CF Nutrition
It’s been a while. I think that I have come to the conclusion that I am one of two things:
A) I am not a blogger or,
B) it is a lot of work….and I am just not up to the task. 
Maylie is doing incredibly well with the new routine and LOVES physio, it suits her well. Her eating is at an all time high. So, whether it is that she is currently feeling well and is not fighting an infection or that the new Swedish diet and plan is really helping, I am unsure, but either way, I am happy!! So, at this point we have cut out most refined sugar other than the occasional, once a week. We still use honey, maple syrup and agave as sweeteners. Also we have really kept with the routine of three scheduled meals and two snacks. She is so hungry for all of the “designated eating times,” so, she eats much more than she used to when she was encouraged to snack all day. She is up 2 pounds and 1.5 inches since the beginning of December. YEAH!!
I have recently met a mother of a little boy who is thriving with CF. She, like me is very concerned about the diet that is recommended for CFers. She recently wrote a book on CF Nutrition, “Cystic Fibrosis Nutrition Done Right.” I am going to attach her manuscript for you to look over. It is very interesting and has great recipes at the end of the book. You can download the manuscript on the left hand side of our page under “Nutrition.” Please let me know if for any reason it does not work! Keep on keepin’ on!
Here is a photo of May and her sister from last weekend sledding!
5 comments
Works just fine, Kat.
For some reason, I can’t figure it out.
Allison,
Sorry for the difficulty.
Sorry. If I could post it online, I could just do the link, but….did you find the heading? If you scroll down right next to the photo of May and Elle there is a tab called “nutrition,” if you click on the title, CF nutrition done right, it should open a window with the manuscript or if you are on a Mac, if just puts it into your downloads and I believe the title is cf-book. Let me know if that still does not work and include your email and I will send it directly to you!
Best~
This morning I had a great experiment I thought I would share:
First off Gluten free is good for Cf for many reasons but if wheat is tolerable the ingredients are generally made from bean and nut flours, which supply a higher protein level, iron and other good stuff, some may even add a good amount of fat compared to traditional foods, such as Nutthins crackers which have around 1g more fat and around 2g more protein than regular crackers:)
Pancakes-
Bob RedMill GF pancake mix
mix according to package directions
add 1 additional egg
add 3 tablespoons flax meal
add extra milk of choice to desired consistency
1/8 teaspoon cinnamon(optional)
2 drops stevia (optional)
These do tend to have a quicker cooking time than traditional pancakes so cook on a med-low to low temp and keep a good watch:)
Want other toppings than traditional syrup?
Top with cream cheese ( regular or tofutti cream cheese) with a spread of favorite Jam
A good drizzle of honey on top of a butter spread ( smart balance is GF spread and a good source of omegas) or real butter
Good Fat VS Bad Fat!!
For the longest time it has been highly reccommended by Nutrtionist to CF patients to eat fat, all kinds of fat, butter and McDonalds and whatever works to pack on the pounds.
Now that you all are livning a lot longer this is a concern, a huge concern. Just becasue you have CF does not make you invincible to other health concerns. With a weaker system you should be focusing more on healthy eating than the non-CF person, but it is important to all to understand.
I have noticed many peopld are utilizing oils as a fat source which can be great and horrible all in the same sentance. Lets first get straight that there are different kinds of fats. The good guys…unsaturated, monounsaturated and to follow polyunsaturated. The bad guys… saturated and Trans fat. This may seem simple, but not always.. I have noticed the most popular oil is coconut oil, I understand why, but dissagree in the daily use of it. The thing is it is known to be a “good ” saturated fat because its made froma differnt fatty chain, but all the same it is still a saturated fat and “good cholesteol” as they say. In moderation I agree its not HORRIBLE as I also believe McDonald’s and butter to be okay in moderation, a “treat”. As a dialy supplement it is not HIGH on the good guy list.
When choosing a daily supplemental oil you want to go with something high in unsaturated, and monounsaturated fats and polyunsaturated is ok but not the highest number. Olive oil is a great one as well as safflower oil. When reading the labels you will notice almost all oils have the same fat content of 14g, it is the type of fat from there that you need to pay attention to. also pay attention to how you plan to use the oil ( with heat with out heat).
I know that it seems that the bad fats and the coconut oil seem to help weight gain better, and quicker which you may notice a quick weight gain when done the wrong way, you will also notice a quick decrease in weight when sick when done the wrong way. Not that it doesn’t happen just not as severe. When it comes to weight gain with the good guys you must always remember two things… 1) space it out all day long ( infants 1 tablespoon, children 2 tablespoons, teenagers 3 tablespoons and adults 4 tablespoons) to much at once will just flush through you and do no good. 2) always pair with a starch to help in the absorption of the fat.
With Brandon being 20 months it is easy to add 2 tablesppons oil to his milk for the whole day and then add a few sprinkles of baby rice cereal to each cup. I make his milk with hemp seed nut, banana, safflower oil, acidophilis, goat’s milk concentrate, and pure water all blended together. I am sure he gets a small dose of essential things he needs spaced out all day long. This is how we avoided a feeding tube and incorperated special shakes to his diet where he would refuse meals ( he would drink). He does work daily on trying solid foods and is getting a little better as time goes on.
http://www.webmd.com/diet/functional-foods-8/good-fats-oils
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