A Celiac Diesease Story: Symptoms & Diagnosis

A Celiac Diesease Story: Symptoms & Diagnosis

This story describes the experiences of a child of one of my friends. I did not treat this young boy but found his story compelling enough to share with my readers.

Our family’s story began in March 2005. That month, our older son had a nasty bout of the rotavirus, which was going around the neighborhood at the time. After about two weeks, he was totally back to normal, but then our younger son Brady got it. After the same amount of time – about two weeks – he was not back to normal. While the digestive issues that come with any intestinal bug seemed to improve, his limbs were emaciated, and he had a distended stomach. I almost broke into tears while bathing him one night, because it dawned on me that he looked like a malnourished child in a third world country. Turns out, our 24 pound son had lost three pounds.

What was wrong? Disposition-wise, my husband and I could also tell that something wasn’t right with our son. Our typically good-natured, energetic little guy was irritable and lethargic. He’d take longer naps than usual and seemed to lack his usual “spunk.” But it was his physical manifestations that sent me to the pediatrician’s office.

Initially, our pediatrician thought it was temporary lactose intolerance, brought on by the rotavirus. He said that’s typical because the bug wipes out the lactase in the intestines, making it hard to digest dairy. Under that assumption, he put him on a lactose-free diet, which he suggested we follow for about two weeks. Brady got a bit better, but not entirely. Something else was going on.

I was talking with my mom on the phone one night, and, being a former nurse, she had some old medical reference books on hand. She started looking up various symptoms and stumbled upon a description of “Celiac Sprue”, which neither of us had heard of. Long story short, later that week I marched into the pediatrician’s office (I think this was the third trip since the symptoms first appeared), ready to ask him to test Brady for celiac disease. Fortunately for us, our pediatrician had been doing his own homework and made the same recommendation before we even brought it up.

Not surprisingly, Brady was diagnosed with celiac. What we observed after immediately putting him on a gluten-free diet confirmed his diagnosis. Within just a day or two of eliminating gluten from his diet, we noticed a change in his mood and energy level. A few days after that, his physical appearance seemed to improve.

It’s said that the average period of suffering with symptoms prior to a celiac diagnosis is 11 years for adults. But with children, you typically know right away that something is very wrong – like when our son lost more than 10 percent of his body weight in a matter of weeks.

Although celiac disease awareness has come a long way since Brady’s diagnosis more than 8 years ago, we still have a long way to go. Experts typically estimate that at least 87 percent of the 3 million or so people with celiac disease in the United States have yet to be diagnosed. It’s not uncommon for them to go from doctor to doctor and even to be told, “It’s all in your head.” Clearly, there are still way too many people unnecessarily suffering with no explanation for their symptoms.


Last Updated: August 16, 2018
Originally Published: June 4, 2013