Questions, Answers, and Gluten

My children have always been small. We always joke about the boys hanging onto the last rung of the growth curve. My boys are twig limbed and bony backed things. Bug jokes himself about always competing for shortest kid in his class.

So when Duck started off measure small, I didn't worry about it. After all, he was cuddly and cute and meeting all his milestones, even crawling and walking much earlier than his two older brothers.

But around nine months of age, the baby boy who started small started to get smaller. He started eating poorly, taking less in at meals and then refusing more and more foods. His weight gain slowed, then his length started slowing.  This spring, he started loosing weight, falling completely off the growth chart.

We tried everything. We tried butter on everything, as many high calorie food as we could think of, having food available at all times. We went through multiple blood tests and urine tests and referrals to specialists. Nothing gave us any answers to why our sweet boy continued to get smaller and thinner. All his blood work was completely normal; no metabolic problems, no anemia, no signs of infection or inflammation. The specialists reassured as that, other than being thin, Duck looked wonderful.

They say when kids are hungry, they will eat. Duck proved to us that wasn't true. There were times we could tell he was hungry, but he wouldn't eat. He'd be fussy and sleep poorly, but would only take half a bottle, or a few sips of juice, or a single cracker.

Meal times became increasingly stressful, often ending with someone crying, usually me. We couldn't allow the older boys to have juice or milk or water at the table, because Duck would refuse any solid food the moment he saw something to drink.

During this time, I felt like a failure as a parent. Friends would post pictures of their babies, children with gorgeous round faces, big cheeks and dimpled legs and arms. My baby was scrawny and not a dimple to be seen.

Doctor after doctor would say, "Well, have you tried...?" Fill in the blank with anything you can think of.  Had I tried not giving him juice, making him eat, not giving him snacks, only offering this food or that food, actually feeding him?  I felt discouraged, judged, and angry.

During all this time, Duck continued to reach milestones, running, kicking and throwing balls, reading to himself, using more words and signs, dancing, making animal noises. Over all, the boy seems oblivious to the amount of anxiety caused by his disinterest in food.

Several weeks ago, we saw a gastroenterologist who recommended that Duck undergo an endoscopy. Knowing that Duck's blood work has been normal, I didn't think the endoscopy was likely to show anything. But I was desperate for answers.

A week later, I helped hold my baby down for an IV placement, and watched him placed under sedation for his procedure. 15 minutes later, the GI doc came and showed me endoscopy images that showed perfectly normal esophagus, stomach, and duodenum. He told me he had taken some biopsy samples; we would have the results in a week. But everything looked perfectly normal.

We resigned ourselves that his poor eating was probably behavioral. We met with a feeding psychologist who gave us some great advice.

Late last week, I got a phone call from the GI doctor that Duck's biopsy results had come back, showing the stereotypical changes of celiac disease.

So now we are a (mostly) gluten free family with a completely gluten free baby.

Hubster and I decided it would be easier if we made the change as a family so that meal preparations would be easier and Duck wouldn't feel left out. Due to the amount of tears by the older boys at the idea of losing some of their favorite foods, I agreed that their birthday cakes wouldn't be gluten free and they could still occasional have "normal" foods.

We have already noticed Duck eating much better. We're hoping sleeping better isn't too far behind.

Everyone around has been wonderful. Duck's daycare went through their entire menu, checking ingredients on everything and highlighting everything with gluten so that we know when to bring in substitutions. Friends with celiac disease have given us recommendations about which brands of gluten free pasta and breads to use and which restaurants have good gluten free options.

Gluten free is something of a fad these days. While I had been rolling my eyes at this, as I do most diet fads, now I'm extremely grateful, because there are so many options available. Our grocery store has an entire gluten free aisle.

Initially, this felt overwhelming. However, with all the support, all the information, all the options, this answer has been manageable. It's wonderful to have answers, instead of questioning my parenting ability.

And turns out, the entire family likes gluten free pancakes.

If any of you have had experience with celiac disease and living gluten free, I'm still desperate for more advice, more ideas, and any good recipes.