Mommafirst, Why don't you set out some goals on this post. Posting them to us may help you stick to them. Why worry about things out of your control. While I've never had high cholesterol I am PI and do not follow a cf diet. I was born in 1978 and back then enzymes didn't work very well. I am part of the last of a generation that was raised high calorie but not high fat. I think very high protein is very important too. My mom always gave me good fats and I always had an aversion to butter being added to stuff (even bread!) so lots of food was the answer. I recall as a kid eating a mid morning snack at school in my hand like an apple...a potatoe with cheese inside cold with skin on. Down the hatch the whole potatoe! I think it's important to set up good eating habits but first priority is weight so not at the expense of weight loss. One cf child I know first thing in the morning eats a big spoonful of almond butter. It's easy, calorie, a good fat and good for her. How about it. Run your ideas by us or make this a dialogue and ask for suggestions. Also, could you get insurance to cover that organic supplement that was advertised on here this past Fall?
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Mommafirst, Why don't you set out some goals on this post. Posting them to us may help you stick to them. Why worry about things out of your control. While I've never had high cholesterol I am PI and do not follow a cf diet. I was born in 1978 and back then enzymes didn't work very well. I am part of the last of a generation that was raised high calorie but not high fat. I think very high protein is very important too. My mom always gave me good fats and I always had an aversion to butter being added to stuff (even bread!) so lots of food was the answer. I recall as a kid eating a mid morning snack at school in my hand like an apple...a potatoe with cheese inside cold with skin on. Down the hatch the whole potatoe! I think it's important to set up good eating habits but first priority is weight so not at the expense of weight loss. One cf child I know first thing in the morning eats a big spoonful of almond butter. It's easy, calorie, a good fat and good for her. How about it. Run your ideas by us or make this a dialogue and ask for suggestions. Also, could you get insurance to cover that organic supplement that was advertised on here this past Fall?
mikorankin
New member
It always helps to think of the suggested 'goals' as a matter function. The doctors and dieticians are already doing that for Alyssa in the sense that they know having poor body mass reserves going into a respiratory infection can wreak havoc on the body and make it more difficult to fight the bacteria. Any good dietician at your CF center is going to stay far ahead of the curve with routine visits. If Alyssa shows up heavy one day, they will pull back on calories and fats. Right now, you can't go wrong with supplying her with an abundance of both. Remember, she is probably absorbing half of the fats, proteins and starches of somebody without CF (even on her enzymes). If one does not absorb fat, one has very little concern over cholesterol build-up.
Before ever cutting back on suggested fats and calories, run your concerns past your CF dietician. There is an incredible dietician at Emory University's CF center who is starting to pull back a little on sugar in her adult patients, but would also caution against reducing fats when everything is working.
Before ever cutting back on suggested fats and calories, run your concerns past your CF dietician. There is an incredible dietician at Emory University's CF center who is starting to pull back a little on sugar in her adult patients, but would also caution against reducing fats when everything is working.
mikorankin
New member
It always helps to think of the suggested 'goals' as a matter function. The doctors and dieticians are already doing that for Alyssa in the sense that they know having poor body mass reserves going into a respiratory infection can wreak havoc on the body and make it more difficult to fight the bacteria. Any good dietician at your CF center is going to stay far ahead of the curve with routine visits. If Alyssa shows up heavy one day, they will pull back on calories and fats. Right now, you can't go wrong with supplying her with an abundance of both. Remember, she is probably absorbing half of the fats, proteins and starches of somebody without CF (even on her enzymes). If one does not absorb fat, one has very little concern over cholesterol build-up.
Before ever cutting back on suggested fats and calories, run your concerns past your CF dietician. There is an incredible dietician at Emory University's CF center who is starting to pull back a little on sugar in her adult patients, but would also caution against reducing fats when everything is working.
