The risks of cystic fibrosis diet

[sheilaaa14191]

Hey guys,
Do any of you know if there's a risk to eating such fatty foods that our nutritionalists are always encouraging? I know it's important to keep our weight up, but what about the long term affects? What about increased risk of heart disease from such unhealthy foods? I just want to make sure that adding extra calories to each of my meals isn't going to affect more of my health in the future.
Lots of love.

 

[jaimers]

There are lots of ways to eat healthy fats such as nuts, avocados, coconut oil, olive oil, butter, etc. that will give you extra calories you need to gain/maintain weight without eating junk food. there have been some conversations about this in the past so if you do a search for terms like "healthy fats," "weight gain" or things along those lines you should find some of those threads. Also check out some of the alternative medicine threads--there are some that talk about alternative diets that have helped people eat better quality food without sacrificing their weight. Good luck!

 

[ethan508]

When I was younger I was underweight so getting any calories inside of me was better than nothing. Now my weight is managed so I worry more about controlling indigestion and getting nutritional density/variety. As weight became less of an issue, I cut out the less healthy things first and have ended up with a far more 'normal' balance diet (but with larger portions).

With CF you sort of have to deal with the problems you have now. If your BMI is below 20 then focus on getting calories anyway you can, healthy fats are a great place to start. Find out what you can eat (and digest) a lot of and don't feel bad about eating that to excess. For me it was bowls of cereal, for my older brother it was PB & honey sandwiches, for my kid brother it was bags of potato chips. If your is BMI 20-25 then focus high calories and a balanced diet. Above 26 BMI, then you can start focusing more on more nutrition density. The risk of being underweight is just so much higher for us than the heart disease risk that it isn't something clinics have had to think about much. I imagine this will change as more of us make it past middle age. But I doubt 'low fat' will ever be a diet recommended for CF folks.

 

[Oboe]

Just remember that CFRD is a thing and that high blood sugar is an inflammatory which can be unpleasant in the short-term, and damaging in the long-term.

 

[imported_Momto2]

ethan, some folks with CF have to eat a low fat diet, like me. And I have heard of others as well. If I actually ate everything I wanted to, I'd be morbidly obese. And its been this way for over 20 years, even with daily exercise.

 

[ethan508]

@imported_momto2: I still learn new stuff about CF despite decades of learning.

 

[Gammaw]

I asked our nutritionist once if eating all this high calorie, high fat junk wouldn't make CFRD more likely. She said No. She explained that CFRD is more like Type 1 diabetes, rather than diet induced Type 2. Interesting. Maybe others can explain this for us all a little better.

 

[Twistofchaos]

Fat itself is not unhealthy. Neither are carbs.
It's just that a lot of easy products and especially junk food contain the most unhealthy forms of each along with a bunch of stuff you really don't want in your body so ofcourse trying to keep weight up on junk food and stuff with lots of processed simple sugars in them is not healthy in the (not so) long run.

But you can find/make/eat just as calorie dense foods by using more natural less processed fats, (real butter, nuts etc.) carbs (veggies, fruit (not so much fruit juice) rice, pasta, etc.) and protein.

Fat does not make one fat. It's the total amount of calories you take in on a day. Use up more calories than you eat and you lose weight even if you ate pretty much only fat. (the thought alone makes me cringe in cramps and run to the bathroom) Take in more calories than you use and you gain weight even if you took in 0 grams of fat.

CF'ers even overweight ones should try to maximise fat intake depending on how pancrease insufficient they are (and I mean fat intake relative to carbs and protein because you do have to keep an eye on total calories.) because fats stimulate a lot of healthy things in the body. High protein is also extremely important because a CF body constantly tries to break down and we want to build it up, also gain weight in the form of muscle rather than fat. The rest of the calorie requirement you make up of carbs.

