My Son’s Out Of The Blue Celiac Diagnosis
The first week of school my son came home from school telling me he had diarrhea. My first thought was we aren’t even in the first week of school and the stomach bug has hit our house. The thing, is we never get the stomach bug so I was a little thrown off.
After a couple of days of nothing urgent, my son went back to school but we also went to the pediatrician because the diarrhea wasn’t stopping. It wasn’t urgent, run to the bathroom kind of thing, just when he had to go poop, it was diarrhea.
Pediatrician said it’s probably a mild bug but he’ll be back to himself by the weekend.
Well, the weekend came and went and his poops still weren’t normal. Back to the pediatrician again and he recommended we do a stool sample. Of course kids don’t poop when you actually need them to so it wasn’t until the next weekend we finally got a sample and brought it to Children’s Hospital.
They were testing for salmonella, a parasite, and c-diff to name a few. Almost a week later after all results were back everything was negative. We were frustrated and confused.
We are now 4 weeks into daily diarrhea and we could tell he was losing weight.
Pediatrician recommend we go to a GI doctor but an in person visit was months away. With how skinny he was looking, I couldn’t wait that long. Luckily, we were able to squeeze in a virtual visit the next week.
Within 5 minutes she asked if we had been to any lakes, streams or water parks lately. And there I thought we had our answer! The week before school started we had gone to Margaritaville. She mentioned he most likely had Giardia, a parasite found in rivers, lakes, and water parks. Relief we thought! We have an answer. She prescribed an antibiotic for 3 days and then we should be in the clear. Or so we thought.
3 days came and went and a week later – still diarrhea. We were devastated and he was frustrated to say the least.
Celiac and gluten has started to cross our minds but to my knowledge, we have no family history and his stomach wasn’t actually hurting so I didn’t think it could be that. He just had diarrhea. It was strange to me, I associated Celiac with stomach pain and cramps also.
We messaged the doctor and she wanted to do complete blood work and another stool sample. Bloodwork was done that day but of course it took us another 3 days to actually get a stool sample.
Everyday for the next week I was getting updates on results and trying to analyze them myself. High inflammation markers, WBC count high but no real answers, 4 days later the stool sample came back positive for Giardia and the Celiac test also came back very high markers for Celiac disease. I was in disbelief. Could he really have Celiac?? I still didn’t understand.
The GI doctor called to explain that his tests for Celiac came back positive but the only way to determine if it was actually Celiac was to do an endoscopy. She wanted to get it done the next day but Halloween was coming up so we wanted to get through the weekend and Halloween.
His endoscopy was done the day after Halloween. He was nervous but did great. After the procedure, she explained her findings. She needed to confirm after the lab had time to review the biopsies but from what she saw, she was pretty positive it was Celiac disease.
All my research had said there was a 5% chance it could be a false positive. For some reason, part of me was holding out on that 5% but 2 days later on Friday evening when we were headed to a football game, I got the results. Confirmed Celiac.
I was so so sad but also relieved to have an answer. I immediately started picturing the obstacles we would face. Going to the football game, what can he eat? What would he do at birthday parties, school lunch, so many things. I told myself, I would stay positive and make this as easy as possible for him.
His birthday was that weekend, and the GI doctor said to let him enjoy a gluten filled birthday weekend and we’d talk with her the next week.
Instead of a gluten filled weekend and birthday, I made it a mission to have a gluten free weekend before we explained his diagnosis to him. That entire weekend of cake and cookies and dinner, snacks etc, everything was gluten free. When we sat him down on Monday evening to talk to him, we explained that going gluten free wasn’t bad at all. And actually fairly easy. In fact, telling him he had already been eating gluten free and he didn’t know it, helped him realize it wasn’t bad at all.
What I have learned:
Celiac is something you are born with, most likely inherited. So myself, my husband and other children are in the process of getting bloodwork done also.
While this did come out of the blue, it was something that was going to pop up at some point. My son’s Celiac just happened to be kickstarted by Giardia. The GI doctor said it could have come up from the flu, any virus, puberty or even later in life. At some point when his gut health would’ve changed, it could’ve brought out his Celiac.
I have also learned, Celiac isn’t just associated with your stomach hurting. It can be just diarrhea, it can be constipation, itching and hives, or even tooth decay. There is even something called Silent Celiac that children just aren’t growing because their body isn’t absorbing nutrients because of the Celiac.
So we are in this for the long haul. It’s been a couple of weeks of ups and downs and navigating it. But mostly we are positive about it on front of my son. And we don’t focus on what he can’t have but rather finding a gluten free version of his favorite things, like pizza, cake, donuts, chicken nuggets. Ya know, kid food.
And be sure to come back for more posts on how we are handling mindset, school and birthday parties and along with some of our favorite gluten free findings as we try them.
