How we learned our son had Celiac Disease

Seemingly random complaints finally explained 

I am often asked how we learned our son had Celiac Disease. We figured it out in the most random way, but in the hope that telling our story will help other families, here’s what happened to us. At age 4, our youngest son was generally healthy. He met his pediatric milestones and was consistently in the 75th percentile for height and weight. He did however have some random complaints that seemed just a bit “off.” He constantly had a mouthful of canker sores. He seemed to have a low grade virus (i.e. cold) quite often. When he was tired, he said his legs hurt. He didn’t sleep well.  He had a long history of fluid buildup in his ears.
One day our ENT specialist listened to this litany of seemingly unrelated ailments and suggested we consult a sleep specialist. The sleep doctor diagnosed sleep apnea and suggested removing our son’s adenoids. He also told us our son had low ferritin levels (low iron stores), which could explain some of the issues. He suggested we start with iron supplements and see what happened.

It turned out that around the same time, my niece had also been taking iron supplements for low ferritin levels. My sister-in-law told us her doctor suggested my niece be tested for celiac disease if her iron levels did not improve. Celia-what???

Back in 2010 neither my husband nor I had even heard of celiac disease. We read up on it and learned that you have to eliminate all gluten-containing food from the diet: bread, pasta, pizza — in other words, all kid food.

I decided that my son could not have celiac. We hoped that his levels would improve with iron supplements, but they barely budged. So I called our pediatrician and asked him to run the blood panel for celiac disease. He said he was doubtful: our son was growing fine, and had not complained of stomach issues (failure-to-thrive and digestive issues are widely perceived as the “classic” symptoms of celiac in children). Nonetheless, the pediatrician agreed to run the panel if it was what I really wanted.

A week later, he called and told us that not only did our son appear to have celiac, his numbers were off the charts! So off we went to the Celiac Disease Center at Columbia University, where they scheduled an endoscopy, which confirmed the diagnosis.

And so a few days before his 5th birthday, my son began eating a 100% gluten-free diet. Just two to three weeks later, he looked up and said “Mommy, my tummy doesn’t hurt anymore.” I felt my heart in my throat. “Did your tummy hurt you?” I asked. “All the time.” he said. He had rarely complained of stomach aches. I’ve come to believe it must have been a low level pain that he thought everyone had.

Fast forward six years: My son follows a strict gluten-free diet. He is a healthy, thriving pre-teen. His iron levels are normal. He only gets canker sores if he accidentally gets “gluten-ed.” His leg pains are rare. He no longer has any ear issues. He has not had his adenoids removed, and he is a solid sleeper.

In short, all his “complaints” went away.

There are several takeaways from all of this for our family. First, celiac disease has many symptoms. We learned that left untreated, intestinal villi exposed to gluten will break down, and the body stops properly absorbing nutrients. That means celiac can manifest itself in many ways. That makes it a challenging disease to diagnose.

Second, trust your gut (pun intended)! Whether it concerns yours or your children’s health, when something feels “off,” pursue it. Ask questions, talk to friends, get medical attention and don’t give up until you’ve solved the puzzle.

Let me know if you have any questions. Better yet, tell me your story.

4 thoughts on “How we learned our son had Celiac Disease

  1. Omg thank you so much for your story! I’ve been scratching my head with my 2 boys symptoms for years! Doctors just say it’s normal…. growing pains (leg pains that keep him up at night), low energy, slower growth, irritability, sudden rashes, enlarged tonsils for 1.5 yrs, diarrhea, constipation, sore tummies, distended tummies, excessive ear wax, snoring since born, “mom everything hurts”, often sick, brittle nails, slow weight gain, on the small side, no nail growth, light skin, ….. but i never adressed ALL the symptoms as a list with any doctors…. just individually, whatever was prominent.

    Calling Doc Tomorrow. We’re all getting tested.

    Thank you

  2. This was very helpful. I was recently and finally diagnosed with celiac disease at 53, and was looking back at all my childhood health issues. It was like a list of celiac symptoms. The stomach pain, failure to thrive, body aches, I had my tonsils pulled because they had become so infected by tonsillitis, constant iron deficient anemia, no matter how many supplements and low vitamin d despite spending hours and hours in the sun. I went gluten free five years ago, because I suspected celiac, but my new doctor ordered blood work that confirmed it even after years of being gluten free. That’s why this article is so important, my intestines still haven’t recovered from 48 years of gluten, but knowing means my kids can act sooner.

    1. Thank you and thanks for sharing your story! Missed or delayed celiac diagnosis is (was?) all too common. I am hopeful that each year there is more awareness about celiac disease and earlier diagnoses, so that people can heal. Hoping you continue to heal too!

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