CFRD is caused because the part of the pancrease that produces insulin is slowly damaged. The islets of Langerhans. Well, needing high insulin levels for long periods of time (ie. when sick) does speed it up as far as I knew. So a healthy diet does help.
I've been borderline CFRD since my teens, last 5+ years I do a form of intermittent fasting ie. eating the same as normal in a smaller feeding window and that normalised my glucose levels (ie. a huge improvement) since then knock on wood. I wrote a long post on that a while ago here.

 

[Gammaw]

Hi Twist. You lost me. Processed sugars - bad. Understood. Processed fats - bad, and natural fats and sugars - good. I get that too. I also understand the type 1 diabetes like process that can result in CFRD - that's it's not so much the diet but the CF pancreas malfunctioning. However I got lost when you explained how you have been able to normalize your glucose levels so that, I assume, you're not relying on insulin production so much to keep CFRD at bay.......Thanks so much for the conversation!

 

[Twistofchaos]

I lost you? But you're right there. *waves*
I do not assume my pancreas itself improved. Days where I can't stick to my regular diet much of my old problems re-emerge. But my pancreas still produces insulin most of the time..and whenever it feels like it. So my adjustment was a lifestyle one where my diet causes much less insulin drops and spikes and keeps the bloodsugars in check working around the quirky ways my pancreas works for now knock on wood.

So that can be regarded more a type 2 diabetes till it stops working to the point where I have to inject insulin and could be regarded type 1. Until one gets there diet and lifestyle makes a big difference in the CFRD department. Infact it does with full on type 1 as well, ofcourse. From what I know putting huge strain on the pancreas for insulin for long periods of time (sometimes unavoidable) can speed up the damaging process, but I guess that is up to debate and I have not looked into that recently.

 

[imported_Momto2]

Twist- yep, I was able to control the blood sugar with diet and exercise for years but then tipped over to being more Type 1ish around 40.

 

[rmotion]

Yeah good fats like mentioned above. The crap you find in candy bars, scandi shake etc is just junk food. Also watch out for the sugar and other "recommended" foods, they all cause inflammation. It takes 30 years for perceptions to change. So before we all died so young it did not matter what we ate, now people are living longer and have to eat better but clinic has not caught up. Try to limit your bad fats, simple sugars, gluten and dairy for 30 days and see how you feel!

 

[Gammaw]

Ok guys. I have a 10 year old who would eat nothing but bacon, pancakes and biscuits bathed in honey if he could And as many Boosts he could get his hands on. Chocolate flavored of course. Tell me what you eat in a day!

 

[ethan508]

It is true we are living longer and need to watch our diets as part of long term health. But a good part of that longevity is because we are pounding calories like never before (and able to digest them thanks to Creon et al). So along those lines, what do you guys do to get your recommended calories in a day? And how do you hit that goal? A couple clinic visits back, my dietician recommended that I eat 3600 daily. I've been slowly gaining weight lately (BMI about 26) so I'm thinking 3000 should be my target. When I was a teen my recommended intake was well above 4000.

I think a bag of gummy worms or a 44 oz. of cola should not be the calories we are trying to get. But I'd have a very difficult time getting my calories eliminating all simple sugars, gluten, dairy and 'bad' fats. And for my growing teenage self (years ago) I just needed to eat anything I could get my hands on to reach 4500 calories. My mom did provide lots of 'real' food in the center of my diet (usually through large portions of what the family was eating) so the candy bar or scandi shake were supplements and not staples. But I needed things easy to eat and high in calories to be able to pack in 4000+. Now I don't need those supplements but I still eat a lot of dairy, planned snacks, and large portions.

 

[Twistofchaos]

Dairy is not really bad unless you're lactose intollerant. Many think they are but few are. If they're caucasian anyway. It's a pretty good source of calories, fats and all of that.
Whole milk and real butter are making a comeback anyway because things like skimmed milk (you take out the good bits and are left with white sugar water) and margarine are pretty terrible healthwise as again it's not about the fat as has been long believed, (partially fueled by the margarine industry since the late 1800's..mostly from my country and a company called Unilever..) but about the portions and total calories.