Before ever cutting back on suggested fats and calories, run your concerns past your CF dietician. There is an incredible dietician at Emory University's CF center who is starting to pull back a little on sugar in her adult patients, but would also caution against reducing fats when everything is working.
mikorankin
New member
It always helps to think of the suggested 'goals' as a matter function. The doctors and dieticians are already doing that for Alyssa in the sense that they know having poor body mass reserves going into a respiratory infection can wreak havoc on the body and make it more difficult to fight the bacteria. Any good dietician at your CF center is going to stay far ahead of the curve with routine visits. If Alyssa shows up heavy one day, they will pull back on calories and fats. Right now, you can't go wrong with supplying her with an abundance of both. Remember, she is probably absorbing half of the fats, proteins and starches of somebody without CF (even on her enzymes). If one does not absorb fat, one has very little concern over cholesterol build-up.
<br />Before ever cutting back on suggested fats and calories, run your concerns past your CF dietician. There is an incredible dietician at Emory University's CF center who is starting to pull back a little on sugar in her adult patients, but would also caution against reducing fats when everything is working.
<br />Before ever cutting back on suggested fats and calories, run your concerns past your CF dietician. There is an incredible dietician at Emory University's CF center who is starting to pull back a little on sugar in her adult patients, but would also caution against reducing fats when everything is working.
Heather:
It's hard not to worry, and there are no guarantees, but I think Alyssa will not have to be concerned about high cholesterol. I'm 55, diagnosed at 8, and basically ate everything that wasn't nailed down most of my life. I grew up before all of the concerns over HDL, LDL etc., and in 2007 I had an angiogram (unrelated issue: had a heart virus that had reduced my ejection fraction to 21%--it was back up to 61% in less than 3 weeks of treatment--still puzzles the docs) and my cardiologist said that my arteries were clearer than an 18-year old athlete. No plaque. High cholesterol runs in my family also.
I'm sure running all my life and trying to be as active as I could--eating healthy as well as trying to increase weight, etc. also helped. Best wishes.
It's hard not to worry, and there are no guarantees, but I think Alyssa will not have to be concerned about high cholesterol. I'm 55, diagnosed at 8, and basically ate everything that wasn't nailed down most of my life. I grew up before all of the concerns over HDL, LDL etc., and in 2007 I had an angiogram (unrelated issue: had a heart virus that had reduced my ejection fraction to 21%--it was back up to 61% in less than 3 weeks of treatment--still puzzles the docs) and my cardiologist said that my arteries were clearer than an 18-year old athlete. No plaque. High cholesterol runs in my family also.
I'm sure running all my life and trying to be as active as I could--eating healthy as well as trying to increase weight, etc. also helped. Best wishes.
Heather:
It's hard not to worry, and there are no guarantees, but I think Alyssa will not have to be concerned about high cholesterol. I'm 55, diagnosed at 8, and basically ate everything that wasn't nailed down most of my life. I grew up before all of the concerns over HDL, LDL etc., and in 2007 I had an angiogram (unrelated issue: had a heart virus that had reduced my ejection fraction to 21%--it was back up to 61% in less than 3 weeks of treatment--still puzzles the docs) and my cardiologist said that my arteries were clearer than an 18-year old athlete. No plaque. High cholesterol runs in my family also.
I'm sure running all my life and trying to be as active as I could--eating healthy as well as trying to increase weight, etc. also helped. Best wishes.
It's hard not to worry, and there are no guarantees, but I think Alyssa will not have to be concerned about high cholesterol. I'm 55, diagnosed at 8, and basically ate everything that wasn't nailed down most of my life. I grew up before all of the concerns over HDL, LDL etc., and in 2007 I had an angiogram (unrelated issue: had a heart virus that had reduced my ejection fraction to 21%--it was back up to 61% in less than 3 weeks of treatment--still puzzles the docs) and my cardiologist said that my arteries were clearer than an 18-year old athlete. No plaque. High cholesterol runs in my family also.
I'm sure running all my life and trying to be as active as I could--eating healthy as well as trying to increase weight, etc. also helped. Best wishes.
Heather:
<br />
<br />It's hard not to worry, and there are no guarantees, but I think Alyssa will not have to be concerned about high cholesterol. I'm 55, diagnosed at 8, and basically ate everything that wasn't nailed down most of my life. I grew up before all of the concerns over HDL, LDL etc., and in 2007 I had an angiogram (unrelated issue: had a heart virus that had reduced my ejection fraction to 21%--it was back up to 61% in less than 3 weeks of treatment--still puzzles the docs) and my cardiologist said that my arteries were clearer than an 18-year old athlete. No plaque. High cholesterol runs in my family also.
