Is this true?

[Enzo2311]

While most people have to stay away from foods with large amounts of fat and high calorie counts, the exact opposite is true for patients with cystic fibrosis. When somebody has this disease, their pancreas does not work the way it should. The body does not absorb enough glucose from the blood because the pancreas is not creating insulin. This then forces the body to use fat as an energy source instead of the glucose, which comes straight off of the body of a cystic fibrosis patient. This is why they eat the foods that we can only eat sparingly, and on a daily basis. Here are some things that should be included in the diet of anybody with cystic fibrosis.


1. Iron – This has many positive effects for people that have cystic fibrosis. A large problem that CF causes is frequent infections. Patients need to be on antibiotics at all times, even when they are healthy so that they can treat infections when they occur, and prevent them from happening in the first place. Iron will not only help to stave off infection, but it will also help to increase the amount of oxygen that can be carried in the blood.


2. Sodium – A good amount of sodium is lost for cystic fibrosis sufferers. This is why somebody with CF has skin that tastes salty. To replace the sodium in the body, many salty and high sodium foods should be eaten throughout the day. This is especially important if they have been exercising, since more sweat will cause more sodium loss. Many experts and nutritionists also feel that a sports drink can also do the trick for cystic fibrosis patients.


3. Zinc – Just like iron, zinc is also important in fighting off infections. Another problem that cystic fibrosis causes is that sufferers do not grow as fast as everybody else, and usually not as much either. Having a healthy amount of zinc in a diet can help the human body grow. Besides these two benefits, zinc will also allow the body to heal faster. Since cystic fibrosis can cause several ailments within the body, being able to heal faster will improve the quality life for anybody with this disease.


4. Fats/calories – Pizza and cheeseburgers every day are usually what children dream of. CF patients have to eat that way every day. They need more fat and calories for energy so that their bodies do not burn the fat on their bodies. Other kids might become jealous of this diet, but after having to eat foods like that for every meal, most children would probably get sick of it. Actually, that is probably not true.


People with cystic fibrosis need to carefully monitor every part of their life to remain healthy. If they follow all the rules, including their diet, then they should be able to live normal lives. Surely keeping up this type of diet isn’t too difficult.




if the above is true, how come it seems like I have a lot of body fat on my body? My abs barely show. Or is it because I don't have big enough ab muscles?

 

[BreathinSteven]

Hi Enzo!

I'm not sure as to the rest of this post - and I hope others will chime in - but I've been lead to believe other things about your discussion of pancreatic function in your first paragraph...

The pancreas contains both endochrine and exocrine glands - ductless and ducted glands... We tend to have problems where there are ducts involved, whether our lungs or other organs. The thick, sticky mucus that results from our disease tends to clog / block-off these ducts, often gradually causing them to seal over and stop producing/delivering whatever it is that passes through those ducts.

Insulin is created in the endochrine portion of our pancreas. The exocrine portion creates a fat-digesting enzyme which, when we get to the point where it's not being released into our system, or enough of it is not being released into our system, we stop digesting fats properly and they tend to pass right through us creating streatorrhea or fatty/oily stools. Fat is generally a substantial calorie portion of anyone's diet and, the fact that we are not digesting it appropriately (if we're not taking supplimental enzymes) causes many of us CFers to have trouble gaining/maintaining weight.

For many of us, the endochrine part of the pancreas that produces insulin is not necessarily impacted - mine was not - the diabetes that I'm dealing with now is a result of a few of the drugs I take post transplant, and not due to CFRD / cystic fibrosis related diabetes... More often that not, CFRD occurs later in a CFer's "career" and not right out of the gate.

I agree with you that we need to carefully monitor every part of our lives to remain healthy - but I don't necessarily believe that "if they follow all the rules, including their diet..." that we can live "normal" lives. Yes - I believe that will work for some lucky ones, but there are also people that are incredible rule followers who acquire a certain bug or have a particular crisis, and they start a downhill spiral... And, keeping up the appropriate diet with all of the necessary nutrients can be very difficult, and sometimes costly for some. And for some, in the long run, it just doesn't seem to matter. I think as part of our nature, we look at one another and compare ourselves and our health and our habits to other people who share our disease. I've known people who took amazing care of themselves - MUCH better than I ever did - and I'd be shocked to find out they were gone... I've known others who popped nearly a 6-pack of beer daily and lived a pretty fast and reckless life - and they're still chugging along today. We all are impacted differently by this disease, in a slight or great way - and we all take slightly or greatly different paths.

So many of us experience so varied paths in this disease - we all have commonalities, but many of us have vastly different outcomes. More recently (past 15 years or so) they've discovered many various mutations of the disease - we know it's no longer one type of problem - maybe those mutations can explain some of it... We've both probably had friends who have stuggled or died with gut complications, blockages, failure to thrive and whatnot - though, most of us seem to come to the end of our roads due to our lungs... And, perhaps as you've noticed - most of us are thin and likely malnourished, but there are others that are of a relatively "normal" weight and others at or bordering on obesity (though those are the outliers...)

