As odd as it is to say, I have a child with a life-long autoimmune disease. Yet, I am incredibly relieved and grateful for this diagnosis.
My nine year old daughter has had chronic abdominal pain and GI issues for years. Almost three years ago we ran a battery of tests looking for answers. We treated the symptoms but never found a cause, blaming her pickiness and poor diet.
After six months of insomnia, personality changes, and behavior issues, I was looking for any answers. We started occupational therapy and now food therapy, we began meeting with a counselor and I asked for blood work. After two rounds of blood work and an endoscopy we finally had a name.
Celiac Disease
A name that explained every single symptom and wasn’t anywhere on our (or her doctor’s) radar.
Her condition is treatable and manageable and I’ve been encouraged that she may very well be happier and healthier in the days ahead. I know that there is still so much to learn. We still struggle to make sure she has a balanced diet. The diagnosis hasn’t magically changed her taste buds. We battle weekly, if not daily over food.
Our grocery bill has gone up by 50%. I’ve quickly discovered that it’s nearly impossible to find a nut free and gluten free granola bar that resembles anything more than a glorified cookie. Most store bought gluten free bread contains no fiber or protein, as is also true of many gluten free products.
We have a found, after much trial and error, gluten free bread and pasta that she will eat. We are still fighting to get more fruits and veggies into her diet. Since her diagnosis she has also decided that she is a vegetarian.
It’s honestly exhausting. I’m micromanaging the diet and bowel functions of an almost nine year old while still trying to fulfill the rest of my responsibilities as a mother of a not yet potty trained two and a half year old, and a high energy six year with sensory integration difficulties. Sometimes I don’t know how I’ll keep going this way, but I know I must.
Not knowing was worse. Looking at my daughter with her dark circles, high anxiety, daily tantrums and worrying that whatever was wrong couldn’t be fixed or treated. Click To TweetNot knowing was worse. Looking at my daughter with her dark circles, high anxiety, daily tantrums and worrying that whatever was wrong couldn’t be fixed or treated. When the doctor called with the final results of the endoscopy I was so relieved. That was not the reaction I was expecting. (I think I had already done a lot of my grieving after the initial blood work results). I was more afraid the doctor was going to say the biopsy was negative and that she didn’t have any answers.
I spent months, years nearly, looking for answers for how to help this child. This may not have been my preference, but I am supremely grateful to finally have one. I can relish the days that she smiles and seems herself again, and try to be patient when she has another meltdown. It is a pleasure to see her climbing trees and frolicking in the sun instead of always wanting to be alone in her room.
I have my share of discouragements when we battle over eating something besides gluten free toast and jam or when she weeps about the unfairness of having this life long condition. She still wrestles with the reality that she can never eat so many familiar foods again, but we are working hard to find acceptable substitutes and expand her palate over all.
I never thought I’d pray in thankfulness that my daughter has a life long disease, but I do. Because now I can help her, and because for the first time in a long time, I can have hope.
