Meet Tracy, an eager participant in our 2020 Virtual Turkey Trot Cross-Country Challenge who was diagnosed with celiac disease just over a year ago and has already surpassed her fundraising goal! We invite you to read her celiac journey and why funding research is so important to her. Part of her story may sound familiar to you or a loved one, reminding us that we’re all in this together, unified in our mission to ultimately find a cure. If you want to make an impact and share your story, please register for our 2020 Virtual Turkey Trot Cross-Country Challenge today.
“A couple months prior to my diagnosis, I had participated in a month-long program where I had eliminated certain foods from my diet, one of which was gluten. During that month I felt better than I had in years (I now know why!). After the month was over, I returned to my normal diet. One morning, about a month after resuming my normal diet, I ate a scone for breakfast which quickly lead to abdominal pain and bloating which then progressed to diarrhea that continued for the next two weeks. I think my body literally just one day had had enough, now knowing how great sans gluten can feel. I went in to see my physician and got an infectious workup and also tried eliminating dairy from my diet as other members of my family have lactose intolerance. Although briefly mentioned as a possibility, a celiac disease diagnosis was quickly dismissed, as the abrupt nature of how my symptoms presented was not the classic manifestation of the disease. The infectious workup was negative, and no improvement was seen with eliminating dairy. After another week of diarrhea, I asked my physician to please check my celiac antibodies – I mainly wanted to rule that out as a potential cause. I knew my life had changed completely and forever when my antibody levels came back sky-high. Subsequent genetic testing and small bowel biopsies would confirm the diagnosis I already knew to be true, I had celiac disease. Looking back now over the past 10+ years, I can identify certain instances in which I ate a meal and afterwards felt so horrible but didn’t know why. It all makes sense now, knowing that I had undiagnosed celiac disease for all those years. I have spent the past year mourning the loss of my former food life. I was a huge lover of breads and pastas, and I have literally gone through the stages of grief about the loss of being able to eat these foods. Fast forward a year, and I’ve come to a place of acceptance with the diet I am destined to eat for the rest of my life and have learned that pasta made from chickpeas isn’t all that bad.
I am grateful to have a disease that can be treated by diet but have learned that cross-contamination is a legitimate and serious concern, which is one of many reasons why helping fund celiac disease research is so important to me. Funding research to address all aspects of celiac disease – from prevention (which is extremely interesting to me – why does one person develop celiac disease but another within similar genetics and lifestyle doesn’t? Is there a tipping point that could be identified in which intervention before that point could prevent the development of celiac disease?) – to treatment options (wouldn’t it be nice to be able to take a pill like patients with lactose intolerance do that would prevent the damage caused by gluten ingestion? No more worrying about cross-contamination!) – to hopefully, one day, a cure. There has been definite progress in the understanding of this disease, but in order to keep moving forward, celiac disease needs to be recognized as the serious autoimmune disease that it is and receive appropriately dedicated research funds.”