My name is Alexis and I am 9 years old. I was diagnosed with celiac disease when I was 2 years old. For almost 8 years now, I have been on a strict gluten-free diet. Up until recently, I was feeling great and most importantly, I was healthy!
This summer, I went to Mexico to a hotel in the Riviera Maya that told my parents they can accommodate gluten-free cooking with no problems. My second meal there, they offered to make me gluten-free pancakes. I ate the whole plate of pancakes. Within an hour after eating, I became violently ill. I had to be rushed by ambulance to a Mexican hospital. Ever since that gluten incident, I haven’t been feeling good. I started getting all sorts of celiac symptoms such as nausea, diarrhea, vomiting, joint pains, abdominal pains, mouth sores, headaches and a weird blotchy rash that comes and goes. My mom called my gastroentologist and said I needed to be seen immediately.
In December, I was hospitalized for 8 LONG days! The doctors did a lot of testing, but really found nothing. The only thing they did see was that at the top of my small intestine there was inflammation. I was sent home with no answers and I felt sick through the holidays. It was the worst feeling ever.
I was hospitalized once again in January. It was my first day back to school after the break and I felt so sick they rushed me to the nurse’s office. I ended up vomiting and my parents rushed me back to the hospital. I got admitted into the hospital again for another 4 days. This was the worst experience! The doctor who was on rounds that week thought I was suffering from constipation and the nausea was in my head. It was a frustrating time for me and my family because we knew something was really wrong!
During that time, my mom contacted the world renowned celiac researcher, Dr. Alessio Fasano. My mom asked him if he would try to help me. He wanted my gastroentologist to do one last test, the endoscopic capsule. This is a huge pill that has a camera in it and it takes pictures of your digestive tract. They ended up finding nothing again. My mom contacted Dr. Fasano and told him nothing was found, and he said he would see me in Maryland the following week. Two days before my appointment with Dr. Fasano, I started vomiting and had horrible abdominal pain. My parents had to call 911 and an ambulance took me back to the hospital. It was so scary. In the emergency room, I couldn’t even hold down a sip of water. My mom called Dr. Fasano and he said to have me transferred down to the University of Maryland Hospital in Baltimore. I was transferred and spent 11 days there.
During my 3rd hospitalization in Maryland, I was the sickest I have ever been. I was down 8 lbs. and I couldn’t hold down any food or water. I was hooked up to an IV to give me fluids and medication. Dr. Fasano and his entire GI team took on my case. They even brought in rheumatologists and infectious disease doctors to help figure out what was going on with me. The first week I was there was so scary because I was so sick. I came very close to getting a feeding tube.
The doctors performed an endoscopy on me. They took a lot of biopsies. What they discovered was that my celiac disease symptoms were back and I also had gastritis and esophagitis. As of right now, the preliminary finding is that I might have Refractory Celiac Disease. This is when your body is unresponsive to the gluten-free diet. There are 2 types of Refractory Celiac Disease: Type 1 and Type 2. When you have Type 1, you have to go on a fresh food diet eating only fresh meat, vegetables, fruit, fish and rice. You go off all processed foods. This diet is named after my doctor: The Fasano Diet. Type 2 can lead to lymphoma. We had a scary few days with not knowing which one I might have. But at the end of my stay at the hospital, the doctors came in with a smile and said it’s not Type 2. We were all so happy.
I went back this past Wednesday for a follow up visit with Dr. Fasano. He said I need to continue on this diet until my next endoscopy. It is going to be scheduled in the beginning of June. This endoscopy will determine if I have Refractory Celiac Disease or if I am a super-sensitive celiac. If I officially have it, I will be only the second child to have this form of the disease. There is not much known about Refractory Celiac Disease. I’m not sure how to feel about this. I like to be unique, but not this way!
Since this all happened, my life has changed a lot. I’m not in school because it’s too dangerous for me to go back with all the germs. One sickness can put me back in the hospital. I am on nine medications that are very strong. I can’t eat any of my favorite gluten-free foods anymore. I miss pizza, pasta, cookies and M&Ms. The diet I am on is hard, but I’m handling it. My mom has become quite the cook now and makes the most delicious French fries from an old recipe of my great grandfather’s (minus the frying).
Papa Frank’s Fabulous French Fries
To feed a family of 4:
Preheat oven to 350 degrees (you can increase the temperature at cook for a lesser time).
Peel 6 baked potatoes and cut them into fries.
Spray the pans with olive oil.
Lay the fries out on the pan to bake. Before putting them in the oven, spray the fries with olive oil again and put salt on them.
Bake for 30 minutes or until they are crispy.
I’m going to be blogging about my experience with all of you. I have a long battle ahead of me, but I am a fighter. I hope that you will all follow my blog. It’s important for all of us celiac kids to know that you are not alone - there are many of us out there. The other thing I’ve learned is that it is so important to keep raising awareness for this disease because there is still so much unknown.
Until next week…… Alexis