberries if we wanted it. My only complaint is a compliment in disguise; the wait for her plate was often lengthy, but that's because a manager had to oversee any "allergy order" to make sure guidelines were followed through on.
What we didn't manage well was airport food. When you're 3 and you're picky, sometimes tortilla chips and a banana is the best your parents can do.
The picky eating that started recently is another challenge, of course. I don't know whether the replacement items themselves just trigger a bit of normal-preschooler neophobia because they're different or if she has formed a negative association with items that normally have gluten and taught herself not to eat those foods. She suddenly turns down grilled cheese sandwiches and PB&J sandwiches and chicken nuggets now. Sometimes you tell her something is gluten free and she recoils from it. Other times she will tell you she can't eat something because it has gluten in it and you tell her, "no it's gluten free," and she will eat it. Sigh. We'll keep working on her. Three is hard enough without this!