What a Nutrition Nut Has to Say About the CF Diet

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Something that I have heard continuously from friends all throughout my life is, “I wish I could eat as much as you and not gain weight!” Or something along those lines. I’d always laugh, but inside I was thinking, “You don’t want what I have…”

Yes, living with cystic fibrosis means I get to eat a lot. I eat all the time and I enjoy it very much! However, living with CF means it’s a struggle for me to gain weight. Sure, that may sound like heaven to you, but when you’re sick all of the time and have been made fun of for being “too thin”, it’s really not so great.

Having CF means I need a lot of extra calories and a balanced diet with added salt, fat, and protein. I also have pancreatic insufficiency, so I have to take synthetic pancreatic enzymes to help digest my food and absorb nutrients. I take 5-7 enzymes with my meals and 3-4 with high-calorie snacks depending on the fat content. It’s a struggle to remember to take my enzymes with food, but it’s something I have to work hard at in order to keep my weight on track. It’s a chore, and it’s one that I’m forced to do.

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Because I have pancreatic insufficiency, this also means I do not absorb my fat soluble vitamins (vitamins A, D, E and K). So, I have to take those in pill form as well, preferably with a high fat meal and with enzymes to make sure I absorb them.

I consider myself lucky because I have never had to have a tube feeding due to low energy or having a lot of trouble gaining weight. Tube feedings, or enteral nutrition, is a way for a person to get extra calories if they need it. For most CF patients, they receive feeds overnight through a tube that is inserted into their stomach called a PEG Tube (percutaneous endoscopic gastrostomy tube). This can provide an extra 1,000 to 2,000 calories and patients can still eat regular meals during the day.

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So as you can see, it’s a lot of work to have the diet of a cystic fibrosis patient. It’s not just about getting to eat whatever we want. There are also several times when I don’t have an appetite at all, and that’s when I know something is wrong. But I have to remember that food is a part of my treatment regimen.

Thankfully, I have found several ways to add calories, protein, and fat to my diet daily. One of my favorite snacks lately is 6 ounces of plain, Brown Cow yogurt with 1/2 cup of Nature Valley granola. The yogurt is full-fat (something that is rare) and provides me with 130 calories, 10 grams of fat and 6 grams of protein and is also a source of calcium. This is important because CF patients are at a higher risk for osteoporosis. The 1/2 cup of granola gives me 210 calories, 10 grams of protein, and 4.5 grams of total fat. When I eat these together for breakfast or a snack, that’s a total of 340 calories, almost 15 grams of fat and 16 grams of protein!

I also drink Carnation Instant Breakfast packets with 8 ounces of whole milk and I try to eat nut butters, ranch, and different kinds of cheeses with my fruits and vegetables. I also use butter a lot when I cook 🙂

If you’d like to read more about CF and nutrition and how to add calories to food, check out this link here.

Because nutrition is my major, it’s something that is constantly running through my mind. It’s definitely hard learning about how to help others eat right and lose weight when I’m trying to eat right and gain weight. It’s a challenge, but one that I’m definitely up for. I’m a nutrition nut. But that’s why I want to become a Registered Dietitian and help other CF patients to gain weight while still eating a balanced diet so they can live the life they want to live.

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4 thoughts on “What a Nutrition Nut Has to Say About the CF Diet

  1. Hi there, Jordan! It’s nice to “meet” you. I’ve added your blog to the CF Blogroll, and can’t wait to get to know you a little better! Good luck with your career! Nutrition is one of my passions, too.

  2. I am 30 with CF and got my degree in nutrition back in 2006. I did community nutrition for about four years and eventually went back to school to get my teaching credential. I am super passionate about nutrition even though it isn’t my career anymore. I am excited to follow your blog because I feel a little out of the loop when it comes to current nutrition trends.

    • Hi! I am SO excited for you to be following my blog! It’s so cool to meet another CFer with an interest in nutrition. I don’t feel like I know too much quite yet, but I hope to continue to gain knowledge! If I don’t get an Internship, I definitely want to continue my interest in nutrition by teaching as well. Best of luck to you and I hope you are doing well!

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