Perhaps the most important lesson I’ve learned is to accept the help you need.
“You tested positive for Celiac. You need start a gluten free diet and we’ll test you again in about 6 months to a year.
I imagine that’s a typical diagnosis conversation for a lot of Celiac patients. It was simple and straightforward but I still felt blindsided. I needed help. I had the support of my family, my husband and children…but I needed the experts to guide me through this. During my web search, I found The Kogan Celiac Center at Barnabas Health Ambulatory Care Center. I saw a video of Michelle Pasia, MPH, RDN, the program’s coordinator, speaking on Celiac disease. She calmly broke down what we all know is a very complex treatment plan into steps that felt less intimidating. I knew instantly she was someone who could help me navigate this disease.
Thankfully, I was able to book an appointment for the following week. Michelle was as kind, informed, and calming in person as she was on video. And more importantly, she seemed to recognize that I was in the midst of both a physical and mental battle. She eased me into my new lifestyle – we reviewed safe foods and brands, she taught me how to read labels and recognize ingredients to avoid, and how to live with non-Celiacs (whom ideally shouldn’t remove gluten). She helped me understand that it’s not about elimination per se, but more about healthy substitutions.
I continued my journey feeling a little more confident and a little less isolated and hopeless. I started to learn the brands and foods that I like, stuck to a mostly clean-eating type diet, and even started to enjoy cooking.
I was doing well, that is, until I wasn’t. In February, rumors began of COVID-19 making its way around the world. It was only a matter of time before we saw cases in the US. As a person whose immune system is in an overactive state (I was only diagnosed in December), I began to fear what COVID could mean for myself and others battling an invisible illness.
Around March, I started to suffer from abdominal pains every single day. My symptoms seemed to activate regardless of what I ate. I was extremely nervous and quite frankly, the doctor’s office was the last place I wanted to visit and my GI’s office was closed. I reached out to Michelle and to my delight, she was able to teleconference with me.
We reviewed my symptoms and Michelle developed a personalized dietary response plan. I kept a food journal and, within a few weeks, we were able to identify the root cause of my issues. With some simple food eliminations, I felt almost immediately better. We’ve met repeatedly since then to work through the reintroduction of foods.
I’ve learned so much these past 7 months. First, treatment can sometimes be trial and error and that’s okay. Patience is critical during the healing process. Second, self-care goes a long way. Work out, indulge on occasion, and give yourself a break when mistakes happen. The only option is to learn from them and keep one foot in front of the other.
Perhaps the most important lesson I’ve learned is to accept the help you need. Celiac disease is complicated and it can make you feel alone. But help is available, and I can honestly say that meeting with the team at The Kogan Celiac Center at Barnabas Health Ambulatory Care Center has helped me immensely in the healing process.”
-Shannon DePinto