Ask The Advocates: CF Diet Management
We asked our advocates, "What practices have you applied to CF diet management?" Here's what we heard!
Using a G-tube to bulk up my CF diet
Response from Cheriz K
I focus on gaining weight by making sure I eat at least 3 meals and lots of snacks throughout the day. From the age of 12 to 29, I used to need a stomach tube to feed me an additional 1000 calories a night. I said goodbye to my stomach tube after 17 years, mostly thanks to medications, lifestyle changes, and a little bit of luck.
Now, I work a little harder on my meals. I try to stick with healthy fats for my Symdeko (it needs to be taken with a high amount of fat). Usually, this means nuts or avocados, and occasionally yogurt or cheese.
I do tend to limit my daily dairy, grease, and processed foods, and I avoid caffeine and carbonated beverages. I drink mostly Gatorade and eat lots of fish, chicken, beef, pasta, potatoes, veggies, and fresh fruit. We don’t eat out much at all, because if we do then I end up with stomach aches and digestion problems. By eating at home and making meals from scratch I can control what goes into my food and make sure I hit calorie goals.
High fats, low sugar
Response from Kenny Boutot
Consistency and regimen. I’ve found success in developing habits around my airway clearance techniques and taking medications, so when it came to adjusting my diet for CF, I used the same tactics. I found meals that were high in fat and protein calories and had a low impact on my blood sugar levels, and repeat those as much as I can.
I have the same breakfast and lunch most days, and only really change up my dinner, while still trying to make that meal fit the same calorie content categories. My one unhealthy, high sugar vice is my daily chocolate milk intake. I’ll sacrifice anything else in my diet, but that one I don’t think I’ll ever give up. I like to at least reward myself with that bit of goodness for my discipline and diligence.
Response from Janeil Whitworth
Beginning Trikafta has really changed my life when it comes to CF diet management. I have gained 12 pounds since starting the medication. (YAY!) Prior to Trikafta, I really struggled with weight gain no matter what I ate. It was incredibly frustrating, and I was considering getting a feeding tube placed.
Now that the stress to be constantly eating has been lifted a bit, I am practicing my own CF version of intuitive eating. I eat when I am hungry while choosing foods that sound delicious and filling. Thankfully, I really enjoy a massive variety of healthy foods, but I never feel guilty about picking up fast food or eating a huge bowl of ice cream. Life is too short and food is to be enjoyed!
Encouraging a responsible CF diet
Response from Misty Roussa
Our son has CF, and his diet is very loose. Whenever he says that he is hungry, I feel like I need to jump on that since he rarely wants to eat. There are a handful of foods that he likes the best. His current favorite food is salmon, so we know every restaurant that offers it and prepares it how he likes.
We do implement healthy foods and have the "junk food vs. healthy food" talk often. However, since his appetite is so minuscule, we do go above and beyond to get a good meal in. I do want to point out that as he gets older, we are shifting a lot of the food responsibility to him. We won't always be around to make food suggestions to him and to remind him that gaining weight is so important.
Fat and protein
Response from Megan Barlow
To be honest, I don’t do a ton of CF diet management. I mostly eat what I want, when I want, while trying to be conscious of making sure I am eating more calories and foods that are higher in fat and protein.
That being said, since I started Trikafta almost 2 months ago, I have gained 8 (ish) pounds. So now this has me wondering, will I finally have to do a little more diet management?
Response from Nicole Driscoll
Ever since I could remember, my doctor always preached a high-calorie diet for CF. When I was younger it didn't really mean much to me, other than the fact that I was always offered ice cream, milkshakes, and, quite frankly, whatever I wanted! I was never much of a sweet eater and preferred hearty meals as opposed to snacking all day long. I was also pretty active growing up, which meant the need to consume even more calories than normal to ensure I kept my weight up.
Since becoming an adult (and really taking full ownership of my diet and food shopping) I have made very conscious decisions to ensure I am consuming a higher-than-normal calorie diet. Its always a catch 22, though - because I know I need to gain and maintain weight, but if I consume too much it often results in bloating and feeling quite uncomfortable.
I have never been one to eat many small meals throughout the day - always been a 3 meal type of gal. If there's one thing I do consistently, though, is try to take my enzymes prior to eating and drinking plenty of water throughout any given day.
How do you manage your CF diet?
How do you manage your or a loved ones CF diet? Join our Dietary Tips Forum to share your thoughts!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?