<br />
<br />I'm sure running all my life and trying to be as active as I could--eating healthy as well as trying to increase weight, etc. also helped. Best wishes.
<br />
<br />It's hard not to worry, and there are no guarantees, but I think Alyssa will not have to be concerned about high cholesterol. I'm 55, diagnosed at 8, and basically ate everything that wasn't nailed down most of my life. I grew up before all of the concerns over HDL, LDL etc., and in 2007 I had an angiogram (unrelated issue: had a heart virus that had reduced my ejection fraction to 21%--it was back up to 61% in less than 3 weeks of treatment--still puzzles the docs) and my cardiologist said that my arteries were clearer than an 18-year old athlete. No plaque. High cholesterol runs in my family also.
<br />
<br />I'm sure running all my life and trying to be as active as I could--eating healthy as well as trying to increase weight, etc. also helped. Best wishes.
I'll preface this by saying that I am "old school" concerning diet. I'm sure enzymes these days are much better then what I had as a kid. You do what you & your Dr have decided.
I am one that squeezes bacon, hamburgers, fried chicken, etc. with paper towels before I eat them. I could not imagine adding butter, cream, oil, etc to my foods. My reason for squeezing out everything is A) My parents did that, so it is a learned habit B) Greasy foods, (especially if I forget my enzymes and sometimes when I do take them) go thru me in the same form that I consume them, so why bother & put my organs thru the stress when it doesn't digest anyway. *shrugs*
I do have a good appetite & have always had good weights, with the exception of when I was an infant/toddler. I also have never shown high cholesterol.
I do have CFRD and am not sure if that's just the natural course of things or not, but will add that granulated sugar was my friend back in the day. I loved lots of sugar on my cereal, in my iced tea, coffee, lots of syrup on pancakes, could eat a whole box of chocolate covered cherries in one sitting (lol), etc. I now try to eat basically a diabetic diet, but will resort back to eating a lot of sugar & off-setting with insulin should maintaining weight ever be an issue.
Anyway, you asked to hear from adults, so there's my 2 cents worth!
I am one that squeezes bacon, hamburgers, fried chicken, etc. with paper towels before I eat them. I could not imagine adding butter, cream, oil, etc to my foods. My reason for squeezing out everything is A) My parents did that, so it is a learned habit B) Greasy foods, (especially if I forget my enzymes and sometimes when I do take them) go thru me in the same form that I consume them, so why bother & put my organs thru the stress when it doesn't digest anyway. *shrugs*
I do have a good appetite & have always had good weights, with the exception of when I was an infant/toddler. I also have never shown high cholesterol.
I do have CFRD and am not sure if that's just the natural course of things or not, but will add that granulated sugar was my friend back in the day. I loved lots of sugar on my cereal, in my iced tea, coffee, lots of syrup on pancakes, could eat a whole box of chocolate covered cherries in one sitting (lol), etc. I now try to eat basically a diabetic diet, but will resort back to eating a lot of sugar & off-setting with insulin should maintaining weight ever be an issue.
Anyway, you asked to hear from adults, so there's my 2 cents worth!
I'll preface this by saying that I am "old school" concerning diet. I'm sure enzymes these days are much better then what I had as a kid. You do what you & your Dr have decided.
I am one that squeezes bacon, hamburgers, fried chicken, etc. with paper towels before I eat them. I could not imagine adding butter, cream, oil, etc to my foods. My reason for squeezing out everything is A) My parents did that, so it is a learned habit B) Greasy foods, (especially if I forget my enzymes and sometimes when I do take them) go thru me in the same form that I consume them, so why bother & put my organs thru the stress when it doesn't digest anyway. *shrugs*
I do have a good appetite & have always had good weights, with the exception of when I was an infant/toddler. I also have never shown high cholesterol.
I do have CFRD and am not sure if that's just the natural course of things or not, but will add that granulated sugar was my friend back in the day. I loved lots of sugar on my cereal, in my iced tea, coffee, lots of syrup on pancakes, could eat a whole box of chocolate covered cherries in one sitting (lol), etc. I now try to eat basically a diabetic diet, but will resort back to eating a lot of sugar & off-setting with insulin should maintaining weight ever be an issue.
