Sage is 17 years old and was diagnosed with celiac disease at 14 years old.
What symptoms were you or your child having before being diagnosed?
Over the next several weeks this cycle continued. She would feel hot, nauseated, have heartburn and feel generally miserable. We thought it was a reflux thing since I've got GERD so we started her on Prilosec but after a couple of weeks it still wasn't better. She was missing a lot of school and her grades were starting to suffer. On top of all of the GI complaints, she was now having constipation and diarrhea and her joints were really hurting her, especially her hips and knees. I took her to the doctor and he agreed that her symptoms seemed consistent with reflux and gave her more Prilosec and tested her for h. pylori, which turned out to be negative. He sent us on our way and said if she didn't feel better in a couple of weeks that he'd refer us to the pediatric GI doc. She missed more school and then she started having numbness in her hands and feet, difficulty concentrating and her teeth got really discolored. I knew that something was up and after 5 days called the doctor back and asked for the GI referral.
Any other family members diagnosed with celiac disease?
Yes - her mother and sister.
How has your life or your child's life changed since being diagnosed?
She feels so much better now that she is gluten free! Her only lingering symptom is joint pain. She is very diligent about being 100% gluten free! She is happy, well adjusted, smart, kind, cheerful, funny, driven, talented and amazing flutist. This year she competed in Distinguished Young Women where she was named 2nd runner up and was just named as the drum major for her high school marching band! She will be a senior next year and has set the lofty goal of becoming first chair in the All-State band.
Being that 83% of those with celiac disease are UNDIAGNOSED, what are some ways we can encourage more awareness of the disease and its multiple symptoms?
I think that it should become standard practice for all GI doctors to screen/biopsy for all patients who are having an EGD (upper endoscopy). They are already there and if this came into practice many more would be diagnosed. I would have been diagnosed 5 years sooner. That's a lot of misery and damage to my bowel I could have avoided.
Thank you mom for sharing Sage's story! I'm so happy to hear she is feeling so much better and ready for her Senior year of high school! Good luck Sage - it's sounds like you're a fighter and won't let anything stand in your way!
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