The site has been going for a week, and there are already several blog posts in the queue, but this one has been tough to write. It’s the story of how we found out Ava has celiac disease, and when her life changed. We’re not looking for pity, we just want you know what we went through so maybe it will help one of you or someone you know.
Here goes nothing.
When Ava was 2 or 3 years old, we always thought her threshold of pain was pretty low. She would complain — loudly — about the smallest fall, bump, scratch, or stomachache. She was a little pain in the ass when it came to behavior. She was just plain irritable. This is what we figured was average for a 3-year-old.
In the spring of 2009, at our daughter Ava’s 4-year checkup with the doctor, we learned that she had grown a quarter of an inch in height and gained only in the single digits of ounces — in one year. Obviously not normal for a 4-year-old little girl. How could that be? We knew she was a picky eater, but come on. Like many kids her age, she ate a lot of crap like chicken nuggets, macaroni and cheese, and anything other than the random fruit or vegetable we were able to trick her into eating after convincing her she loved them as toddler.
Our pediatrician told us she wasn’t worried yet, because she surmised Ava was on the cusp of a growth spurt. This is our little girl, though, our first child…and we were a little worried.
But we moved on, continuing to deal with Ava’s crappy moods and picky eating. As the summer continued, the stomachaches got worse. At least a couple of times a week she would have seemingly debilitating stomach pain, even causing her to cry at times, that would last anywhere from a few minutes to an hour or so. Sometimes she could be coaxed off the couch during these spells with a bribe of a fun game, time with Grandma or Grandpa, or a treat. A few times, she got carsick and would vomit in the car when she seemed perfectly fine before and after the trip. No other symptoms were presented at all, so we guessed she was just the carsick type.
After a while, even our families noticed and grew worried as well. My parents were especially concerned because many years ago my cousin Tracy passed away as a result of neuroblastoma at age four, diagnosed at three. The cancer started in her abdomen, and was possibly genetic. So, worst case scenario, Ava has cancer. Best case scenario, she is just a whiny, bratty kid with a sensitive stomach. We didn’t even know celiac disease was a possibility at this point. Like most people, we didn’t even know what celiac disease was.
So it was early July, and Carrie took Ava to the doctor to get checked out, armed with some incredibly sad family history and no idea that Ava’s own little body was attacking itself. She had some blood drawn, and we were told that one of the tests was for celiac disease…and what the hell was that? The tests came back with: no cancer, but evidence of celiac disease was present.
We scrambled to read as much information as we could about it, and the more we read, the worse it sounded. Seriously, it seemed like gluten was in everything. And what happens when you eat it can SUCK.
A person with celiac disease reacts to gluten like it is poison. The damage the small intestine does to itself can take weeks or months to fully heal. The big problem is your small intestine is where your body absorbs nutrients from food. When a person with celiac disease ingests gluten, the body turns on itself and destroys small hairlike “villi” that absorb the nutrients from food. This internal attack can be very painful and can cause G.I. reactions of varying degrees of severity in different people. Some folks might experience a mild stomachache, while some can get violently ill and spend time in the hospital.
Regardless, the real damage is done on the inside, where you can’t easily tell, and it takes a long time to fully heal before your body starts absorbing all the nutrients it needs. Some people may not know about it until later in life, when the effects of possibly decades of undernourishment cause all kinds of badness.
And I digress, because at this point, we still didn’t know for sure that Ava had celiac disease. The blood test is imperfect: you can test positive and not have celiac, or test negative but have celiac. The real telltale sign is visible damage, or scalloping, on the small intestine, that can only be found with an endoscopic biopsy.
So on to another doctor, this time a specialist, at Mercy Medical Center in Des Moines. A few weeks later, when we finally got in to see a pediatric gastroenterologist, he was able to nearly confirm celiac disease without even doing the biopsy. But we wanted to be sure, because it’s a pretty big deal…and it still hadn’t started to sound better as we kept reading about it.
The biopsy was scheduled for about two weeks later, right before our yearly family vacation to Okoboji. The worst part at this point was that we had to keep giving Ava gluten (a.k.a. poison) for two more weeks because in order to work, there had to be an active attack in process.
Those two weeks leading up to the biopsy sucked. Hard. I remember driving the kids for a day at Grandma’s house, listening by request from Ava to a live Coldplay CD we received after their recent concert at Wells Fargo Arena. She requested the song she called “the fix-you song,” and as I listened to the lyrics on the car stereo I started crying, because I knew I couldn’t fix Ava, at least not completely.
We have a lot of “firsts” in our lives. It’s not often that we have a lot of “lasts.” We had a lot of food-related “lasts” during this period, because in our gut we knew it would have to be that way for the rest of her life or she would get sick. She had her last Happy Meal from McDonald’s (actually a good thing), her last Oreo cookie, her last piece of cinnamon toast on wheat bread, her last bowl of Cheerios, her last “normal” pancake, and on and on. She took it like a champ.
August 6, 2009, was the day of the biopsy, when we knew for sure. Two days before we leave for Okoboji. Ava did AWESOME. What a girl. We met with the doctor and a nurse in a prep room were they chatted with us a bit, gave Ava a gown, and prepped her for a possible IV anesthetic. It turned out she didn’t need it and the gas kept her out long enough to take some pictures and a small tissue sample to examine under a microscope. After they finished the procedure, we went to be by her side again, and they showed us a picture of the inner wall of her small intestine.
The damage was evident, even to our untrained eyes. The very apparent scalloping, we were told, was not at all supposed to be there. The doctor who performed the procedure said he still wanted to examine the tissue sample to be sure, but it was done. Ava had celiac disease, 100% confirmed by phone call from the doctor while we were on vacation.
On the way from Ankeny (our home) to Okoboji, we stopped for some lunch at a HyVee deli, since we had to get the week’s worth of food anyway. I remember asking the woman at the deli counter if they had a gluten-free menu…and was not at all surprised to get a blank stare for my trouble. But we managed. It was then that we realized how awesome our little girl really is. We were able to find a package of pre-sliced apples for her to eat for lunch. After wiping down the table and making her a clean spot to eat, she said:
“I wish I could eat gluten…”.
And then she finished her sentence.
“…because I wish you guys didn’t have to worry about me.”
Wow. That almost killed me. I was floored. What a girl.
She’s still a champ, hardly ever gets bummed about all the food she can’t eat. It’s pretty amazing, actually. We do our best to keep it positive and try not say things like “normal food” when referring to gluten-containing food. We don’t want her to grow up thinking she’s weird.
There you have it. We’ve learned a lot and had our trip-ups, but since that last appointment in the spring of 2009, since we’ve rid Ava’s diet of gluten in August, she has gained 7 pounds and grown almost 3 inches! She lost a year of growth, but that hasn’t stopped her at all.
So far so good, and I have no doubt she will continue to amaze us.