It was October 2003 during the wildfires of southern California when Jack became ill. San Diego was covered in ash, and since I was pregnant again, I took him to my sister’s house in Colorado to breathe healthier air. On the trip he developed severe intestinal symptoms. He literally went from being healthy one day to not being able to digest food. His symptoms intensified beyond explanation. He couldn’t speak yet, so he cried quiet tears that have no noise, just sadness.
His stomach had grown to a distended, uncomfortable size, and neighbors commented on how he looked “pregnant.” His normal high energy was replaced with a lethargic state and there were large red circles under his eyes. He was malnourished and his body was rebelling against food, although no one knew why. It became some mystery illness that no one could understand.
After five months of devastating vomiting and diarrhea up to 10 times a day, my husband and I found ourselves in the emergency room with pending surgery on our 21- month-old son. I was nine months pregnant now with our second son and in early labor. They knew Jack was obstructed, as he screamed in pain for over four hours. They put us in one of the “private” emergency rooms generally reserved for isolated traumas that have a “life or death” connotation.
It took four nurses to hold him down while a fifth nurse inserted a naso-gastric (NG) tube, a plastic tube that is pushed through the nose down into the stomach, with no anesthetic—along with an IV. He screamed so loud and cried so much that he appeared to run out of tears. In terror, he eventually passed some of what was causing the blockage.
When the nurses finally let go of him, they draped a blanket over his “Calvin and Hobbes” hospital gown and went to consult with doctors. Jack was just sitting there, staring at us with those sad brown eyes. He wouldn’t have been able to speak if he wanted to with the NG tube in, so we just held his hand and comforted him the best we could. My husband and I couldn’t look at each other for fear of making the other one cry in front of him. We read to him and sang to pass the time. We were there 18 hours.
The morning we were discharged, a young pediatric gastroenterologist examined Jack. She suggested we take a good look at his diet and check back with her in two weeks because she wanted to run some more tests. We went home still not knowing what was causing all this pain. It was a difficult time for us all.
A week later, I gave birth to our second son. Jack was still sick and it had escalated to vomiting every time he ate. After four days of being home with the new baby and with Jack being sick all day, I called the pediatric GI and begged her nurse to see us right away. She saw us the next day and Jack promptly threw up all over the examining room.
Finally, the doctor pulled up a chair in front of us and said calmly, “I’d like to run some blood work on your son and test him for something called ‘celiac disease’.” She continued to say more but I completely tuned out at the shock that he might have an incurable autoimmune disease that is genetic. No one in my family or my husband’s had celiac disease to our knowledge. The blood work came back positive and further testing confirmed the results.
It was the moment of truth. I sat on the couch at home and realized I couldn’t cry about the circumstances Jack would face in life. I picked up a folded piece of paper the nurse had given me. It was an out-of-date list of what seemed like the only 20 things Jack could now eat.
Celiac disease is an autoimmune disease. In simple terms, the body can’t digest gluten. Gluten is found in wheat, rye, barley, and triticale. Any amount of gluten acts as a poison to Jack and makes him sick. His intestine, we were told, would be able to fully heal on a gluten free diet, but as an autoimmune disease, it would be a lifelong battle to stay healthy. The best news was that he was diagnosed early and it was controlled by diet. The tough part was where to start.
On the piece of paper the nurse had handwritten the letters “R.O.C.K.” and next to it she wrote “Danna Korn” and her phone number. She said it was a woman who founded a support group years ago called “Raising Our Celiac Kids” and had written several books. Not knowing exactly what I would say, I picked up the phone and called her. She had a happy, upbeat voice. She had been there herself. Her son had been diagnosed in a similar situation years ago and he was now a teenager and thriving.
She directed me to the books she had written and told me that there were plenty of foods Jack could eat and that the list I held in my hand was outdated. That phone call changed my life and Jack’s. I immediately changed my attitude toward his illness. Danna had said that some day soon I wouldn’t even think about his diet because it would just be a way of life. I bought her books, bought a bread maker for the gluten-free bread mixes, and never looked back.
Jack has been gluten-free for several years now and is thriving, happy, and healthy. One day I was watching Jack draw and thought it might be fun to have a small art benefit with artwork from children with celiac disease. The next thing I knew my husband and I hosted the first San Diego Celiac Art Benefit. The Gluten Free Foundation became our new mission, and we incorporated as a nonprofit and acquired a tax exempt 501(c)(3) status in 2006. This was our way of giving back and something we could do together to raise awareness and help find a cure or a solution. We continue to work closely with Danna and other organizations that share a similar interest.
So how does Jack deal with his gluten-free diet? I don’t know if he remembers the emergency room trauma or how sick gluten made him feel. All I know is he is the one who approached this positively from day one. He has never once complained about his diet restrictions and tells me not only does he not feel like he’s missing anything, but that I’m the greatest cook in the world. What more could a mother ask for?
Karen Fine, Co-Founder and Executive Director of Gluten Free Foundation