Celiac Disease Diagnosis Anniversary

I remember opening the letter dated 11/4/03 and having no idea what my doctor meant by "Celiac antibodies all high!! We need to discuss diet changes." I read it three times, stunned.

Potentially, I could have been diagnosed with Celiac Disease my Junior year of high school. I remember sitting in the Writing Lab with two of my friends pointing out the rash on my hands. I just thought it was from "sensitive skin,"and I had used a lotion that didn't agree with my epidermis. My Junior year was also when I started feeling different. The changes I felt were vague and hard to describe. I didn't feel energized after eating. I felt like my blood sugar would just drop for no reason from time to time. (Really, what was probably happening was my body couldn't absorb nutrients and was suffering.) I just never felt great. Being the overachiever I was, I thought my extracurricular activities and study habits made me tired all the time. Never feeling good became part of my life.

I tried to cut down on carbs, more because I was always unhappy with my weight than because I thought carbs linked to my immune function. I started to see a nutritionist, the wife of my history professor. She had me monitor my blood sugar, and log my food intake. Nothing we did impacted how I physically felt. She counseled me on my home life and thought I was borderline anorexic. True, I didn't eat well and I had body image issues, but so do most teenagers. In hind sight, I the gluten-containing food made me feel worse every time I ate. For me, eating was toxic.

My Freshman year of college at Loyola New Orleans, I was in the bathroom all the time. Stomach upset was a daily part of my life. I continued to never feel great. My weight stayed the same, even though I worked out a 3-4 times a week. I napped for 20-30 minutes almost every day. I was tired. My concentration was poor, but I had been fighting ADD symptoms since high school. Sometime during Spring semester, I systematically eliminated foods and discovered I was lactose intolerant. Cutting out milk products in my diet made an improvement but only solved a small part of my problems.

My Sophomore year of college I moved back in with dad to start pre-nursing classes. I felt listless and unmotivated, but decided it was related to missing my Loyola friends and sorority sisters, trudging through science classes, and working through the newness of my parents' divorce. When I started having hot flashes, an endocrindonologic side effect of the untreated Celiac Di ease, I made my first visit to Dr. Delcher. He ordered my labs, and made my diagnosis.

The first year I felt incredibly better. I had no idea how horrible I had been feeling for so many years until I changed my diet. I lost lost weight from eating better, exercising more often, and not being bloated all the time. I still was sick off and on. The rash on my hands flared. I suffered Reynaud's in the winter. I did not understand that I still had not cut out all of the gluten in my life. I got a few other opinions, and landed back in Dr. D's office in tears. Why did I still have symptoms?

A year later, I started seeing Bernadette Saviano, the G-F nutrition guru (and Celiac herself). My life took a second turn for the better. She taught me the "secrets" of a completely G-F diet and the tricky non-G-F ingredients in foods. Bernadette made me list of supplements to meet my needs- my damaged cilia (a side-effect of eating gluten in Celiac's Disease) could not absorb everything I needed. I never knew I could feel so great. I was not sick all the time. I did not need so many naps. I could concentrate on school work. I learned to cook. I learned to love food. I learned to live.

According to Dr. D and Bernadette, it takes about 5 years of G-F living for your body to fully recuperate. I have reached my 5 year anniversary, and I've truly never felt better. Celiac Disease no longer is an obscure condition; almost everyone I talk to about G-F "knows someone" who shares my lifestyle. Not only can I find G-F products in the "normal" grocery store, stores label shelves to help me locate the G-F products faster. I am surrounded by supportive family and friends who go with me on restaurant adventures, try their hands at G-F baking, make sure I'm accommodated. I am not afraid of running into gluten contamination when I try something new at home or at a restaurant. I do not feel like I am missing out on anything. I am happy. I am healthy.