cholesterol issues and CF?

[Mommafirst]

I would appreciate any insight from the adults around here...

Ever since Alyssa was a baby we have been asked to bolster her foods with butter and other oils. I have done what was asked and she has still required a feeding tube.

I can't help but think about the long term big picture...high cholesterol runs in my family, it may or may not be diet related, but my dad, mom and myself all take meds for high cholesterol.

I worry a lot about Alyssa's diet and how it may impact her over time. Not just that she might struggle with being overweight, but that she might have other issues that stem from the way she is fed as a CF patient now.

Her tube feeds are heavily sugar laden. I worry a good deal about all that sugar and diabetes later on. And I worry about all the fats and high cholesterol later on as well.

I know that lots of CF patients wind up with CFRD and I've been assured that it has nothing to do with diet. But what about high cholesterol? Is there any incidence of high cholesterol in CF patients related or unrelated to the CF diet??

 

[Mommafirst]

I would appreciate any insight from the adults around here...

Ever since Alyssa was a baby we have been asked to bolster her foods with butter and other oils. I have done what was asked and she has still required a feeding tube.

I can't help but think about the long term big picture...high cholesterol runs in my family, it may or may not be diet related, but my dad, mom and myself all take meds for high cholesterol.

I worry a lot about Alyssa's diet and how it may impact her over time. Not just that she might struggle with being overweight, but that she might have other issues that stem from the way she is fed as a CF patient now.

Her tube feeds are heavily sugar laden. I worry a good deal about all that sugar and diabetes later on. And I worry about all the fats and high cholesterol later on as well.

I know that lots of CF patients wind up with CFRD and I've been assured that it has nothing to do with diet. But what about high cholesterol? Is there any incidence of high cholesterol in CF patients related or unrelated to the CF diet??

 

[Mommafirst]

I would appreciate any insight from the adults around here...
<br />
<br />Ever since Alyssa was a baby we have been asked to bolster her foods with butter and other oils. I have done what was asked and she has still required a feeding tube.
<br />
<br />I can't help but think about the long term big picture...high cholesterol runs in my family, it may or may not be diet related, but my dad, mom and myself all take meds for high cholesterol.
<br />
<br />I worry a lot about Alyssa's diet and how it may impact her over time. Not just that she might struggle with being overweight, but that she might have other issues that stem from the way she is fed as a CF patient now.
<br />
<br />Her tube feeds are heavily sugar laden. I worry a good deal about all that sugar and diabetes later on. And I worry about all the fats and high cholesterol later on as well.
<br />
<br />I know that lots of CF patients wind up with CFRD and I've been assured that it has nothing to do with diet. But what about high cholesterol? Is there any incidence of high cholesterol in CF patients related or unrelated to the CF diet??

 

[Printer]

CFers have a difficult time absorbing fats. Low ckolesterol is a symptom of CF.

She will NEVER have a cholesterol problem.

 

[Printer]

CFers have a difficult time absorbing fats. Low ckolesterol is a symptom of CF.

She will NEVER have a cholesterol problem.

 

[Printer]

CFers have a difficult time absorbing fats. Low ckolesterol is a symptom of CF.
<br />
<br />She will NEVER have a cholesterol problem.

 

[thecatsmeow]

Don't say never because I have cf and also high cholesterol (on meds for it too) which I strongly believe is from the high fat diet we're put on.

 

[thecatsmeow]

Don't say never because I have cf and also high cholesterol (on meds for it too) which I strongly believe is from the high fat diet we're put on.

 

[thecatsmeow]

Don't say never because I have cf and also high cholesterol (on meds for it too) which I strongly believe is from the high fat diet we're put on.

 

[Mommafirst]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>thecatsmeow</b></i>

Don't say never because I have cf and also high cholesterol (on meds for it too) which I strongly believe is from the high fat diet we're put on.</end quote></div>

Are you pancreatic sufficient? My daughter is -- technically -- and I wonder if this high fat diet is more likely to impact her cholesterol than those that don't absorb fat.

 

[Mommafirst]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>thecatsmeow</b></i>

Don't say never because I have cf and also high cholesterol (on meds for it too) which I strongly believe is from the high fat diet we're put on.</end quote>

Are you pancreatic sufficient? My daughter is -- technically -- and I wonder if this high fat diet is more likely to impact her cholesterol than those that don't absorb fat.

