Hi. It’s Alexis. I’ve shared with all of you the gluten incident that changed my life, as well as my story of my hospitalizations. Now I wanted to share with all of you how I am coping with the possibility that I might be one of two children who has refractory celiac disease.
When I was in the hospital in Maryland, my doctors came in and finally gave us an answer to what was making me sick. The doctors spoke to us about me possibly having refractory celiac disease. This is when your body stops responding to the gluten-free diet and your celiac symptoms come back. As we all know, I was so sick! We were relieved to finally have an answer other than someone saying “It’s constipation!” However, we had never heard of refractory celiac disease.
After meeting with the doctors in the hospital and before my discharge, they gave us a huge list of medications I was now on. We found out I had to go on a special diet of fresh foods - meats, fruits, vegetables, fish, rice and eggs. I cannot eat any processed foods. The diet is hard because I can’t eat all the foods that I like. I can’t eat out at restaurants anymore because it’s too dangerous for me. Going to birthday parties - which we had mastered with me coming with my own cooler filled with gluten-free pizza and a slice of gluten-free cake - is over. I just attended my friend’s birthday party with a cooler that had a turkey burger, white rice and, for dessert, fruit. At least when I had my gluten-free version of what the rest of the kids were eating I wasn’t totally different. Now I really stand out!
I have become a research study for the doctors. It’s scary to think that if I do have this rare form of celiac disease, that I am only the second child to have it. There is not much known about this disease, and it’s going to be all trial and error. I am under the best care of celiac research doctors, and so far they have taken good care of me. I go for an endoscopy in June for my official diagnosis. I hope and pray that when I have my endoscopy, my villi are standing nice and tall and are not flattened. If my villi are standing up nice and tall, that means I don’t have refractory celiac disease. It would mean that I have a severe case of celiac disease and had a bad gluten incident that messed up my body. I like to be unique, but not this way!
I am trying to think positive and raise awareness so no child will suffer like I am. Raising celiac awareness is important to me. I wanted to reach out to other celiac kids and tell my story. I want celiac kids to know that they are not alone. Getting my story out will raise awareness of the setbacks someone can have and getting the word out about refractory celiac disease. My story can teach doctors about what to look for when celiac patients are still having symptoms on a gluten-free diet. And it will hopefully teach restaurants and businesses the seriousness of taking precautions when cooking gluten-free. As I am living this nightmare, it’s important to realize that all it takes is one gluten mistake to change your life.
I have set goals for myself because although I have my bad moments each day of not feeling good, I need to feel like a normal kid. The first goal is that I wanted to get back into dance. I dance on a competition team and I love it! The girls are my dance team are my closest friends and are my support system. I reached that goal this week when I rehearsed with my dance team. It felt so good to dance again. When I dance, I forget about not feeling good. Plus, my doctor said that dancing is good for me socially, mentally and especially physically. He said it helps with the motility of my digestive tract. I was happy he told me I could dance again because he won’t let me go back to school this year. It’s too germy, he says!
I have been through so much over these last couple of months and I still have a long road ahead of me. But I am determined to take my life back. My next goal is to dance at my dance competition in a few weeks. I hope that I start feeling a little bit better each day and start getting my strength. I can’t wait to feel like “me” again!
Show your support!
Donate to Alexis' Fundraising Page