Tori Kenyon
When I was diagnosed in 2009 at the age of 15 with celiac disease, I was told to adhere to a strict, gluten-free diet and I would be well on my way to feeling great. It’s been 5 years and I find myself never having found that “I feel great” moment. I am a celiac still struggling, but have learned along the way that, unfortunately, I am not the only one.
Almost everyone I encountered always said how amazing he or she felt after eating gluten-free and I couldn’t help but think I was missing something because I didn’t feel amazing, I felt anything but amazing even with a 100% gluten-free diet. I have struggled with chronic stomach pains, extreme fatigue, vision blurring, leg and muscle pains, constipation, and the list goes on.
I was not nearly as bad as I was prior to diagnosis but I have reached a point in my life where for the first time I don’t remember what it felt like before 2009 when I was healthy and could eat whatever, whenever, and wherever and not think twice. I don’t even expect to feel good after eating food anymore.
Same old story, going back and forth to doctors appointments every 4 months or so, repeating to my doctor that I still feel lousy, having blood tests run, and nothing further. I’ve reached a breaking point that I think all those with celiac disease hit at some point when we just struggle to keep on fighting for our health because day after day we just experience the same old pain.
As a college student, I’ve realized my biggest culprit is cross-contamination, as I believe is a culprit for everyone else still experiencing symptoms. I am now on my own, forced to find food to eat, but never truly knowing how it was prepared and whether or not after one bite I would be ingesting the enemy known as “a crumb of gluten.”
An endoscopy in October 2014 revealed my small intestine is just as inflamed as it was when I was diagnosed; the doctor performing the procedure told my mom that if he had to guess he would’ve assumed it was my first endoscopy and that I was undiagnosed with celiac disease – but no, I am 5 years into this disease.
There has been a lot of attention in the media about gluten-free, but never celiac disease. The disease behind the diet is often pushed to the side, and instead jokes are made and people assume this fad diet is to lose weight. Cross-contamination is due to a lack of vigilance and awareness, people not understanding the severity one crumb does to the bodies of those with celiac disease.
After one crumb is ingested, it takes a minimum of 3-6 months for our intestine to fully heal. That one crumb is why I am constantly curled up in bed, too sick to move, too weak to exercise, too lethargic to make it to class some days.
The worst part is that when we are contaminated, our intestine stops absorbing all nutrients, thus, even eating an apple or banana (naturally gluten-free) leaves me with stomach pain because my body rejects just about everything. It’s a never-ending cycle that I hope and pray will end soon.
Awareness is needed for the disease behind this diet, specifically a need for vigilance of cross-contamination across restaurants, schools, college campuses, businesses, and manufacturers. That awareness starts with organizations like the Celiac Disease Foundation and those who have dedicated their time to being a voice for the Celiac community.
I am constantly inspired to keep fighting because of the incredible stories shared through these outlets. The close-knit support from the Celiac Disease Foundation is the reason so many are able to get through, and I think to have an organization that cares so deeply and reaches out to members of the community in hopes to raise awareness through personal stories is a blessing, and makes all the difference in our lives.
The more people share, the more the word gets out. I hope to one day finally have that “I feel great” moment again, and I hope every member of the Celiac community gets that feeling as well. Education is key to help those still struggling, but it’s so great to know I am not alone in the struggle, as I have read countless stories that mimic my own.
At 20 years old, I never believed I would be an advocate for something, but I am turning my struggle into hope for others by reaching out and emphasizing the impact cross-contamination can have on the life of a celiac; it has certainly changed my life, and I aim to eliminate that one crumb one day of education at a time.
Gluten-free may be a fad diet for some, but for people with celiac disease, gluten-free is our only lifeline.