What symptoms were you or your child having before being diagnosed?
In the spring of fourth grade, I had my first upper endoscopy (the medical examination necessary for a celiac diagnosis); however, after examining my esophagus, the doctor pulled the tube out and diagnosed me with a severe case of acid reflex due to the erosion on the side of my esophagus lining. Due to this negligence, I suffered for four years with a plethora of celiac symptoms: acid reflex; muscle fatigue; anxiety; anemia; eczema; constipation/diarrhea; headaches; abdominal pain and bloating; bone and joint pain; and delayed puberty. ALL of which disappeared after going gluten-free.
Any other family members diagnosed with celiac disease?
My father and my older brother, Jacob, both have celiac disease. We were all diagnosed at the same time five years ago. My dad actually suffered with undiagnosed celiac disease (migraines, nauseous, joint pain) for about 30 years, and he wasn’t tested until we found that celiac disease was genetic. So I always make it known that my acute pain saved his life. ;)
How has your life or your child's life changed since being diagnosed?
My celiac diagnosis has allowed me to be more patient with others. Pre-diagnosis I admittedly did not have a lot of hardships in my life. However, struggling with undiagnosed celiac disease and then adapting to the social, emotional, and financial burdens of celiac disease has allowed me to sympathize with others more. Now I realize that everyone is struggling with something. It makes it easier to connect with others, especially if they are going through a rough patch.
What advice would you offer to a parent who’s child was diagnosed with celiac disease?
Try and find local charities that help the newly diagnosed! Cutting Costs for Celiacs (WI) and the University of Chicago (IL) offer baskets to newly diagnosed celiac-patients (within the last twelve months) so patients can see which products are safe for them. The U of Chicago offers the basket to all legal US residents; whereas Cutting Costs for Celiacs only offers baskets to Wisconsin residents. Additionally, I recommend joining Facebook groups for Celiac kids/parents so you can ask questions to a base of supportive parents in the first few months. Having gluten-free connections is really nice after diagnosis–even five years after diagnosis. Finally, see if there are gluten-free events in your area! Gluten-free get together events are extremely popular, especially in the summer months, so don’t miss out.
Lexie, you are embracing your autoimmune disease and helping others along the way, what a wonderful example you are! I'm wishing you much success with Cutting Costs for Celiacs, helping low income families and those newly diagnosed in Wisconsin can definitely use your support!
For more on Lexie's nonprofit organization, visit: Cutting Costs for Celiacs