• Katie

How We Got a Celiac Disease Diagnosis for Our Child

If 2020 wasn't enough stress, it's also the year that we got a celiac disease diagnosis for my oldest son. We didn't see it coming and we have been learning so much from all of this and I want to share how we got the diagnosis. According to Beyond Celiac, it is estimated that up to 83% of Americans who have celiac disease are undiagnosed or misdiagnosed with other conditions and 6-10 years is the average time a person waits to be correctly diagnosed. Pretty crazy, right?!


It all started with my son just seeming off. I thought maybe he was depressed ( because 2020 does that to you ) and you know that parental instinct when your child isn't acting how they typically do. He didn't want to play as much, he didn't seem his happy-go-lucky self, and he just looked sick to me. His belly was also extremely bloated. Like it looked painful kind of bloated, but he always said his tummy didn't hurt when asked. He also started to seem constipated and then the final straw was passing a white stool.


We immediately scheduled an appointment with our pediatrician. She wasn't immediately concerned because his weight had not changed but when we mentioned the white stool she wanted to order tests. White stool can be a sign of liver problems and she wanted to rule that out. We were sent to the lab of our Children's Hospital for blood draws, ultrasound, and x-ray to try to rule things out. He was such a trooper!


At 5pm that Friday we got a call from his doctor that the ultrasound came back fine but the x-ray did show an excessive back up of stool. She said some of his other numbers were off but it could be lab error but we were still waiting for the few other tests that were ordered. Over the weekend, we did a clean out ( hellooooo ex-lax and miralax ) to see if that helped. It didn't seem to but we kind of thought that was it. A week later his doctor called again to let us know his celiac panel was back and it was positive. This would also explain the other numbers in the blood work that seemed strange.

With this news we were sent to a GI Specialist who told us the next step was an endoscopy with biopsy to confirm the diagnosis. This was right before Christmas and they wanted to get him in immediately because he was showing signs of liver damage so we were scheduled the next day. We were super thankful because you have to keep eating gluten until this is done so the results are accurate and we wanted to change his diet as soon as possible. It was a very quick procedure but just with the photos they took they were 99% sure it was celiac and said to go ahead and start the strict gluten free diet while we wait for the biopsy results. We met with a dietician while he recovered after the procedure.


He's had follow up visits and more blood draws to keep an eye on everything. His Iron and Vitamin D levels were very low and the have him on a supplement while his body heals. It can take 6+ months for his body to heal and it's so hard to be patient!! But even a few weeks in we've seen his personality come back and his body lost a lot of the bloat. We are so thankful for a fast diagnosis and that we are now on the road to recovery.