Cystic Fibrosis and Food by Lilly Guilbeau

Cystic fibrosis (CF) makes life, including having a family and job that you love, even enjoying food, incredibly challenging.  Cystic fibrosis also makes life far too short.  But life with CF can be lived with gusto.  As award winning sports journalist Brian Guilbeau said, "I don't want people to look at me and see CF."  Please join me in welcoming Brian's daughter, guest blogger and CF spokeswoman Lilly Guilbeau. - BYH

***

Cystic fibrosis is an inherited disease that affects the lungs and digestive system. A lot of kids and adults have CF. When you have CF, thick mucus gets in to your lungs and can cause serious lung infections. The mucus also blocks the pancreas from doing its job and doesn’t let in all of the nutrients from your food.

Diet is very important for people with CF.  A high calorie and high fat diet is important for normal growth and development in children and offers adults a way to maintain optimal health. Extra calories help give CF patients more energy for breathing. So, it is important for people with CF to plan several snacks throughout the day for energy.

Almost everyone with CF needs to take enzymes, pills that allow all of the nutrients to be absorbed into the body.  The main functions for enzymes are:         

·         To digest carbohydrates, protein and fat (the three parts of food that supply calories)

·         To help with weight gain

·         To promote nutrient absorption

Enzymes should be taken before all meals and snacks, milk, breast milk, formula, and nutritional supplements. If CF patients don’t take their enzymes, this is what could happen:

·         Poor weight gain despite a good (sometimes ravenous) appetite

·         Frequent, loose and/or large bowel movements

·         Foul-smelling bowel movements

·         Mucus or oil in the bowel movement

·         Excessive gas and/or stomach pain

·         Distention or bloating.

To lead a healthier life, it is important for people with CF to be aware of their diet and nutrition. Here are some recipes* to follow.

Sweet Potato Muffins

One 29 oz can sweet potatoes, drained and mashed

Two 7.5 oz packages corn muffin mix

3/4 cup whole milk

2 large eggs

2 Tbsp sugar

1 Tbsp vanilla extract

1 tsp ground cinnamon

1 tsp ground nutmeg

Preheat oven to 400° F.  Mix sweet potatoes, sugar, eggs, vanilla and spices. Add corn muffin mix and milk. Stir until smooth. Grease muffin tins. Bake at 400 degrees for 20-25 minutes.  Makes 12 muffins.

Carrot Raisin Salad

2 cups raisins

1.5 cup grated carrots

2 apples with skin, cored and cut into pieces

Two 8 oz cans crushed pineapple, drained

1 Tbsp lemon juice

1/2 cup mayonnaise

Combine all ingredients. Serves 9.

Wheat Germ Zucchini Bread

1 1/2 cups sugar

2 cups all purpose flour

1 cup wheat germ

1 tsp baking soda

1/2 tsp baking powder

1/2 cup chopped nuts

1 cup applesauce

2 Tbsp canola oil

3 large eggs

2 cups grated zucchini

2 tsp vanilla

Preheat oven to 350° F.  Combine sugar, flour, wheat germ, baking soda, baking powder and nuts in a medium bowl and set aside. In a large bowl, combine the applesauce, oil, eggs, zucchini and vanilla. Add dry ingredients and stir until just blended. Grease and flour two 8-by-4 inch bread pans. Divide the batter between the two. Bake at 350 degrees for 45 minutes to 1 hour.

Makes 2 loaves of 12 slices each.

*Recipes and information courtesy of the Cystic Fibrosis Foundation. For more information, visit www.cff.org.

Brian Guilbeau: award winning sports journalist, devoted husband and father



Lilly at her dad's garden

The garden stone

                                                                    

                                                                                                                              

Lilly speaking at a CF Walk

Lilly modeling at the Candyland
fashion show fundraiser

Lilly Guilbeau: CF spokeswoman, freelance multimedia journalist, proud daughter

About Lilly Gulbeau

Lilly Guilbeau is a fifth grade honor student from Lake Charles, Louisiana. Lilly witnessed her father, Brian Guilbeau, live a happy and meaningful life with cystic fibrosis (CF). After a double lung transplant in 2004 and a single lung re-transplant in 2009, Brian, who was an award winning sportswriter, died in 2009 at the age of 38. Since that time, Lilly has dedicated much of her time to raising funds and awareness to fight CF. She has served as a statewide spokesperson for the Cystic Fibrosis Foundation. She has appeared in various media campaigns for the organization, spoken to groups about CF and raised thousands of dollars for the cause.  Her efforts were recognized in 2011 when she was named the regional winner of the Kohl’s Cares Scholarship Program. She was chosen for the honor from more than 37,000 nominees nationally.

In addition to her work with the Cystic Fibrosis Foundation, Lilly also volunteers in the Children’s Department at the local women’s shelter, where she leads various programs for the children. She also has volunteered with the local soup kitchen preparing and serving food, and rings the bell for the Salvation Army.  Lilly hosts her own monthly web show called Community Chat where she highlights volunteerism and the arts from a child's perspective.

Lilly also loves to pursue her creative side.  She is a member of the district honor chorus and also takes voice lessons to grow her talent.  She also recently started guitar lessons. Lilly has acted in local commercials and participated in theatre and comedy improvisation workshops.  She has modeled for print campaigns and fashion shows.  She also enjoys writing, drawing, hanging out with her friends and participating in church activities.

Visit Lilly’s Links:

Brian Guilbeau – Breathe Deep

Community Chat with Lilly Guilbeau

Cystic Fibrosis Foundation