The gluten thing also makes no sense. Yet another unfounded diet fad to go with that Paleo nonsense and other spin offs. Coeliac/gluten sensitivity too is pretty rare even though lately everyone thinks they have it. Most of the reasoning in anti-gluten sources is that people replace vegies and quality foods with grains anyway but that you need to have a balanced diet is obvious.
Ideally I would like to survive solely on a wheelbarrel full of home grown raw veggies a day but in practise it doesn't work.

Shouldn't try to rely on weightgainers but if having much trouble eating or gaining weight life is pretty hard without them. Could take them mixed with other food to slow the absorbtion, even the insulin response and all of that. Good medical weightgainers contain required minerals, vitamins, fibers and all of that atleast to be able to function as mealreplacement when sick so have to look into them a bit and find a decent one.

Can make a simple one yourself too by making a shake of oatmeal, milk and whey protein powder. If you can digest it you can throw in peanutbutter and whatever else.

Pancakes are pretty good too and you can throw an endless variation of ingredients on them to vary. Mmm bacon biscuit chocolate pancakes.

 

[Dank]

I'll start this with my experience, and to say up till about 5 years ago, I've never had pancreas problems, meaning it always worked. As a kid, I ate poorly. Partially because of my upbringing allowed only so much money for food in the house, and partially because it was hard to keep weight on anyways with me so active. I drank a lot of soda and empty calories, and ate poorly as a result. How did this make me feel? Miserable. I grew up without all of my vitamins and such, and although I tried to drink as much whole milk as possible I would also lose weight between CF visits.

Now that I am older and much more health conscious, my life seems to be progressing along and I feel much better. I am also maintaining my weight. The secret is simply put, eating better and more frequently. My pancreas is mostly still working. I've cut out almost all processed foods out of my diet except for some CLIF bars found in a local organic store. We juice and make protein smoothies often, as well as only making food here at the apartment. I attribute most of my good eating habits to my girlfriend, who is studying to become a health coach and holistic nutritionist. She's a very firm believer that our food is our medicine. Her and I don't see eye to eye because I demand science to her ramblings and she cannot always produce that, but she has changed my habits for the better.

That being said, I've cut out most red meat, I've tried to minimalize my fat intake in an attempt to make the pancreas work less, and I've tried to maximize my fruits and veggies intake. I don't eat things that don't agree with my stomach (fatty foods, fast food, corn, etc etc etc) and we try to cook very fresh and healthy food. We try to eat simple but healthy lifestyle foods. We typically dont buy or eat things that we can't find in an organic store, and we don't make foods from boxes or warm up meals from the freezer. Our freezer is mostly empty save the occasional frozen veggie depending on what we may be fixing.

Here's what my day (almost)always consists of. At least 1 tall glass of almond milk a day (calcium). At least 2-3 Oats CLIF bars(250calories, 6g of fat, 10g of protein). At least 1-3 20g protein bar (10g of fat, 20g of protein, 400~cal iirc) (CLIF). And I eat, constantly. I am trying to get better at always eating small meals throughout the day. I try to drink at least one cup of 8oz of juice (juiced from fruits/veggies) and TRY to include either fish or chicken into at least one meal of the day to add protein. I also drink a lot of water (at least 4x 24oz blender bottle full a day).

I don't take enzymes (pancreas works for now...) and I don't take any vitamins (but could probably use more calcium and vit d). I drink probably one cup of coffee a day and usually two to three glasses of tea. Whole ingredient tea, no added preservatives.

We still eat out occasionally, but it's rare. We aren't super picky about food we eat out, but we don't go to chain restaurants.

I've been keeping up with this lifestyle of eating and drinking for roughly 2 years now and I can tell you how it's changed me. I have more energy. In the life of CF'r that's very important, to keep going. If I know I'm going to be doing something very strenous, I know I have to keep up with an even larger intake of nutrients to fuel that. It's been working out for me pretty well, I walked nearly 10 miles last Saturday.

Last thing I'll say is you need to find a balance in healthy food and food you enjoy eating, it's a balance.