Glutenus Minimus

We recently got back from Disney World, and you’ll be happy to hear that I will spare you from a  recap of my Neurosis Level 10 Planning Spectacular (which was, I have to say, my best WDW performance yet). I thought of everything and packed accordingly.

Oh, wait – with one caveat: I did not plan for a toddler who would projectile vomit, almost daily, all over Disney property.

Let me back up.

Like his brother and sister before him, my youngest child was a super chubby baby. He had giant cheeks, along with rolls in his forearms and cankles that required dedicated bathing inspections. At every check up, he was consistently in the 90th or above percentile for height and weight. I produce large kids.

In the last few months, he started to lose his future Olympian rugby player stature and seemed to thin out a little. It seemed to happen a bit younger for him than it did for his siblings, but the truth is that my mom brain is so fried that I couldn’t remember those exact comparative details.

So when I took him to his 2.5 year check up in December, I was pretty surprised to learn he had lost four pounds since June. Four pounds! My pediatrician didn’t believe it – literally – and said it must’ve been an error on the nurse’s part at his previous weigh-in, but of course I was concerned. He was due to have routine blood work and a state-mandated lead test anyway, so I asked the doctor if maybe we should just throw in a Celiac blood panel. He agreed it couldn’t hurt.

I had seen a version of this movie before, three years ago, when my oldest was six and stopped growing for a year. Because my mother has Celiac Disease and it has a genetic component, we ran the blood test on him. His numbers were slightly elevated, but the endoscopy (the decisive way to diagnose it) was clearly negative.

So we had been down this road before and I was sort of expecting the same outcome.

Wish denied.

My pediatrician called me with the blood test results and said that my youngest son’s numbers were off the charts positive for Celiac. In fact, they were ten times higher than what my oldest son had registered. And so, back to the pediatric GI specialist we went and scheduled the endoscopy for a few weeks out – it didn’t seem urgent – after our return from Florida.

And then, the vomiting began.

It was sporadic at first, like once every few weeks. Then maybe once every week or ten days. I honestly did not think it had a gluten correlation in the beginning because we were firmly in The Season of 12 Million Random Viral Things Going Around. I also wondered if he maybe was having trouble with lactose sensitivity or if his endless runny nose/phlegm was making him gag. But he had no other symptoms. He’d projectile vomit, with no warning, and then instantly be 100% fine afterward.

Hmmmm.

We didn’t think it would be an issue on our trip because it was happening fairly infrequently. Yes, we were concerned, but in the absence of any other symptoms, we sort of chalked him up to one of those toddlers who randomly vomits now and then.

Now and then suddenly became every 24-72 hours in the days before our departure. We began to suspect gluten as the culprit but would not have answers until the endoscopy, so off we went to Florida.

Then the travel gods had lunch with karma, or something like that, and decided that we hadn’t had a good old Fordeville vacation shitshow in a while.

And on five of the eight days at Disney World, he threw up.

In the hotel hallway. At Be Our Guest. On Main Street USA. In his crib on the Mickey sheets.

The good news is that nobody outside of our family even blinked. Not once. It was either Disney Magic or everyone is used to some level of sick traveling kids. So, thanks, fellow Spring Breakers, for not making us feel worse than we already did. Because we felt fucking awful about it.

At that point, we pretty firmly believed this was a gluten issue but here’s where the really horrible part comes in: To have the endoscopy (which was within a week at this point) be conclusive, you need to keep the child on gluten so the true damage can be seen during the test. So that felt painful to inflict upon him. We kept extra clothes for him and tons of wipes on hand at all times. Also, I bet you didn’t know the Disney poncho had an alternate use, did you?

I joke but it wasn’t funny to see how quickly this was escalating. After each episode, he was completely fine and it did not stop him from enjoying our trip. But, had we known how frequently it was going to  occur, we may have postponed.

Two days after we returned home, we brought him in for his 7am endoscopy and basically knew what we were going to hear. The GI specialist was going to tell us her findings from what she could see through the scope, but she would also biopsy some of the tissue – and we would need to wait for those results to come back to get a definite diagnosis.

I don’t know about you, but putting kids under anesthesia really makes me irrationally upset and nervous. I don’t like seeing them go forcibly to sleep, or watching their little bodies go limp once the medication takes hold. Because my son has terrible veins, the anesthesiologist warned me that they’d need to first put him out with a gas mask and then do the IV once he was sedated. They let us go into the procedure room with him for the anesthesia portion, to provide comfort, but I find that so, so hard to watch.

Thankfully, it all went off without a hitch and we had him awake and eating lemon ice about 40 minutes later. We were in the same exact room where my older son sat after his endoscopy and it was all very deja vu. Children’s hospitals are truly amazing places filled with wonderful, nurturing people who know every trick in the book to keep kids (and moms) at ease. It did not escape me for a single minute how lucky we were to be there in an outpatient capacity, while so many families spend significant time there with chronically ill children. Despite the circumstances, I felt lucky beyond measure.

The doctor told us she saw damage consistent with Celiac and that we should expect a positive biopsy. She left it up to us if we wanted to start eliminating the gluten right away or wait for a firm diagnosis. We had anticipated this conversation and bought a few gluten free staples for the house, and so we just went ahead there and then with taking the gluten out of his diet in hopes of stemming the vomiting – which we were told could take weeks.

That was twelve days ago and our son has not thrown up since. His appetite has increased significantly. In fact, I’m sure that some of the food issues we were seeing recently with fussiness and refusal had to do with how crappy he felt and how he was unable to express that to us. Sure, he still has age-appropriate pickiness but the full-on hunger strikes seem to have diminished. I honestly didn’t think we would see an improvement like this so soon. His color even looks better. On Friday, his pre-school teacher told me he is smiling more. I’m so glad he’s on the mend, but I’m also so upset by how awful he must have been feeling before this and how long it went undetected.

But, onward and upward.

My friends all give me a sympathetic groan of “Uggghhh” when I tell them we have to keep him gluten free. It seems like a pain in the ass. Honestly, I’m not upset about it – and I’m rarely a look-on-the-bright-side person. The truth is this: He is two years old. His unsophisticated palate consists of about seven foods. He will never remember the difference. And there are so many GF products out there now.

Also: This is totally manageable and he is getting healthier, so it’s all fine.

My mom was diagnosed back in 2004 with Celiac, which was basically the Dark Ages of Gluten Free Anything. She was in her 50s and had to change her entire way of eating from everything she’d ever known. At that time, she had to make a lot of it from scratch, as the products were so few and far between. The gluten free presence in restaurants was unheard of. And yet, she has always been unwaveringly diligent about keeping gluten out of her body, down to cross-contamination threats. And so, of course she is a tremendous resource to us right now (and her soft spot for her youngest grandchild probably increased about 4000% in GF solidarity). Now, it seems that everyone knows someone who is gluten free for one reason or another, and I have gotten so much helpful advice and sincere offers for assistance in navigating this path.

Will our whole house go gluten free? Probably not. I’m definitely concerned about keeping the cross-contamination down from my older two kids, but that’s manageable. My husband has a certifiable addiction to most foods with gluten, so I don’t think he’s ready to have the pillar of his food pyramid taken away from him. Yet.

My older kids have to be re-tested for Celiac in light of their brother’s diagnosis. I have to be tested, too. So we’ll see how all of that nets out.

For now, I’m just glad to not have cleaned up vomit in a while. I’m glad my sweet boy is feeling better. And I’m glad that gluten free cookies don’t taste so bad.