As Josh is still a minor, his story is told by his mother, Lisa.
Describe life prior to diagnosis:
My son always complained of stomach aches after the age of 5. Prior to that, he would get sick without warning.
We’re more of a meat and potatoes family, so this didn’t occur daily. Sometimes he would eat pizza and not get sick, so it was very confusing and hard to pinpoint the source of the trouble.
Who made the diagnosis?
He was diagnosed about six years ago; our pediatrician gave my son a blood test first. That was positive. He then scheduled an upper endoscopy with a pediatric gastroenterologist. It took us about five years to figure out what was wrong with Josh.
How did you adjust to life after a celiac disease diagnosis?
No one in our family has ever had a food restriction so it was a complete shock.
Being a mom, my goal was to get him healthy and start reading labels (which Josh is now even better than me at). It took us a year to get his numbers to where they needed to be. I made our house gluten-free, changed out my pans, cast iron and baking items to create a safe house for him.
I have now started a side business selling gluten-free baked goods after spending a lot of time, recipes and mishaps to get the right taste and texture so we both can enjoy baked goods together! Don’t despair, it can be done! I would never have found this passion if it wasn’t for my son’s diagnosis!
Do you believe anything could have sped up your diagnosis? If so, please explain:
I believe if I or the pediatrician was more informed or the pediatrician perhaps would have seen some red flags. I think doctors are more aware of it now and can diagnose more quickly. It all boils down to awareness!
Is there anything else you want to add?
As a parent, you want to fix it. It was scary when I found out. I didn’t know what steps to take and the internet helped me more than any doctor could at that time. Now we have Facebook and Instagram. So many others can see their symptoms are not the norm. It is so helpful to learn about other’s paths and know there are others out there and that dietary changes are not difficult. We can change the perception that living with celiac disease is cumbersome. It isn’t! And we need more restaurants that are totally gluten-free and dedicated gluten-free bakeries!
