Rara1982

Cystic Fibrosis and Whole30

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just curious if anyone else here has Cystic Fibrosis and has done/is doing the Whole30?

Bowel malabsorption is one of the lovely side effects that plague CF people and I'm delighted to see things have started 'moving' again since starting the Whole30!

xoxo Sarah

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Did you notice any improvement while doing W30? My nephew is being tested for cystic fibrosis. He's not quite two. He went into the hospital today for a sweat test. He had to have tubes put in his ears and has pneumonia in both lungs. I'm starting to research symptom/treatment options and I haven't run across any information about the role of diet (not really surprised). I was wondering if had any noticeable changes?

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Diet is really important in CF patients who are pancreatic insufficient as the body doesn't produce the enzymes to break down the food and they have a lot of issues with the bowel and malabsorption. I'm pancreatic sufficient so not such an issue (apparently my body missed the 'struggle to gain weight' memo too!!).

I've found paleo beneficial because eliminating the dairy drastically reduced the mucous production in my lungs and bowel making it easier to both breathe and digest food.

How did your nephew get on?

Sarah

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Haha thanks pomme! I'm ten years older than my original 'use by date' (they didn't expect me to live past 20) and showing no signs of slowing down :-)

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CF is especially hard with weight if you're on any medication which messes with it (either up or down). Hospital food doesn't always help ;)

I imagine the extra nutrition in Whole30 would be great for anyone with CF.

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I'm on Day 4 of my first Whole30 and I also have CF. I'd love to hear more about how you benefitted from the program and how you've modified your diet to improve respiratory function. I'm also pancreatic sufficient......and many, many years older than my expiration date (at the time I was born, expected survivial was about 5 or 6 years).

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CFers! Yay! :) 

Well I guess I don't technically "count" anymore, because I'm a transplant recipient (9+ years)! But I would THINK  most of this stuff would be great for CF people. I would bring it up with the dietician in clinic, because, as we know, we need waaaayyyy more calories than the general population. Of course the problem is: what do you WANT to eat, right? I remember so many days where I didn't want to eat anything at all. 

One caveat, I think--the dairy stuff. Since we're so prone to osteoporosis (and this is also common post transplant), I would definitely keep cheese/dairy/ice cream/ full fat dairy around. I've done that and I have zero bone problems. None. Nada. Zilch. I know that other paleo diets (like Mark's Daily Apple) let you keep full-fat dairy. So since we're all about the fat bandwagon, I'd say that this is probably the one area where we might want to "off-road", so to speak? Especially since so many meds are hard on the stomach and it's suggested that they be taken with food or milk? 

FYI: I'm 32, late diagnosis at the age of 11. 

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When dairy is included, it's usually called Primal rather than Paleo.

 

Some folks don't handle dairy well, I always thought I did, until I reintroduced it :) I can tolerate it better as my gut heals, but I'm still at my best without it.

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Glad to see some other CFers on here. I'm starting whole30 next week. I'm almost 4 years out of transplant. I have the opposite problem that i had before transplant, I'm gaining too much. I have pancreatic insufficiency as well but get stomach aches instead of not gaining weight. Hoping this helps figure things out!

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Vitamin K2 is not the same as Vitamin K (it's really annoying they have similar names as they are quite different in what they do). Plain Vitamin K is the one most people know, it's in green leafy veggies like spinach and kale. Vitamin K2 is in things like dairy, liver and eggs.

 

Congratulations Lyndsey, four years! :D

 

If you haven't had your zinc levels tested, sometimes there's deficiencies when there's pancreas issues.

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My daughter has CF, and she is about half way through Whole30. It has drastically improved her bloated/gassiness. The first couple of days are really hard because your gut gets worse instead of better.

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