As Ellen is still a minor, her story is told by her parents.
Describe your child’s life prior to diagnosis:
Ellen had horrible stomach pains and would scream for hours at a time. She also had joint pain in her knees that made her limp.
How long did it take for your child to get diagnosed since your first symptoms and what (if any) challenges did you face along the way?
It took months to get Ellen diagnosed. She often had painful episodes when her pediatrician’s office was closed, so we ended up in after hours care or urgent care several times. They all prescribed Miralax and sent us on our way.
Every doctor we saw on weekdays said that she’s just constipated, but I knew something else was going on. I knew I had to have her seen while she was in severe pain, because none of the doctors believed me when I explained the severity of her suffering. Her regular pediatrician was able to see her in the middle of one of these painful attacks and ran a battery of bloodwork tests. Her numbers for celiac disease were off the charts.
Do you believe anything could have sped up your child’s diagnosis?
Yes! I believe that the blood tests could have been ordered sooner. I also believe that doctors should be better about listening to parents who live with and observe their children on a daily basis.
How has life changed after diagnosis?
As a parent, I had to re-learn everything I thought I knew about food and cooking and baking in order to keep my child safe. I also had to become a very vocal advocate for her, as celiac disease is often not taken seriously and/or people have no idea what foods contain gluten. They understand the dangers of cross-contact even less.
