General Health and Snacking Tips with CF

Posted by: 
Steve Marquart
Nutrition Blog

When I was first diagnosed with CF, via the sweat test, I was roughly 130 pounds, as a six-foot tall, 26 year old. I couldn’t understand why. It turned out that I was battling CF without knowing and with no treatment plan. After a decade and a half, I’ve finally gotten to a comfortable spot with my treatments, diet, medications, life-balance, and the million other things that we constantly have to deal with. I’ve tried a number of different diets while trying to get to a healthy weight. We (or our guardians) are told when we are diagnosed that we need more calories, but what does that mean? We’re told a ton of things right off the bat that make no sense, because we have to change so many things about our lifestyle. At least that was the case for me. High calorie diet, but be smart about what you’re eating. The “high fat” part of it is tricky. No one would be healthy if their intake was 100% from fast food, we’ve seen that by watching Oversize Me. It was shocking, however it was enlightening when I embraced the disease as an opportunity to slay another dragon that’s after my gold, which in this case is my GI tract!   

Almost all of our physicians and dieticians all tell us that we need the high-calorie, high-fat diet to keep weight on, as a common issue with CF is being too thin. Fats will help us pack in calories with less gut-real-estate than things like starchy carbs and vegetables. Meats, cheeses, vegetables, grains. We want the fatty acids, vitamin E. I have gotten my vitamin levels all under control without the assistance of an extra ADEK tablet (oddly enough, with more focus on food and less on tablets, I have been pancreatic sufficient for many years and do not need to take enzyme supplements anymore – I am very lucky to not need that…until the time when I do). Balancing work/life and having to consider things like diet, medications (incl a daily multivitamin), therapies, etc. for me has been a huge challenge, but with time and effort, we can be healthy and pretty much “normal”! I use that term loosely.  It’s not a horrible thing to have that giant, messy cheeseburger beckoning us to eat it.  While we often have the problem of being too thin, occasionally we encounter being overweight.  Eating everything under the sun can be harmful.  I have the opposite issue. While I may never see that target weight, excess weight can and will making breathing more difficult since the fat cell buildup in the abdomen and thoracic cavities can constrict our airways and the muscles we need to inhale and exhale. I’ve learned that my FEV1 score is anywhere between 5 – 11 points higher when I am at my target weight (which is 190 for an active 5’11.9”er). That’s pretty significant!

Some of the new genetic modifiers, such as Trikafta, can create huge cravings, so finding balance and curbing the appetite takes some adjustment. Eventually our bodies will tell us what the right range of calories per day is good for us so listen to your tummy. The growls speak volumes. As the topic for this snippet is about diet and nutrition, I will only say that these genetic modifiers that have been researched and released are pretty awesome for our health, but potentially so is everything we eat.  We want to eat high calorie foods, but for some of us, the choices to eat healthier. I always look forward to the conversation with the dietician at the CF clinic.  I don’t know everything about the food and neither do they, so we have a 20-minute long chat about food and all parties in the room are left drooling. Our dieticians are underutilized resources. They are great absolutely brains to pick.

There are two major questions regarding food that we ask ourselves multiple times each day. ‘What do I want to eat?’ and ‘What should I eat?’ – the latter of which is when it becomes a numbers game. Planning the “shoulds” is the last question I ask myself every night in preparation for the next day. I don’t write out a meal plan (but I did for a while and it was helpful and oddly fun) and only give myself a general idea of what the following day’s rations will be.  Since I typically take a smaller, more frequent approach to eating, I plan out 3 snacks and 3 meals, most of which are balanced, kinda.  The actual fun part is pairing foods. Start with a base protein (or vegetable/carb/whateveryoulikemost) and build from there. I have a Yes/No-balance sheet where I have compiled a list from years of journaling my food entries, of course not every day and sometimes not even every month, but it helped me generate a way to eat and not feel terrible afterward. Sometimes the “Nos” become “Maybes” We have to watch out for that stuff. I highly recommend doing a food journal off and on for a couple of months whether or not you have a static or dynamic diet. The results can be quite revealing. There are hundreds of diets with names on them, but I am on a customized diet, which is just a combination of a bunch of other diets. Make your own through experimentation and practice patience frequently. Listen to your gut. While a great spoof song of Roxette, it’s also a great motto to get the nutrients that your body needs to stay healthy and active while also feeding your mind for the much-desired balance.  

A few other things that I do regarding nutrition are no different than things that folks without CF do. Talking with friends who have some kind of dietary restriction. Knowledge is power. Eating on a regular schedule is never a bad thing especially since we need to take a number of the medications with food in order for them to properly bind to our bodies.  For me, I set three ranges. Range 1 = breakfast between 6-8a w/ morning meds. Range 2 = lunch between 12-2. Range 3 = dinner between 6-8p. I trickle the snacks in between the meals by definition of “snack” but never snack before breakfast.  Since Each body is different. Everybody is different. One person’s diet/regimen will not work for everyone else.  I regularly take a few hours each week and research foods/diets, just to see what is out there. I drink a crazy amount of water. Hydration is good for our organs in general, so we can compliment our high-calorie intake with water-heavy foods like fruits and vegetables. Knowing what my allergies are helps significantly as well.  Peanut butter is a great filler for many reasons, unless you’re allergic like me! There are alternatives though and the resources listed in this article can help us find other things to eat when we run into a bind. Try things out, but use the journaling technique to master your nutrition.  I think about foods that will stick with me if I’m not going to be able to snack for an extended period of time.  Oatmeal, some beans, yogurt, avocado, eggs, and soups area great for this. I’m always snacking though, but try to stay away from the greasy ones as they usually have a special effect on our stools. There’s that balance again. We want high-cal fatty foods, but it is totally cool and surprisingly fun to create new dishes in the kitchen and experimenting to see what works for me. It is a CHALLENGE to keep happy and healthy! While there are just a few dozen-thousand of us CFers, millions of people struggle with nutrition every day, so it’s entirely normal to face obstacles to hurdle over.  Stay strong!

 

 

Help Others Live STRONGER and LONGER-

 

 

Steve Marquart lives in Akron, OH. He was diagnosed with CF at age twenty-six in 2006. He used to live a sedentary life, but after having a therapy/medication-free life up until the age of 26 with the life-altering disease, he decided to get active and take health seriously. Known to his friends of hiking, kayaking, playing tennis, working outdoors, playing music, caring for animals, or sharing random Jeopardy facts as “that guy that does stuff”, Steve is thankful for his friends, family, and medical care team to keep smiling, gritting through the worst of it and especially beaming through the best of it.

 

 

 

 

***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation*** 

 

***Please speak with your physician before making any changes to your CF management***

 

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