As Brooklyn is a minor, her story is told by her mother, Kristi.
Describe your child’s life prior to diagnosis:
My daughter was very sick prior to her diagnosis. She was not gaining weight at the rate she should have been. At one year old she was in the 4th percentile for height and weight, weighing only 15 pounds.
How did you come to know (or suspect) that your child has celiac disease?
I suspected my daughter had celiac disease when she was just a year old, because she was not growing properly and looked extremely malnourished. You could see her ribs, and her arms and legs were so tiny. She always had bags under her eyes as well as a swollen stomach. Almost every time she ate she had diarrhea.
How long did it take for your child to get diagnosed since their first symptoms and what (if any) challenges did you face along the way?
It took about six months to get the official diagnosis. We got her diagnosis at 18 months old, and at the time she weighed only 18 pounds.
My daughter’s pediatrician felt that my daughter was just a small and petite person and was fine. She did not think anything was wrong with my daughter, but I knew the struggles we faced every day with her.
Do you believe anything could have sped up your child’s diagnosis? If so, please explain:
I wish I would have pushed her pediatrician to refer us to a specialist sooner. I took it into my own hands and put Brooklyn on a gluten-free diet before her diagnosis,* and she seemed to improve, but I wanted to know for sure that was the issue. We were eventually referred to a specialist and the testing began.
*This is not recommended, because you must be eating gluten before being tested for celiac disease. Going gluten-free before testing can cause incorrect results.
Describe you and your child’s experience living with celiac disease:
We experience some struggles with my daughter having celiac disease. Eating out is tough at times because we don’t know for sure if what my daughter is eating is gluten-free. Gluten-free groceries are also twice the price of the normal, gluten versions, so that has been hard as well.
Seeing my daughter thrive and become such a happier little girl makes it all worth it though.
Is there anything else you’d like to add to your story?
My daughter is now three years old and has come so far since transitioning to a gluten-free diet. She now weighs a healthy 30 pounds and has grown significantly taller!
I appreciate everything that Beyond Celiac is doing and hope that one day there is a cure! We are so thankful for all the research that has been done and continues to be done daily.
