I remember rubbing my belly while pregnant with my little girl, telling her that her daddy and I would take care of her no matter what. So imagine my frustration when we weren’t able to help her constipation. Around May 2010 we switched pediatricians. During our first visit, the new pediatrician said she was concerned about her distended belly. Long story short, by July 2010 we had a biopsy-confirmed diagnosis of celiac disease. This is amazing, given that Jillian isn’t even 2 years old.
Jillian was born at 7 lbs., and while I was breastfeeding she kept gaining weight. When we switched over to baby food, Jillian had a hard time adjusting. More often than not, we gave her mashed up “big people” food. Her weight gain slowed, but her belly grew, and she started having a difficult time having a bowel movement. Jillian has always been a happy girl, and I suppose because of this I never really thought to push the “big” belly and/or bathroom issue with our pediatrician. However, when we took her to see a specialist and he suggested that she was holding it, I knew that wasn’t right. My husband Scott and I actually had a few arguments about trusting a medical degree vs. a mother’s intuition. We started her on a laxative, which helped, but I was certain something else was going on.
Initially, I thought it might be an allergy to a milk protein. But by our 2nd visit to our new pediatrician, she ordered blood work to test for celiac. I laughed it off, confident Jillian didn’t have celiac disease. I have a few friends who have celiac and Jillian’s symptoms looked nothing like theirs, plus Scott and I didn’t (and still don’t) have any signs of celiac.
After Jillian’s diagnosis, our usual lifestyle came to a sudden halt. Not only was I a few weeks pregnant and feeling lousy, suddenly we had to be vigilant of everything we were giving to our daughter. Everyone kept telling me they were “so sorry” about Jillian, and this upset me. I would respond, “The doctor didn’t say my daughter only has a few weeks to live. There is no need to be sorry.” I hated thinking that people are going to feel sorry for Jillian her whole life.
Friends said, “Wow, gluten-free can be a pain in the neck” or “Gluten-free is expensive, huh?” Those two statements are becoming my reality. A gluten-free diet is what will keep Jillian healthy - I don’t want anyone to be sorry about that - but I was having difficulty getting used to my new grocery bill, the need to go to several groceries stores for gluten-free options and, most of all, the lack of knowledge about celiac, even though thousands of people are diagnosed with the disease.
Within two weeks of diagnosis, I became obsessed with gluten-free. Shortly after starting a gluten-free diet, Jillian began to respond wonderfully, but I was losing sleep. I couldn’t stop worrying that Jillian was ingesting gluten because I wasn’t diligent enough or that while at daycare she would “accidentally” ingest gluten.
We are 3 months into Jillian’s celiac diagnosis, and things are getting a little easier. Jillian’s belly is “normal” and she is having regular, non-painful, bowel movements. We just took a family vacation to Ocean City, NJ, and Jillian had a wonderful time. We found some gluten-free options on the boardwalk and cooked a few dinners at home.
Life is different than it was just a few months ago, but for the better. My little girl is healthy! I wish the world was better educated about celiac disease. Hopefully, by sharing our story with anyone who will listen, I am helping to bring awareness to the community.