Our mission is to provide support and information and to ease the transition for newly diagnosed teens, as well as to create awareness for Celiac Disease.
Meet Valerie, the founder of The Celiac Saga
Valerie’s journey to a Celiac diagnosis spanned over nine years, three hospital systems, and two states. Her battle with with her health began when she was just in second grade. For years, she struggled with rare and unusual conditions – she was lucky to find doctors who could even manage them. But things really took a turn for the worse in the past two years. In the course of one year, she battled migraines, hyperthyroidism, a severe medication interaction, and a diagnosis of Postural Orthostatic Tachycardia Syndrome with only a couple of weeks in between each issue. During this time, Valerie firmly believed that there was a “catalyst” – an unidentified underlying issue that was causing her health to deteriorate so rapidly, but her symptoms were often dismissed as anxiety. Valerie was determined to find an answer to her mysterious illnesses, however, and after two trips to the Emergency Room and a drive to Nationwide Children’s Hospital in Columbus, Ohio, her suspicions were finally confirmed, and Valerie was diagnosed with an incredibly severe case of Celiac disease.
Valerie’s mission is to do everything in her power to make sure that no one will have to wait as long as she did for a diagnosis. By creating awareness for Celiac disease, it brings the disorder into the limelight and allows it to be more universally recognized as a possible answer to a child’s symptoms. Making this illness more public could greatly reduce the delay in diagnosis and shorten a child’s suffering. Valerie also wants to emphasize the importance of self-advocacy. You know your body better than anyone else, and if you truly believe something is wrong, always follow your instincts. Please never allow yourself to be silenced, especially in regards to your health.
Valerie is seventeen years old and a senior in high school who enjoys spending time with her sister and her friends and listening to music. She has an interest in physics, filmmaking, and cooking, and she hopes to become an advocate for Celiac awareness. Valerie’s other diagnoses include Primary Raynaud’s Syndrome, Postural Orthostatic Tachycardia Syndrome, Exercise/Cold induced Asthma, Recurrent Subacute Thyroiditis, Vocal Cord Dysfunction, Keratoglobus, and Fibromyalgia. Valerie is happy to talk about her experiences both with Celiac and her other chronic illnesses, and if you have any questions for her, please feel free to contact her here.