“Obstacles don’t have to stop you. If you run into a wall, don’t turn around and give up. Figure out how to climb it, go through it, or work around it!”……Michael Jordan
“Why does she seem so small compared to her classmates and friends?” This is a question I continued to ask my husband as I compared her to peers at school. Every time I visited my pediatrician for yearly visits, my daughter was always at the fifth percentile for height and the third through fifth percentile for weight. My Dr. assured me that she was fine, growing steadily at her own pace. I told my doctor many times that I was worried about her growth, and their answer was “well you are petite, she will be like you”. By 6th grade signs of puberty had begun. I started to get nervous, knowing that with females, there is always a growing window once puberty has started. My husband and I decided to get a second opinion. I then made an appointment with an endocrinologist. This doctor ran a bunch of blood tests to check for thyroid disease, vitamin deficiencies and Celiac disease.
A few days later the phone rang! My heart dropped when I heard the doctor say “All results came back fine, EXCEPT…” My daughter’s blood test for celiac disease came back positive and she now needed to have an endoscopy performed to confirm the diagnosis. I had heard of Celiac disease but knew very little about it. My husband and I decided to see a very well known physician in the field. We made an appointment with Dr. Alessio Fasano at the Celiac Center at University of Maryland Medical Center. Everything was happening so fast. I was going through the motions of making appointments and still couldn’t believe that all this time something was really wrong!!
The endoscopy later confirmed that my daughter’s slow growth was caused by celiac disease. It was hard to believe because other than her growth and some moodiness, she really didn’t suffer with any significant symptoms that would lead us to this diagnosis.
Just to give a little background, Celiac disease is an autoimmune digestive disorder that occurs in reaction to gluten, a protein found in wheat, barley, rye, and sometimes oats. The body’s immune system reacts to the gluten and causes damage to the intestine. The symptoms may vary among individuals, ranging from no symptoms, few or mild, to severe symptoms. Currently, it is reported that 1 in 133 Americans has this disorder and needs to follow a gluten-free diet. Essentially, we were told that if our daughter remains on a gluten-free diet for life, her intestine will heal and she will grow to her full potential.
After many tears and sleepless nights, we pulled ourselves together. We began reading books and websites, educating ourselves on the disease, diet, and life changes that we were about to embark upon. We cleaned our kitchen to rid everything of lurking crumbs. We trashed all gluten containing products and spent hours reading labels and shopping for new products. We found it easier to keep our house gluten-free so that everyone would be eating the same way and our daughter would feel comfortable in her home environment.
Six months later, our daughter has gained six pounds and has grown 2 ½ inches. She has adjusted well to her new diet and lifestyle. There is a tremendous amount of planning involved when we are out and about. We have three children who are involved in lots of sports and after school activities. I often pack meals and need to stay prepared with extra food. The flip side to this is that we have really improved our lifestyle of healthy living. We eat more fruits and vegetables and whole grains. We still eat out at restaurants, but usually need to do some research to see whether there is a gluten free menu and that there are no cross contamination issues.
I am sharing my story with the hope that people would advocate for their children and themselves. Go with your intuition when you have a feeling that something may be wrong. I was worried about my daughter’s growth for a long time before I decided to take it upon myself to go further. I have learned and grown so much from this experience. My family has really pulled together to create our new “normal.” It is especially heartwarming to see the way my two younger daughters have supported their sister by staying gluten free in our home. They are eating all new foods that I am cooking without complaints. I have recently set up a support group that will begin in November in the Fairfax, VA community with others who have children with celiac or gluten sensitivity. You can learn so much from others if you just initiate and reach out! I look forward to sharing stories, experiences and of course recipes!
I would like to share some places our family has visited over the past few months and around DC that offer safe gluten free options. Also, I have included a few new dessert recipes that have become a favorite at our house!
Restaurants: Wildfire, Chipotle, P.F Changs, Glory Days, Bonefish, Café Sano, Big Bowl, Edibles Incredible, Pinkberry, Sweet Frog, Hershey Park (has a gluten free dining in the park), Royal Caribbean cruise (awesome experience, prepared all foods gluten free).
FLOURLESS ALMOND BUTTER CHOCOLATE CHIP COOKIES
1 cup brown sugar
1 cup chocolate chips
1 cup Creamy almond butter or peanut butter
1 tsp baking soda
1 tsp vanilla
Pre heat oven to 350, mix all ingredients together. With a teaspoon spoon onto cookie sheet and bake for about 7 minutes. If you like, you can add walnuts, cranberries etc to vary the recipe!
Peanut butter pudding pie
1 tub cool whip
1 gluten free pie crust (buy in grocery store Wegmans or whole foods)
1 package of Jell-O pudding
1 cup peanut butter
¾ cup powdered sugar
Cook pie crust as directed. Mix pudding as directed on package. Mix powdered sugar and peanut butter together until crumbly. Place half peanut butter crumbles into pie shell, fill with pudding. Layer all but 2 tablespoons of crumble over the pudding. Top with whipped cream and remaining crumble to garnish. Serve chilled.
1 cup oil
2 cups gluten free flour
1 tsp baking powder
2 tsp vanilla
½ lbs chopped walnuts
1 jar cherries drained
Pre heat oven 350, stir eggs, add sugar, oil, baking powder and vanilla. Stir in 1 cup of gluten free flour at a time. Add cherries and walnuts. Put on a cookie sheet in shape of meat loaf when loaf is light tan cut into slices and turn on side to brown.