Anyway, you asked to hear from adults, so there's my 2 cents worth!
I am one that squeezes bacon, hamburgers, fried chicken, etc. with paper towels before I eat them. I could not imagine adding butter, cream, oil, etc to my foods. My reason for squeezing out everything is A) My parents did that, so it is a learned habit B) Greasy foods, (especially if I forget my enzymes and sometimes when I do take them) go thru me in the same form that I consume them, so why bother & put my organs thru the stress when it doesn't digest anyway. *shrugs*
I do have a good appetite & have always had good weights, with the exception of when I was an infant/toddler. I also have never shown high cholesterol.
I do have CFRD and am not sure if that's just the natural course of things or not, but will add that granulated sugar was my friend back in the day. I loved lots of sugar on my cereal, in my iced tea, coffee, lots of syrup on pancakes, could eat a whole box of chocolate covered cherries in one sitting (lol), etc. I now try to eat basically a diabetic diet, but will resort back to eating a lot of sugar & off-setting with insulin should maintaining weight ever be an issue.
Anyway, you asked to hear from adults, so there's my 2 cents worth!
I'll preface this by saying that I am "old school" concerning diet. I'm sure enzymes these days are much better then what I had as a kid. You do what you & your Dr have decided.
<br />
<br />I am one that squeezes bacon, hamburgers, fried chicken, etc. with paper towels before I eat them. I could not imagine adding butter, cream, oil, etc to my foods. My reason for squeezing out everything is A) My parents did that, so it is a learned habit B) Greasy foods, (especially if I forget my enzymes and sometimes when I do take them) go thru me in the same form that I consume them, so why bother & put my organs thru the stress when it doesn't digest anyway. *shrugs*
<br />
<br />I do have a good appetite & have always had good weights, with the exception of when I was an infant/toddler. I also have never shown high cholesterol.
<br />
<br />I do have CFRD and am not sure if that's just the natural course of things or not, but will add that granulated sugar was my friend back in the day. I loved lots of sugar on my cereal, in my iced tea, coffee, lots of syrup on pancakes, could eat a whole box of chocolate covered cherries in one sitting (lol), etc. I now try to eat basically a diabetic diet, but will resort back to eating a lot of sugar & off-setting with insulin should maintaining weight ever be an issue.
<br />
<br />Anyway, you asked to hear from adults, so there's my 2 cents worth!
<br />
<br />I am one that squeezes bacon, hamburgers, fried chicken, etc. with paper towels before I eat them. I could not imagine adding butter, cream, oil, etc to my foods. My reason for squeezing out everything is A) My parents did that, so it is a learned habit B) Greasy foods, (especially if I forget my enzymes and sometimes when I do take them) go thru me in the same form that I consume them, so why bother & put my organs thru the stress when it doesn't digest anyway. *shrugs*
<br />
<br />I do have a good appetite & have always had good weights, with the exception of when I was an infant/toddler. I also have never shown high cholesterol.
<br />
<br />I do have CFRD and am not sure if that's just the natural course of things or not, but will add that granulated sugar was my friend back in the day. I loved lots of sugar on my cereal, in my iced tea, coffee, lots of syrup on pancakes, could eat a whole box of chocolate covered cherries in one sitting (lol), etc. I now try to eat basically a diabetic diet, but will resort back to eating a lot of sugar & off-setting with insulin should maintaining weight ever be an issue.
<br />
<br />Anyway, you asked to hear from adults, so there's my 2 cents worth!
M
Mommafirst
Guest
Thank you all for your input.
I don't really have any "goals" for this per se. Alyssa struggles with weight gain despite being pancreatic sufficient and having a feeding tube. So right now I really can't pull her calories or fat intake, though I can use more heart healthy fats such as fish oils and nuts versus butter. I do use butter a lot -- she loves it and its so dense in calories.
I've been talking to our dietician about this and she's great, its just so hard to see what will come from a lifetime of a high fatty diet. As the CF population ages, there are so many unknown factors comig to light. I'd really feel like a failure if better treatments means Alyssa beats this disease only to suffer from ailments related to how she ate FOR this disease.
