My Cystic Fibrosis Diet

Earlier this week I got an email from a reader asking me whether or not I adhere to a diet plan, and if so, what does it look like?

If you know me personally, you know I am anything but a foodie – I have the palate of a 6 year old and I’m really pretty skinny – so this goes into the category of “questions I never thought I would get.”

For most of my life I have looked at food with some disdain. I have never been the kind of person to be like, “oh let’s go try that new place in town, I can’t wait to eat [insert weird foreign cuisine].”

There’s my g-tube!

Since I had my feeding tube placed in 2011, though, I have become more conscious about my dietary choices. I’m not going to sit here and tell you that I have a diet that would work for most people (read: people who don’t have CF), because that simply isn’t true. Thanks to my compromised digestive tract and pancreatic insufficiency, I focus on protein and fats – the goal is to overeat in those categories and hope that my enzyme tablets do the trick to digest most of it. Beyond that I know there are certain food groups to avoid because they can lead to increased mucus production or other issues, like sugar. I’m probably losing the battle against sugar, but I’m definitely consuming way less than I was a few years ago. I also try to work in as many veggies and fruits as I can (albeit through my feeding tube, but we’ll get to that soon).

I’m not one of those people who totally fears GMO’s, or processed foods, but I will say that if there is an organic option in front of me, I will favor it over something that may look a little like it was designed in a laboratory. Ultimately I’ve discovered, through the ups and downs of my health, that nutrition works hand-in-hand with the rest of our treatments for CF.

About a year ago, I wrote out some recipes that I utilize with the help of my feeding tube, but to this point I have neglected to share what my diet looks like in a typical week, so here we go.

Breakfast 

The first meal of the day really isn’t that exciting for me. I usually wake up pretty full from my overnight g-tube feeds, so if I do eat something in the morning with my meds (I find that taking meds on a full stomach is almost necessary to avoid any unpleasant side effects), it’ll be a muffin (what makes a muffin different from a cake? They have the same set of ingredients) or something along those lines. On days when I may not have done an overnight g-tube feed (maybe once or twice a week), I’ll go for eggs in the morning, usually in the form of an egg sandwich. Two fried eggs and bacon on a roll is my go-to breakfast sandwich. Ideally I’d drink a glass of whole milk with it, but I’m typically taking meds that don’t go well with dairy, so I’ll drink a Gatorade in the morning. If I am cheating, or feel like I really need to gain some weight for whatever reason, I’ll go with a waffle covered in butter, with a side of bacon. Cereal or eggs are my go-to choices if I’m on the go or traveling, but always with a side of bacon. I love bacon. I’m not a communist.

Smoothie

Since breakfast really isn’t much of a priority for me, I have found the best way for me to generate calories in the morning is via my (really my mom’s doing) homemade smoothie. I “drink” one of these just about every day a little before noon once the unpleasantness of being full from my overnight feed has passed. I say “drink” because I use my feeding tube to gulp it down – like I said, I have the pallet of a 6 year old, so it’s just easiest for me. The shake is always evolving, but centered around healthy fats and protein. I’m not a true calorie counter, but I like to get between 700-1200 calories with this bad boy. The size of the shake is totally dependent on how hungry I am – did I do my feed the night before, was it a day when I ate breakfast? It gets most of its calories from avocados and olive oil (I use my feeding tube, I’m not tasting this shit). I’ll also put a couple scoops of protein powder in. Other than those main ingredients, I load it up with probiotics, coconut water, vitamins, greens, a banana, garlic and cayenne pepper. You can check out the above link to see a recipe that I wrote out last year. Like I said, it’s always evolving and one of those things, that needs to change to keep up with my lifestyle.

Lunch 

Lunch is just a time for me to get some calories going. Admittedly, I do not look at lunch as a time to prioritize nutrition. I rely on a rotating carousel of deli sandwiches and chips (I’m a ham & swiss guy), burgers or dogs, a cheesesteak, pizza or something of the like. I’ve never really loved lunch, so it’s definitely something I can improve upon. I also usually drink a soda with lunch. I know, I know, Soda is THE DEVIL, but the way I see it, I am so unbelievably disciplined in every other facet of life, that I allow myself this “luxury.” All things considered, a Coke is probably the least toxic thing I’m putting into my body when you look at the broader spectrum of medications and antibiotics anyway. Let me live. 

Afternoon protein shake

So this part of my diet is ALWAYS changing. In my recipe blog post, I was trying out whey protein isolate. That stuff was great, it was just a lot of protein. Now, I’m going with a feeding tube product, called Kate Farms: Core Essential Peptide. It’s a high calorie feeding tube product that is about 500 calories. It’s super easy to digest, and works great for me since I just jam it down my feeding tube over the course of 2-3 minutes.

