When a child already has a complicated medical history, a possible gluten sensitivity is often on the bottom of the treatment priority ladder. This is what happened in regard to our son, Hunter’s gluten sensitivity diagnosis. In the summer of 2005 extensive medical testing revealed Hunter had hydrocephalus, a condition where cerebral fluid is building up in the brain, putting pressure on it. In Hunter’s case, his third and fourth ventricles were literally flooded. The proposed solution to this was a shunt. When the shunt was surgically implanted in August, a subsequent MRI revealed a techtal glioma at the top of his brain stem about the size of a walnut.
Following the shunt surgery, which did relieve the pressure on his brain, Hunter began intensive physical therapy, occupational therapy and speech therapy. He was literally learning how to walk all over again, learning to control fine motor coordination, learning how to talk beyond the thirty word vocabulary he had. So when he was still struggling with potty training, it was put on a back burner in the face of everything else that was going on in his little life.
Then, in February of 2006, Hunter began radiation treatment, receiving a series of 28 treatments over a period of 6 weeks. We hoped, when his tumor began shrinking, that the potty training might be a cognitive problem, and would improve over time as all of his gross and fine motor skills improved. To a certain extent, there was some improvement. However, the bowel issues were never totally resolved.
Because Hunter had already been diagnosed as lactose intolerant, we were already modifying his diet. My husband and I, on our own, were also modifying the amount of fruit and juice Hunter consumed because more than one small glass of juice a day, or a second helping of fruit could result in three or four dirty pull-ups a day. The school was working with us, fully aware of his already complicated medical history. Most three and four year olds don’t come to preschool having already been treated for cancer.
The bowel issues did moderately improve, and we did transition from pull-ups to training pants, but still, Hunter continued to have at least one, and often two and three accidents a week. We were packing changes of clothes for him to take to school.
Then in August of 2007 Hunter’s shunt failed. Once again we were headed for brain surgery, this time an Endoscopic Third Ventriculostomy. This amounted to a laser surgery where a natural hole was drilled in his brain for the cerebral fluid to drain through. This was a monumental success. However, while he was in the hospital, the poor little guy had diarrhea around the clock, and I again initiated the conversation about the chronic diarrhea. It didn’t really go anywhere though. Hunter started kindergarten a week following this second surgery.
Except for the extra change of clothes, little was being done about the diarrhea problem he and I were dealing with. Then I discovered I had colon cancer. Hunter’s bowel issues, once again were put on the back burner while I began treatments. Oddly enough, Hunter was the one person on the planet earth who personally had empathy and identified with the problems associated with my colon cancer and reconstructive surgery, my chemo and my reaction to the drugs I was receiving. I remember one time telling my husband, “I just can’t do this! You don’t know what I’m going through.”
Hunter was standing there with his seven year old maturity saying, “But I do, Mom. You can do this. You have to.” And I did. It still brings tears to my eyes, because I know he really did have personal first hand experience with what I was going through. His diarrhea just had another cause.
Finally, in the fall of 2010, during an appointment with an endocrinologist at University of Iowa Hospitals, I initiated the conversation about Hunter’s diarrhea and accidents again. He was now 8 years old, and I was genuinely concerned about the social issues involved with a little boy having accidents at school. This time, the doctor really listened.
It was me who brought up celiac disease or at least a food sensitivity of some kind that might be causing it. Dr. Tansey agreed with me, it was time to do a little testing to see if there was a medical cause. The first test results revealed that, although Hunter didn’t have full-blown celiac disease, he did have a sensitivity to gluten.
Mike and I rolled our eyes, because in searching for solutions ourselves, we had recently tried a whole-grain diet. Hunter’s symptoms had immediately become drastically worse. Now we had a good clue why.
Fortunately, for us, we’ve been advised we do not have to supervise every bite of food that goes in Hunter’s mouth. A little wheat, barley or rye isn’t going to create any crisis, so he’s still eating school lunches, but we definitely backed off of the whole-grain foods we were cooking at home. We read labels now, and we shop the gluten-free shelves at the grocery store. Some eating establishments are offering gluten-free items on their menus, like gluten-free pizza crust.
We’re also eating a lot more oats, rice, corn and potatoes. Tapioca is also a good substitute for diet starches. Living on a gluten-free diet is doable. So now we have a child who is lactose intolerant with a gluten sensitivity but, “We can do it. We have to.”