Just under a year ago, in November 2019, we got up early and headed to the hospital for our 6-year-old daughter’s endoscopy. This was the culmination of over two years of trying to figure out what exactly was going on with her. Only a couple months before, when we first saw the pediatric gastroenterologist, we heard Celiac disease mentioned as a possibility. And we were 95% sure that would NOT be the diagnosis. We just figured this endoscopy was a formality to rule it out and then we could move on to other possibilities. But we were 95% wrong. When the results came back, she was positive for Celiac Disease.
The first sign of a problem came at the end of July 2017. We had moved to Florida a few months before and were trying to get settled into our new home. This particular week was a busy one – swim lessons every day at 8 am and Vacation Bible School every evening until 8 pm. She was three years old, and had been dry at night for over a year. But during this busy week, she had a couple of nighttime accidents. I just figured she was extra tired and things would return to normal in a few days. She continued to have nighttime accidents for three years.
The second sign of a problem was in November 2017. She had a fever for a few days that wasn’t going away and was complaining about her belly hurting. I thought she might have appendicitis. But it was the first of many urinary tract infections. Sometimes they would be close together; maybe three in three months. Sometimes she could go for several months without one. There didn’t seem to be any rhyme or reason to it. Her doctor suggested she get an ultrasound and a VCGU to check the functions of her bladder and kidneys. Both of those results came back normal.
She continued to have these same issues of bedwetting and frequent UTIs. She also began to have frequent accidents during the day. Her behavior and attitude were becoming more difficult to manage. Her doctors didn’t give us much guidance. They chalked the bedwetting up to genes, and blamed the UTIs on taking baths and poor wiping habits. So at four years old, after already being potty trained for quite some time, we began wiping for her again, wearing pullups every night, and constantly reminding her to “go potty.” We didn’t know what to do, but we didn’t like the way things were going. We were taking away her responsibility and dignity. We didn’t like having to give her antibiotics each time she had a UTI. We never knew if she was holding it in, or if she didn’t feel the urge to go until it was too late.
I felt strongly that the bedwetting and UTIs were connected, but was terrified of going down any rabbit trails online. My sister found an article that talked about the connection between the two relating to constipation. So we brought that up to her doctor. She didn’t seem convinced but gave us the usual spiel about drinking plenty of water, eating lots of fiber, and supplementing with Miralax if needed. She ended up being on Miralax for over a year, without ever finding the correct dosage. It was always either too much or too little. And she would always end up getting a UTI eventually no matter what we did.
Finally in August of 2019, we saw the pediatric GI. They mentioned diet, they mentioned laxatives and stool softeners, and they also mentioned Celiac disease. We were so confused. Why had no one brought this up before? Why hadn’t we been directed to do this until now? Didn’t people with Celiac disease usually have diarrhea and not constipation? We were in total shock. Once we got her official diagnosis, we learned that Celiac disease affects every person differently, and that when it causes constipation, it leads to the other symptoms she was having: bedwetting, UTIs, and frequent accidents.
We did not find any sources for this information during our search for answers. If your child is dealing with these issues, talk to a pediatric GI and see if this could be the cause of their problems. I hope that our daughter's story can help your child find health, and give you some hope and peace.
For more information about Celiac disease, you can visit the Celiac Disease Foundation website at celiac.org.