I'm a worrier by nature. I really appreciate seeing that most of the adults who responded don't have cholesterol issues at all.
I don't really have any "goals" for this per se. Alyssa struggles with weight gain despite being pancreatic sufficient and having a feeding tube. So right now I really can't pull her calories or fat intake, though I can use more heart healthy fats such as fish oils and nuts versus butter. I do use butter a lot -- she loves it and its so dense in calories.
I've been talking to our dietician about this and she's great, its just so hard to see what will come from a lifetime of a high fatty diet. As the CF population ages, there are so many unknown factors comig to light. I'd really feel like a failure if better treatments means Alyssa beats this disease only to suffer from ailments related to how she ate FOR this disease.
I'm a worrier by nature. I really appreciate seeing that most of the adults who responded don't have cholesterol issues at all.
M
Mommafirst
Guest
Thank you all for your input.
I don't really have any "goals" for this per se. Alyssa struggles with weight gain despite being pancreatic sufficient and having a feeding tube. So right now I really can't pull her calories or fat intake, though I can use more heart healthy fats such as fish oils and nuts versus butter. I do use butter a lot -- she loves it and its so dense in calories.
I've been talking to our dietician about this and she's great, its just so hard to see what will come from a lifetime of a high fatty diet. As the CF population ages, there are so many unknown factors comig to light. I'd really feel like a failure if better treatments means Alyssa beats this disease only to suffer from ailments related to how she ate FOR this disease.
I'm a worrier by nature. I really appreciate seeing that most of the adults who responded don't have cholesterol issues at all.
I don't really have any "goals" for this per se. Alyssa struggles with weight gain despite being pancreatic sufficient and having a feeding tube. So right now I really can't pull her calories or fat intake, though I can use more heart healthy fats such as fish oils and nuts versus butter. I do use butter a lot -- she loves it and its so dense in calories.
I've been talking to our dietician about this and she's great, its just so hard to see what will come from a lifetime of a high fatty diet. As the CF population ages, there are so many unknown factors comig to light. I'd really feel like a failure if better treatments means Alyssa beats this disease only to suffer from ailments related to how she ate FOR this disease.
I'm a worrier by nature. I really appreciate seeing that most of the adults who responded don't have cholesterol issues at all.
M
Mommafirst
Guest
Thank you all for your input.
<br />
<br />I don't really have any "goals" for this per se. Alyssa struggles with weight gain despite being pancreatic sufficient and having a feeding tube. So right now I really can't pull her calories or fat intake, though I can use more heart healthy fats such as fish oils and nuts versus butter. I do use butter a lot -- she loves it and its so dense in calories.
<br />
<br />I've been talking to our dietician about this and she's great, its just so hard to see what will come from a lifetime of a high fatty diet. As the CF population ages, there are so many unknown factors comig to light. I'd really feel like a failure if better treatments means Alyssa beats this disease only to suffer from ailments related to how she ate FOR this disease.
<br />
<br />I'm a worrier by nature. I really appreciate seeing that most of the adults who responded don't have cholesterol issues at all.
<br />
<br />I don't really have any "goals" for this per se. Alyssa struggles with weight gain despite being pancreatic sufficient and having a feeding tube. So right now I really can't pull her calories or fat intake, though I can use more heart healthy fats such as fish oils and nuts versus butter. I do use butter a lot -- she loves it and its so dense in calories.
<br />
<br />I've been talking to our dietician about this and she's great, its just so hard to see what will come from a lifetime of a high fatty diet. As the CF population ages, there are so many unknown factors comig to light. I'd really feel like a failure if better treatments means Alyssa beats this disease only to suffer from ailments related to how she ate FOR this disease.
<br />
<br />I'm a worrier by nature. I really appreciate seeing that most of the adults who responded don't have cholesterol issues at all.
