I talked last week with someone from a project I hope to be soon involved with. As we were talking, I told my story of how my little man was diagnosed. I'm grateful this was not years of struggling to figure out what was wrong with him since so many others are misdiagnosed. It was still an ordeal and a process, one which will continue to have it's ups and downs, but hopeful he will grow up happy and healthy with few bad times.
When Kid X was born he weighed 7 pounds. Great and healthy weight. However the first week he went down to about 5 pounds 11 oz. The pediatrician thought I must either not be feeding him correctly or there was something wrong with my breast milk. So I was referred to a lactation consultant. My breast milk analysis was perfect, my feeding times and log were spot on. I left with a, "You're doing everything right." But no answers. Kid X continued to be severely underweight and new symptoms started at age 1 month. Projectile vomiting. I didn't worry, he was eating so much and the pediatrician said it was just GERD, he prescribed prilosec. Although I was very reluctant to start something like this, I decided to try. There was no relief in vomiting and very loose stools started.
Around 3 months, Kid X broke out in a strange, blistering rash on his face. I attributed it to something I was eating, so I backed off all dairy and breads. I ate basic veggies, fruits and little spices to my meals. The rash cleared up. Meanwhile the vomiting continued. Kid X slept a lot. By three months he was sleeping all night with only one feeding. It worried me but he was up during the day with naps and eating well. This was when his first ear infection happened and I noticed that his eyes were turning in. He focused intensely on his hand for hours at a time.
The next 7 months were nothing but more ear infections, stronger antibiotics, more GERD medications, constant vomiting, diarrhea and frequent doctors visits. X was still below the tenth percentile in weight. The staring at the hand worried me at first but then the pediatric ophthalmologist assured me this was just due to poor vision and lazy eye. The problem could be corrected with eye patching to train the weak muscles in the eye. Kid X was eating solid food, many didn't seem to agree with him, anytime he was put down on his back, coughing and projectile vomiting would occur. By one year, X was still not walking but trying his hardest to balance and stand. He was very clumsy and uncoordinated. The year ended with ear tube surgery as the constant infections were becoming harder to treat. I hoped this would help his balance and maybe stop some of the other undesirable problems. I was tired of being embarrassed when out at others homes when a "super diaper blow out" would occur or have to apologize for a massive vomiting accident.
Despite the surgery, it still took another round of antibiotics to clear the infection in his ears. Finally Kid X stated walking at about 14 months. Very clumsily, but it was a relief since this skill seemed a little late to come compared with the other kids developmental progress. Constant vomiting and lose stools, trips to the eye doctor continued until about 15 months. X had eye surgery to help his lazy eye. It was successful. My pediatrician left the practice and I was forced to find a new one. Kid X was still low in weight but eating tons of food, bread seemed to be the only thing that he would eat. I think it calmed his tummy. My new pediatrician suggested something might be wrong since GERD symptoms should be gone by now. She suggested trying no dairy for 2 weeks. This slightly improved the vomiting but not much. Next she said try no wheat for two weeks, but before we started, she did a blood test for gluten sensitivity. One week in this trial and I had an entire day of no vomiting. By two weeks, only one episode at bedtime. During this time I got a call saying that 2 labs came back off the charts and one was normal. We finally had an answer. My pediatrician gave a diagnosis of gluten sensitivity and gluten ataxia because of his poor balance. She encouraged me to get a biopsy for an actual celiac disease diagnosis. I politely declined. 2 surgeries in a year was enough. Plus he would have to eat gluten for up to a month. The diet was working, I wasn't going back to having a sick child. He was also starting to know what made his tummy hurt. My pediatrician also thought his lazy eye may have been a symptom of the neurological damage gluten can do, but couldn't say this was entirely the case. X was doing great, thriving. He still had some vomiting mainly at night when put down to rest for the night. I attribute this to weak gag reflex, it runs on my husband side of the family. In a few short months after diagnosis, he gained weight back to the normal range. Right before age two, Kid X had a horrible sinus infection. Afterwards, the disease took a different turn and vomiting, loose stools and horrible bloating returned.
So that's how a mom found out that her son was gluten sensitive and more than likely, celiac. May is Celiac Awareness Month. I want to share my story so that if you are struggling with strange symptoms, maybe you will be inspired to continue your search for a diagnosis and also try the gluten free lifestyle. In my next post, I'll continue the story of the new and unusual symptom that Kid X displayed and how I figured out what was wrong.