It took four years to get my son’s blood test to come back “normal.” Four. Long. Years! The little monster was diagnosed with celiac disease at 18 months. He’d started feeling bad and loosing weight, so the doctor ordered a blood test. The indicators for celiac came back so high, the doctor thought it might be a false positive and ordered an endoscopy. Sure enough, they found several aggravated ulcers in his small intestines.
And so began our battle!
We immediately cleared the pantry of anything with gluten, which resulted in nearly empty shelves. We replaced our cutting boards, pots and pans, and even the toaster. We checked all of our soaps, shampoos, detergents, and lotions, and tossed any that were questionable. We were on the right track. Although it can take months for the body to fully heal from the kind of damage my son had sustained, noticeable improvements came quickly. He got his appetite back, regained the weight he had lost, and was no longer in constant discomfort.
Next, we met with our daycare provider. They were incredibly supportive and agreed to do a deep clean and put systems in place to reduce the risk of exposure. Our little guy ate at his own spot for snacks and lunch, the teachers and kids washed their hands often, we even replaced the facility’s play-dough with a gluten-free homemade version.
Then we began regular check-ins with the gastroenterologist and nutritionist, and the little punk endured blood tests, like a champ, every few months.
It’s all about the tTGs
Things improved, but we couldn’t get the tTG level where they needed to be. And even though Anthony wasn’t in constant pain anymore, he did have regular stomach aches and frequent episodes of discomfort and lethargy.
The doctors explained that tTG (Tissue Transglutaminase) antibodies in those with celiac disease become elevated when exposed to gluten, as the immune system mistakes the protein for an invader. This results in damage to the villi in the small intestines, causing pain and making it difficult for the body to absorb nutrients. If not addressed, it can lead to whole host of serious health concerns. When we started, his tTG levels were over 100. Our goal was four or lower.
Fast forward a couple of years
We were gluten-free at home and our daycare provider was doing their best. But the blood tests were showing only marginal improvement. We got the tTG levels down to the high 30s, but nowhere near the target number. So we redoubled our efforts. We avoided almost all processed foods and eliminated dairy from his diet. We had discovered some limited research indicated that, in some cases, a celiac’s body could have a similar reaction to the casein protein in dairy as it does to gluten. So we figured it was worth a shot.
Items labelled gluten-free could no longer be trusted; they had to be certified. We read every label to make sure we weren’t buying anything from facilities that also handled wheat. We called manufacturers and joined online communities to discuss safe products.
These changes were probably healthier for our whole family, but they certainly made meal times challenging. There was no more eating out and no relying on pre-made packaged foods at home. All meals had to be made from safe, whole ingredients. We couldn’t enjoy a Friday night pizza after a long week, or throw a package of chicken fingers in the oven. No quick yogurt or pop-tarts for breakfast. And no good bread; the homemade, gluten-free stuff just isn’t the same. I would still enjoy a beer (yep, it has gluten) from time to time, but that was just a little treat for daddy.
We thought we had it licked. But even with all these changes, blood test after blood test came back with elevated tTG levels.
About the boy
Here’s the deal with my kid: he’s a bit behind most of his peers. We adopted him as a baby, after he had spent his first few months with a homeless birth mother and no stability. It’s not unusual for kids who start life this way to have a few minor delays. And since his birthday is late in the summer, we considered postponing kindergarten by a year. But his daycare was the one aspect of his life that we couldn’t fully control. We trusted they were doing everything reasonable to keep him healthy, but we also knew it’s hard to keep an environment like that free of contamination. So we made the decision.
He’s halfway through kindergarten now. He enjoys his new friends, loves his music class, and still thinks the bus is super cool. But he has his struggles and is working hard to catch up with his classmates. We often wondered if we should have waited the extra year.
Finally, we start winning
His doctor called last week to share the results of his latest blood test. Two minutes into the conversation, I had to close my office door so none of my colleagues would see me fighting back tears (I have a tough guy image to maintain, after all). We had gotten so used to bad news, that I just expected more of the same. But for first time ever, his blood work is normal…and his tTG level is 3.2. Halle-freaking-lujah!
He may struggle with academics for a few years. Or maybe he’ll repeat kindergarten. But who cares? He’s healthy and happy, and we now know we made the right choice.