Does She Have It or Doesn’t She?

 

Marsha Delaney: Posted on Wednesday, March 16, 2011 10:17 PM

A major fringe benefit of studiously reading each and every ingredients label before placing any item in my shopping cart, was that I realized, for the very first time, the amount of chemicals and crap I’d been feeding my family. Why did frozen taquitos have to have 35 different ingredients, most of which were unpronounceable? It became clear to me right off that I wanted to feed my family more natural food. The fewer the ingredients, the better. This basically cut out all pre-processed foods. Not only were they unhealthy based on the paragraph of foreign ingredients that didn’t sound anything like food, but gluten appeared to be present in just about all of them. And fast food, bye-bye.

If you think your kids can’t survive without fast-food, you’re wrong. I thought my kids would implode if they didn’t get their weekly rationing of chicken nuggets. I thought I’d have a hard time surviving the week without the trip to the McDonald’s Playland apparatus (I needed it as much as they did). Guess what? After we stopped going, they stopped caring. They don’t miss it at all. They never ask me for fast-food anymore, and my kids (as earlier demonstrated), are not the perfect little Mary Poppins’ charges.

As my daughter’s health improved tremendously, I was ecstatic. Hip-hip, hooray! We found and fixed her problem! Oh wait. We still needed to get her blood tested to confirm her diagnosis. We did.

Her doctor called me a few days later. She came back negative for celiac. “How can that be?” I asked. She was as surprised by this finding as I was. She then informed me that kids often show false negatives on the blood work and that she believed, if we had her tested again in a few years, she would probably come back with a positive result.

After more painstaking research, mostly online, I learned that I should have had her blood tested right away and I should have held off on switching her to a gluten-free diet until after her blood had been drawn. She’d already been gluten-free for two months. The change more than likely interfered with the test because the test reads the antibodies the body produces to attack gluten. If there was no gluten, there would have been no antibodies to read. Duh. I wished her doctor and I had both been more informed on this little tidbit of information before we changed her over.

“But this is working,” I whined to her doctor.

“I know,” she said. “That’s why I think you need to keep doing what you’re doing. Stick with the gluten-free diet. It’s working.”

“Okay,” I said. “I intend to.”

My daughter overheard me talking on the phone. The moment I hung up she said, “You mean I don’t have celiac?” she asked, practically jumping up and down with excitement. I could actually see the images of pastries, donuts and baguettes swirling above her head.

“Well, no,” I said, trying to figure out how I was going to break it to her that I fully intended to keep her on a gluten-free diet. “But we’re going to keep you off gluten. It’s helping. I’m feeling better, too,” I said.

“I don’t care! If I don’t have it, I want to eat gluten!”

Our lack of a diagnosis was going to be problematic. If my daughter didn’t take it seriously (and why would she since we’d just been informed that she didn’t actually have celiac?), how was I going to realistically keep her away from gluten? She needed to be on-board with this or this was never going to work.

Her dad, it seemed, was going to fight this even more. He was already skeptical about our daughter having anything that ended in the word “disease.” Throw a negative test result in there and I knew there would be no convincing him otherwise. He’s not convinced of anything without a firm diagnosis.

The only other way of testing our daughter for celiac would be by taking a biopsy of her small intestines. I couldn’t fathom subjecting her to that when simply not eating gluten was working, even if it might convince the nay-sayer otherwise.

“Oh, she doesn’t have celiac,” he would say, and he would give her foods with gluten in them. Every time, she reacted badly. Countless times she had gluten in one form or another either from him or from somebody else, and even though she had a bad reaction every single time, he still couldn’t be convinced. Even now he isn’t convinced, although he does acquiesce that her digestive issues are all gone, her health seems to be completely fine, she no longer needs medication, each and every single time she has even the smallest of bites of gluten, she turns psychotic, she throws up, she gets a migraine and she breaks out in eczema, but he’s a tough one to convince, apparently.

I knew our daughter needed to be gluten-free, so I did everything I could to try to make sure she didn’t ingest a morsel. I only bought and served brown rice bread, brown rice pastas, and gluten-free food. I left my daughter and my husband no choice but to go along with this. I was hijacking our shopping list and our kitchen.

 

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