 

[Mommafirst]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>thecatsmeow</b></i>
<br />
<br />Don't say never because I have cf and also high cholesterol (on meds for it too) which I strongly believe is from the high fat diet we're put on.</end quote>
<br />
<br />Are you pancreatic sufficient? My daughter is -- technically -- and I wonder if this high fat diet is more likely to impact her cholesterol than those that don't absorb fat.

 

[Rebjane]

Heather,

My sister asked me this question, too as we have high cholesterol in our family as well. My daughter is pancreatic insufficient. i told her it is very unlikely to worry about high cholesterol as my daughter malabsorbs even with her enzymes. For example, she won't eat bacon cause it is too fatty and gives her diahrea.

I try to do good fats; olive oil, fish oil capsules, almonds, all natural peanut butter. also we do alot of high protein, we've really been into turkey, bison, and fish.

However, I do worry about the high sugar; I don't like that the boost drinks etc are all sugar. I give my daughter the no sugar gatorade. It's too bad the tube feeds don't become more nutritionally sound. SUpply and demand I guess. And it's likely cheaper than using good fats and organic ingrediants.

 

[Rebjane]

Heather,

My sister asked me this question, too as we have high cholesterol in our family as well. My daughter is pancreatic insufficient. i told her it is very unlikely to worry about high cholesterol as my daughter malabsorbs even with her enzymes. For example, she won't eat bacon cause it is too fatty and gives her diahrea.

I try to do good fats; olive oil, fish oil capsules, almonds, all natural peanut butter. also we do alot of high protein, we've really been into turkey, bison, and fish.

However, I do worry about the high sugar; I don't like that the boost drinks etc are all sugar. I give my daughter the no sugar gatorade. It's too bad the tube feeds don't become more nutritionally sound. SUpply and demand I guess. And it's likely cheaper than using good fats and organic ingrediants.

 

[Rebjane]

Heather,
<br />
<br />My sister asked me this question, too as we have high cholesterol in our family as well. My daughter is pancreatic insufficient. i told her it is very unlikely to worry about high cholesterol as my daughter malabsorbs even with her enzymes. For example, she won't eat bacon cause it is too fatty and gives her diahrea.
<br />
<br />I try to do good fats; olive oil, fish oil capsules, almonds, all natural peanut butter. also we do alot of high protein, we've really been into turkey, bison, and fish.
<br />
<br />However, I do worry about the high sugar; I don't like that the boost drinks etc are all sugar. I give my daughter the no sugar gatorade. It's too bad the tube feeds don't become more nutritionally sound. SUpply and demand I guess. And it's likely cheaper than using good fats and organic ingrediants.

 

[hmw]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Printer</b></i>

CFers have a difficult time absorbing fats. Low ckolesterol is a symptom of CF.
She will NEVER have a cholesterol problem.</end quote></div>

This is not correct. It may have been in the past, but nowadays with better ways of managing nutrition, pancreatic insufficiency and the high fat/high-calorie supplements used to help in achieving weight gain, this can indeed become a legitimate concern in those with cf.

Emily's cholesterol levels have risen quite a bit in the last couple years due to better managing her pancreatic insufficiency, nutritional status and introducing extremely high-fat supplements. As a matter of fact, her total cholesterol is now higher than mine. At this point, she still has a healthy triglyceride level and good/bad ratio, but DOES CONCERN ME, since I want her to have a long lifespan- and this would mean looking at things in the long term, with an eye not just on cf issues but 'whole body' health (cardiovascular disease, etc!)

At this point her dr is not concerned about it. It's not technically 'high'. And they want her nutritional status to be as good as possible- she needs more fat in her diet than the typical person so we can't slash it at expense of nutrition as someone else could to try to fix this. But it's something I am going to be aware of as time passes and when I cook, I try to use fats/oils with as healthy a ratio of fats as possible, limit saturated fats, encourage as many fruits & veggies as possible (they have a protective effect on health in SO many ways), etc.