Can't say why you have a lot of body fat without knowing much more about you - I'm guessing that your CF doc might be able to clarify that for you. It could be that your ability to digest and absorb nutrients are better than some of us... Perhaps your intestines are not as impacted as some of us and that allows you to draw in more nutrients from your diet...

Love, Steve

 

[Enzo2311]

Hi Enzo!

I'm not sure as to the rest of this post - and I hope others will chime in - but I've been lead to believe other things about your discussion of pancreatic function in your first paragraph...

The pancreas contains both endochrine and exocrine glands - ductless and ducted glands... We tend to have problems where there are ducts involved, whether our lungs or other organs. The thick, sticky mucus that results from our disease tends to clog / block-off these ducts, often gradually causing them to seal over and stop producing/delivering whatever it is that passes through those ducts.

Insulin is created in the endochrine portion of our pancreas. The exocrine portion creates a fat-digesting enzyme which, when we get to the point where it's not being released into our system, or enough of it is not being released into our system, we stop digesting fats properly and they tend to pass right through us creating streatorrhea or fatty/oily stools. Fat is generally a substantial calorie portion of anyone's diet and, the fact that we are not digesting it appropriately (if we're not taking supplimental enzymes) causes many of us CFers to have trouble gaining/maintaining weight.

For many of us, the endochrine part of the pancreas that produces insulin is not necessarily impacted - mine was not - the diabetes that I'm dealing with now is a result of a few of the drugs I take post transplant, and not due to CFRD / cystic fibrosis related diabetes... More often that not, CFRD occurs later in a CFer's "career" and not right out of the gate.

I agree with you that we need to carefully monitor every part of our lives to remain healthy - but I don't necessarily believe that "if they follow all the rules, including their diet..." that we can live "normal" lives. Yes - I believe that will work for some lucky ones, but there are also people that are incredible rule followers who acquire a certain bug or have a particular crisis, and they start a downhill spiral... And, keeping up the appropriate diet with all of the necessary nutrients can be very difficult, and sometimes costly for some. And for some, in the long run, it just doesn't seem to matter. I think as part of our nature, we look at one another and compare ourselves and our health and our habits to other people who share our disease. I've known people who took amazing care of themselves - MUCH better than I ever did - and I'd be shocked to find out they were gone... I've known others who popped nearly a 6-pack of beer daily and lived a pretty fast and reckless life - and they're still chugging along today. We all are impacted differently by this disease, in a slight or great way - and we all take slightly or greatly different paths.

So many of us experience so varied paths in this disease - we all have commonalities, but many of us have vastly different outcomes. More recently (past 15 years or so) they've discovered many various mutations of the disease - we know it's no longer one type of problem - maybe those mutations can explain some of it... We've both probably had friends who have stuggled or died with gut complications, blockages, failure to thrive and whatnot - though, most of us seem to come to the end of our roads due to our lungs... And, perhaps as you've noticed - most of us are thin and likely malnourished, but there are others that are of a relatively "normal" weight and others at or bordering on obesity (though those are the outliers...)

Can't say why you have a lot of body fat without knowing much more about you - I'm guessing that your CF doc might be able to clarify that for you. It could be that your ability to digest and absorb nutrients are better than some of us... Perhaps your intestines are not as impacted as some of us and that allows you to draw in more nutrients from your diet...

Love, Steve

there was a time that I rarely took my enzymes and even then I gained weight, when I too my dr I only take enzymes once a day he was shocked because I had actually gained weight.

But is the following statement true?


The body does not absorb enough glucose from the blood because the pancreas is not creating insulin. This then forces the body to use fat as an energy source instead of the glucose, which comes straight off of the body of a cystic fibrosis patient

 

[Aboveallislove]

The body craves fat/calories before growth spurts/puberty and it is very important to build up and have the reserve ready for when you're body goes through the time periods. I strongly recommend not cutting back on food. . . trust your body and eat when hungry and eat what you want/crave. Your body knows. And if you want more muscles life weights, exercise, etc. but keep in mind that some of the "muscle" men aren't that way naturally.

 

[stephen]

Not everyone with CF has pancreatic problems!

Some of us thank G-d, have normal pancreatic and digestive functions. We need to watch our diets so as not to put on too much weight.

This is an issue during my meetings with the dietitian at the CF center. She is constantly telling me to consume a high caloric fatty diet. I however need to be careful to control my cholesterol and not gain too much weight.

 

[Aboveallislove]

He is ddf508.

 

[goherbs87654]

Hi Enzo, I am currently researching for tips for CF patient because I have a related who suffers this condition. About the last point you mentioned regarding fats and calories, does the volume and quantity matters? Or should we just resort to this kind of diet that contains mostly fast and high calories. Thanks.