I have CF and my cholesterol has gotten really good since I've become vegetarian and eating lots of the good fats. lots of Avocado's, walnuts, almonds, peanutbutter, olive oil, coconut oil (which is actually antibacterial and antiviral too!)I've maintained my weight really well. Not that people have to become vegetarian, but it does help and eating the healthy fats instead of the saturated or hydrogenated, or fats from meats is healthier. My good cholesterol was 85 last time! I have high cholesterol in my family too. My dr told me that most people with CF have low cholesterol, but their good cholesterol is also low. But definately you have to make sure she has enough calories to maintain weight because if she doesn't that will affect her CF, and that's #1. So many things to consider with CF! But you can take in healthier calories with those healthy fats. My dr's were supprised that I maintained weight so well. When she gets older encourage protein with weights. That helps with osteopenia in CF too, and the more muscle the better. From studying I have learned that cholesterol levels are more affected by carbs. That's why the Atkins diet worked to help correct cholesterol levels in his patients. But that's an extreme diet!
I have CF and my cholesterol has gotten really good since I've become vegetarian and eating lots of the good fats. lots of Avocado's, walnuts, almonds, peanutbutter, olive oil, coconut oil (which is actually antibacterial and antiviral too!)I've maintained my weight really well. Not that people have to become vegetarian, but it does help and eating the healthy fats instead of the saturated or hydrogenated, or fats from meats is healthier. My good cholesterol was 85 last time! I have high cholesterol in my family too. My dr told me that most people with CF have low cholesterol, but their good cholesterol is also low. But definately you have to make sure she has enough calories to maintain weight because if she doesn't that will affect her CF, and that's #1. So many things to consider with CF! But you can take in healthier calories with those healthy fats. My dr's were supprised that I maintained weight so well. When she gets older encourage protein with weights. That helps with osteopenia in CF too, and the more muscle the better. From studying I have learned that cholesterol levels are more affected by carbs. That's why the Atkins diet worked to help correct cholesterol levels in his patients. But that's an extreme diet!
I have CF and my cholesterol has gotten really good since I've become vegetarian and eating lots of the good fats. lots of Avocado's, walnuts, almonds, peanutbutter, olive oil, coconut oil (which is actually antibacterial and antiviral too!)I've maintained my weight really well. Not that people have to become vegetarian, but it does help and eating the healthy fats instead of the saturated or hydrogenated, or fats from meats is healthier. My good cholesterol was 85 last time! I have high cholesterol in my family too. My dr told me that most people with CF have low cholesterol, but their good cholesterol is also low. But definately you have to make sure she has enough calories to maintain weight because if she doesn't that will affect her CF, and that's #1. So many things to consider with CF! But you can take in healthier calories with those healthy fats. My dr's were supprised that I maintained weight so well. When she gets older encourage protein with weights. That helps with osteopenia in CF too, and the more muscle the better. From studying I have learned that cholesterol levels are more affected by carbs. That's why the Atkins diet worked to help correct cholesterol levels in his patients. But that's an extreme diet!
Justsmurfin
New member
I have high cholesterol but in my case its NOT due to diet. I am on Seroquel which is known to cause high cholesterol and have PCOS which one hallmark of it is unexplainable high cholesterol (and weight gain..probably the only PI cf patient that is overweight). I was diagnosed with PCOS before starting seroquel
Seems my cholesterol has evened out some.
Never say never and diet is not the only factor for high cholesterol
Seems my cholesterol has evened out some.
Never say never and diet is not the only factor for high cholesterol
Justsmurfin
New member
I have high cholesterol but in my case its NOT due to diet. I am on Seroquel which is known to cause high cholesterol and have PCOS which one hallmark of it is unexplainable high cholesterol (and weight gain..probably the only PI cf patient that is overweight). I was diagnosed with PCOS before starting seroquel
Seems my cholesterol has evened out some.
Never say never and diet is not the only factor for high cholesterol
Seems my cholesterol has evened out some.
Never say never and diet is not the only factor for high cholesterol
Justsmurfin
New member
I have high cholesterol but in my case its NOT due to diet. I am on Seroquel which is known to cause high cholesterol and have PCOS which one hallmark of it is unexplainable high cholesterol (and weight gain..probably the only PI cf patient that is overweight). I was diagnosed with PCOS before starting seroquel
<br />
<br />Seems my cholesterol has evened out some.
<br />
<br />Never say never and diet is not the only factor for high cholesterol
<br />
<br />Seems my cholesterol has evened out some.
<br />
<br />Never say never and diet is not the only factor for high cholesterol