Re. the high-sugar supplements: when it comes to what they get through the tube. Since she isn't tasting it, is it an option to get something lower in sugar for her night feeds than the sugar-laden drinks intended for oral consumption? I don't have too much experience there other than what Emily uses, but I know hers is unflavored.

 

[hmw]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Printer</b></i>

CFers have a difficult time absorbing fats. Low ckolesterol is a symptom of CF.
She will NEVER have a cholesterol problem.</end quote>

This is not correct. It may have been in the past, but nowadays with better ways of managing nutrition, pancreatic insufficiency and the high fat/high-calorie supplements used to help in achieving weight gain, this can indeed become a legitimate concern in those with cf.

Emily's cholesterol levels have risen quite a bit in the last couple years due to better managing her pancreatic insufficiency, nutritional status and introducing extremely high-fat supplements. As a matter of fact, her total cholesterol is now higher than mine. At this point, she still has a healthy triglyceride level and good/bad ratio, but DOES CONCERN ME, since I want her to have a long lifespan- and this would mean looking at things in the long term, with an eye not just on cf issues but 'whole body' health (cardiovascular disease, etc!)

At this point her dr is not concerned about it. It's not technically 'high'. And they want her nutritional status to be as good as possible- she needs more fat in her diet than the typical person so we can't slash it at expense of nutrition as someone else could to try to fix this. But it's something I am going to be aware of as time passes and when I cook, I try to use fats/oils with as healthy a ratio of fats as possible, limit saturated fats, encourage as many fruits & veggies as possible (they have a protective effect on health in SO many ways), etc.

Re. the high-sugar supplements: when it comes to what they get through the tube. Since she isn't tasting it, is it an option to get something lower in sugar for her night feeds than the sugar-laden drinks intended for oral consumption? I don't have too much experience there other than what Emily uses, but I know hers is unflavored.

 

[hmw]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Printer</b></i>
<br />
<br />CFers have a difficult time absorbing fats. Low ckolesterol is a symptom of CF.
<br />She will NEVER have a cholesterol problem.</end quote>
<br />
<br />This is not correct. It may have been in the past, but nowadays with better ways of managing nutrition, pancreatic insufficiency and the high fat/high-calorie supplements used to help in achieving weight gain, this can indeed become a legitimate concern in those with cf.
<br />
<br />Emily's cholesterol levels have risen quite a bit in the last couple years due to better managing her pancreatic insufficiency, nutritional status and introducing extremely high-fat supplements. As a matter of fact, her total cholesterol is now higher than mine. At this point, she still has a healthy triglyceride level and good/bad ratio, but DOES CONCERN ME, since I want her to have a long lifespan- and this would mean looking at things in the long term, with an eye not just on cf issues but 'whole body' health (cardiovascular disease, etc!)
<br />
<br />At this point her dr is not concerned about it. It's not technically 'high'. And they want her nutritional status to be as good as possible- she needs more fat in her diet than the typical person so we can't slash it at expense of nutrition as someone else could to try to fix this. But it's something I am going to be aware of as time passes and when I cook, I try to use fats/oils with as healthy a ratio of fats as possible, limit saturated fats, encourage as many fruits & veggies as possible (they have a protective effect on health in SO many ways), etc.
<br />
<br />Re. the high-sugar supplements: when it comes to what they get through the tube. Since she isn't tasting it, is it an option to get something lower in sugar for her night feeds than the sugar-laden drinks intended for oral consumption? I don't have too much experience there other than what Emily uses, but I know hers is unflavored.

 

[jacobus]

Cf doctors generally know very little about nutrition. Of course the high incidence of CFRD is largely a result of the standard 'cf diet'. The truth is that when they developed those guidelines, no one with cf lived past 30 so issues like diabetes were not considered. There are ways to get the necessary calories without consuming so much refined white sugar. Maintaing a high calorie, healthy diet with cf is possible. It takes more effort and does cost a little more but it's well worth it.

 

[jacobus]

Cf doctors generally know very little about nutrition. Of course the high incidence of CFRD is largely a result of the standard 'cf diet'. The truth is that when they developed those guidelines, no one with cf lived past 30 so issues like diabetes were not considered. There are ways to get the necessary calories without consuming so much refined white sugar. Maintaing a high calorie, healthy diet with cf is possible. It takes more effort and does cost a little more but it's well worth it.