Nutrition – Patient Task Force Meeting

By: Melissa Shiffman

Growing up, I had an unhealthy relationship with food. My brother and I both were diagnosed with Cystic Fibrosis as children. He was pancreatic insufficient, painfully thin and took handfuls of enzymes. Meal times were filled with constant fighting as my parents tried to force him to eat. Meanwhile, I was pancreatic sufficient with a very healthy appetite. Our body shapes could not be more different! He was skin and bones and I was chubby. As I got older, “chubby” was socially unacceptable. I was twelve the first time I went on the “hotdog diet!”

I have no real memory of fresh fruit and vegetables being readily available. Instead, our refrigerator was filled with high calorie, high fat foods to encourage my brother to eat: Kit Kats, Nestle Crunch, ice cream, Sustacal puddings. I was told not to eat his food, so I snuck it and ate in my room. I gained more weight. My brother made fat faces to get under my skin as I sucked in my cheeks back to him.

Like a normal pre-teen, I became self conscious about my appearance.Everyone talked about fad diets and losing weight. I absorbed that being thin was ideal. By the end of 8th grade, I convinced myself that, if I read the ingredients in things like Oreos, I would find a way to be disgusted. Eventually, I talked myself out of eating most foods except for grapefruit and canned tuna without mayo. I ate minimally and cut out sweets. I lost a lot of weight, started to look more like my brother (but less sickly) and revelled in the compliments on my weight loss.  

I know this is not the normal CF story. However, it is so important to recognize our relationship with food and to rectify our lack of education on eating well when you are underweight or gaining weight on modulators. Therefore, I am looking forward to Dr.Tonja Gonska (gastroenterologist at Sick Kids Hospital in Toronto) discussing healthy eating vs. high fat/high caloric intake, body composition vs. BMI and how nutrition plays a role in healthy weight gain for women with CF at the CFReSHC Patient Task Force meeting on Thursday March 21, 2019 from 3-5 pm EST.

Attendees can share their personal experiences, help develop potential research questions to be addressed by the CFReSHC research advisory panel and receive an Amazon gift card for their time.  For more information on CFReSHC and for login information email CFReSHC at info@CFReSHC.org.  

Making it Matter Podcast – CF Nutrition

Making it Matter Podcast Ep. 10 – CF Nutrition

Nutrition is something I love to talk about (well…. ever since I got my feeding tube placed in 2011). It is a vital part of CF care, something that Julia and I approach differently. While my pancreas doesn’t seem to work, Julia knows she is Continue reading Making it Matter Podcast – CF Nutrition

CF Wind Sprints Episode 32: Using a Feeding Tube

In the following episode of CF Wind Sprints, Jerry Cahill introduces the question of how to use a feeding tube. Although Jerry has never used a feeding tube, his friend Gunnar Esiason has, and is able to give a short overview of its use.

http://www.youtube.com/watch?feature=player_embedded&v=8ZjAIXIAdSU

CF Wind Sprint Episode 29: Energy and Protein Bars

In this episode, Jerry discusses several protein and energy bars that he uses to boost his workouts. Prior to a workout, it is extremely important to store up energy, and then to replenish your energy afterwards, until you have time for a full meal. Jerry goes through a number of his favorite bars.

http://www.esiason.org/thriving-with-cf/cf-wind-sprint-episode-29-energy-and-protein-bars.php