Dinner

Dinner is by far my favorite meal. For me, it’s also the most nutritionally balanced. I would say 6 out of 7 days of the week I am eating meat for dinner, whether it is steak or chicken. Occasionally I’ll mix in spaghetti, seafood or chicken noodle soup (I guess that counts as meat) – my mom and girlfriend are really trying to turn me onto the bone broth fad *eye roll*. A typical dinner plate will look like: steak, steamed broccoli, carrots (I like them raw – I hate cooked carrots) and some kind of potato. My favorite is mashed potatoes – also very calorically dense (especially the way my mom makes them – buttermilk style [I have no mastered that yet]). Mac and cheese (palate of a 6 year old) is also a common side dish for dinner. My all time favorite meal, though, is fried chicken, mashed potatoes, corn and carrots – hard to get a higher calorie count than that. I think if I were headed to the electric chair…. that would be my meal of choice.

Overnight feed 

For my overnight feed, I use four bags of Liquid Hope. It’s not the easiest thing in the world to digest, but in my opinion it’s the highest calorie, nutritionally balanced choice for people with feeding tubes (other than a homemade “blenderized” formula). It ends up being close to 2000 calories in total.

Everything else

I think it’s pretty easy to see that I was raised during the time when CF diets were focused around calories. Before the days when they (the people studying this stuff) realized other aspects of nutrition were equally as important (ex. minimizing sugar intake). That was back when it was acceptable to eat ice cream for breakfast (because calories!), and milk and cookies before dinner every night. Anything was better than nothing.

via GIPHY

I’m certainly fortunate in some ways that my metabolism works at light speed. To this point my blood sugar levels haven’t indicated a risk of CFRD (diabetes) despite my love for Gatorade and Coke. Like I said above, recently I’ve become more cognizant to the amount of sugar I am allowing into my body, ultimately because of my tube feeds. Feeding tube formulas, by their nature, aren’t exactly 100% healthy. They have to be able to live on the shelf for weeks or months at a time, and a big part of that is sugar – many of the calories in the specialized formulas come from the sugar in them as well. So while my feeding tube has been a lifesaver in many ways, it’s also led me to increase my sugar intake. As a result I have started to try and drop sugar from other places in my diet, like drinking less Gatorade, for example. Another thing I’ve done is to use Pedialyte for hydration instead. I’ve also never been a big water drinker, but I’ve recently been turned onto sparkling mineral water. Before you judge me for being one of those people that somehow likes sparkling water, I will say that it has led me to drinking fewer sports drinks/soda over the past 5 or 6 months. I’ll take that as a win.

As for other areas of my diet, I do a really good job of avoiding alcohol. That really hasn’t been the easiest thing for a 26 year old to do (especially since the beer funnel in the feeding tube incident) since we live in a world where people love taking pictures of themselves out drinking with their friends. Snapchat has essentially turned into an app with the sole purpose of showing off how much you can drink when you’re out with friends. With that being said, it has done a lot of good for my health – alcohol is dehydrating, it doesn’t interact well with medications, it can make antibiotics less effective and I’m already putting a ton of stress on my liver and kidneys. I haven’t cut it out entirely, but I’d say I’ll really only have a drink maybe like once a month. After all, a Budweiser does have good calories, but as far as I am concerned alcohol certainly isn’t a catalyst for “fun.”

Another little tidbit about my CF diet revolves around my enzymes. I hate to say it, but my enzymes (pills that I take with every meal) can serve as a deterrent to eating. The price for not taking my enzymes when I eat is extreme discomfort and quite a few trips to the toilet. I had enough of those experiences as a little kid to make sure that I never forget to take my enzymes before I eat now that I am older, but it’s just an extra step to the act of eating. I think from the outside looking in, it may be hard to understand why taking a couple pills could be difficult, but when you’re taking 30-40 (enzymes are only active in the body for about 45 minutes, so we have to take a separate dose each time we eat) a day for your entire life, it becomes annoying. It’s almost like my enzymes are the key to a door that allows me to eat food. The problem is, that key always needs to be available, and there are just times when I don’t want to get up from watching a movie, for example, to go grab my pills before I eat a snack.

Now that I have all of this down on paper, my big take away is that I lean heavily on my feeding tube for my nutrition (fruits, vegetables) and supplemental calories. The food I eat (with my mouth) is calorie centric, which, like I said I think comes from being a CF kid in the 90s. My daily calorie goal is around 5000, sometimes I hit it, other times I don’t. I make sure I hit it when I am in weight gain mode or when my activity level is high. When I’m sick my goal is between 3000-4000 calories, which is still pretty lofty, but the calories are necessary to help fight infection. The g-tube plays a huge role in all of this, and for that reason, it will always be an ally.

Ultimately I really do stand by the fact that I live a life rooted in discipline and adherence to SO many different rules and guidelines around my health that I do allow myself to eat and drink things that taste “good.” So while nutrition plays it’s role in CF care, so does my emotional health. I’m going to eat what makes me happy because avoiding meals is a big no-no with CF, but like anything else I try to keep my health in mind.

With all that being said, I’ll be the first person in line to get a giant plate of buffalo wings, nachos, BBQ or hibachi. You’re never going to be able to talk me out of those kinds of meals.