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sasha
07-03-2009, 05:40 AM
just wondering if it's possible to ever become non-dependent on enzymes? and what makes certain people pancreatic sufficient and pancreatic insufficient? hmm...

sasha
07-03-2009, 05:40 AM
just wondering if it's possible to ever become non-dependent on enzymes? and what makes certain people pancreatic sufficient and pancreatic insufficient? hmm...

sasha
07-03-2009, 05:40 AM
just wondering if it's possible to ever become non-dependent on enzymes? and what makes certain people pancreatic sufficient and pancreatic insufficient? hmm...

sasha
07-03-2009, 05:40 AM
just wondering if it's possible to ever become non-dependent on enzymes? and what makes certain people pancreatic sufficient and pancreatic insufficient? hmm...

sasha
07-03-2009, 05:40 AM
just wondering if it's possible to ever become non-dependent on enzymes? and what makes certain people pancreatic sufficient and pancreatic insufficient? hmm...

beleache
07-07-2009, 09:41 PM
You may want to do a search on this question and/or post in the adult section .. Hope u get some answers <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni

beleache
07-07-2009, 09:41 PM
You may want to do a search on this question and/or post in the adult section .. Hope u get some answers <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni

beleache
07-07-2009, 09:41 PM
You may want to do a search on this question and/or post in the adult section .. Hope u get some answers <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni

beleache
07-07-2009, 09:41 PM
You may want to do a search on this question and/or post in the adult section .. Hope u get some answers <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni

beleache
07-07-2009, 09:41 PM
You may want to do a search on this question and/or post in the adult section .. Hope u get some answers <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni

MicheleGazelle
07-07-2009, 10:56 PM
My son and I got off enzymes. I have spoken with one other person whose child eventually stopped needing them. I have a few thoughts on how that happened for me and my son. The other person I talked to apparently had no idea how it happened. Since some percentage of folks start out pancreatic sufficient and become insufficient, it seems logical to me that it isn't simply "genetic" but that some process of deterioration leads to it. So presumably it is potentially reversible if sufficiently understood.

MicheleGazelle
07-07-2009, 10:56 PM
My son and I got off enzymes. I have spoken with one other person whose child eventually stopped needing them. I have a few thoughts on how that happened for me and my son. The other person I talked to apparently had no idea how it happened. Since some percentage of folks start out pancreatic sufficient and become insufficient, it seems logical to me that it isn't simply "genetic" but that some process of deterioration leads to it. So presumably it is potentially reversible if sufficiently understood.

MicheleGazelle
07-07-2009, 10:56 PM
My son and I got off enzymes. I have spoken with one other person whose child eventually stopped needing them. I have a few thoughts on how that happened for me and my son. The other person I talked to apparently had no idea how it happened. Since some percentage of folks start out pancreatic sufficient and become insufficient, it seems logical to me that it isn't simply "genetic" but that some process of deterioration leads to it. So presumably it is potentially reversible if sufficiently understood.

MicheleGazelle
07-07-2009, 10:56 PM
My son and I got off enzymes. I have spoken with one other person whose child eventually stopped needing them. I have a few thoughts on how that happened for me and my son. The other person I talked to apparently had no idea how it happened. Since some percentage of folks start out pancreatic sufficient and become insufficient, it seems logical to me that it isn't simply "genetic" but that some process of deterioration leads to it. So presumably it is potentially reversible if sufficiently understood.

MicheleGazelle
07-07-2009, 10:56 PM
My son and I got off enzymes. I have spoken with one other person whose child eventually stopped needing them. I have a few thoughts on how that happened for me and my son. The other person I talked to apparently had no idea how it happened. Since some percentage of folks start out pancreatic sufficient and become insufficient, it seems logical to me that it isn't simply "genetic" but that some process of deterioration leads to it. So presumably it is potentially reversible if sufficiently understood.

sasha
07-08-2009, 04:36 AM
interesting thoughts, Michele. thanks for the answers guys, i'll post it in the adult section

sasha
07-08-2009, 04:36 AM
interesting thoughts, Michele. thanks for the answers guys, i'll post it in the adult section

sasha
07-08-2009, 04:36 AM
interesting thoughts, Michele. thanks for the answers guys, i'll post it in the adult section

sasha
07-08-2009, 04:36 AM
interesting thoughts, Michele. thanks for the answers guys, i'll post it in the adult section

sasha
07-08-2009, 04:36 AM
interesting thoughts, Michele. thanks for the answers guys, i'll post it in the adult section

hmw
07-08-2009, 11:56 AM
There are known reasons for why most people with CF become pancreatic-insufficient. It is not something that is still left up in the air as far as guessing why the process occurs (i.e. is it genetic? Is it a process of deterioration?) It is part of the disease process of CF.

Not everyone with CF needs enzymes- a fortunate minority are still pancreatic-sufficient and don't- and there are other factors that can contribute when people with CF have trouble gaining/maintaining their weight, outside of pancreatic function. (For example, those with CF need substantially more calories than someone without CF of the same age/height to maintain their weight.) There are supportive things that we can do that can improve the digestive process in some cases for some people... but I wanted to point out that it's not still 'theoretic' as far as why pancreatic insufficiency occurs in the first place.

And given the progressive nature of the disease, without a way to address damage already done to the pancreas, I would not be too optimistic about this at this point of CF treatment, once one has reached the point of needing enzymes. I am not saying it's impossible- only your dr could tell you that- but I don't think it's common.

hmw
07-08-2009, 11:56 AM
There are known reasons for why most people with CF become pancreatic-insufficient. It is not something that is still left up in the air as far as guessing why the process occurs (i.e. is it genetic? Is it a process of deterioration?) It is part of the disease process of CF.

Not everyone with CF needs enzymes- a fortunate minority are still pancreatic-sufficient and don't- and there are other factors that can contribute when people with CF have trouble gaining/maintaining their weight, outside of pancreatic function. (For example, those with CF need substantially more calories than someone without CF of the same age/height to maintain their weight.) There are supportive things that we can do that can improve the digestive process in some cases for some people... but I wanted to point out that it's not still 'theoretic' as far as why pancreatic insufficiency occurs in the first place.

And given the progressive nature of the disease, without a way to address damage already done to the pancreas, I would not be too optimistic about this at this point of CF treatment, once one has reached the point of needing enzymes. I am not saying it's impossible- only your dr could tell you that- but I don't think it's common.

hmw
07-08-2009, 11:56 AM
There are known reasons for why most people with CF become pancreatic-insufficient. It is not something that is still left up in the air as far as guessing why the process occurs (i.e. is it genetic? Is it a process of deterioration?) It is part of the disease process of CF.

Not everyone with CF needs enzymes- a fortunate minority are still pancreatic-sufficient and don't- and there are other factors that can contribute when people with CF have trouble gaining/maintaining their weight, outside of pancreatic function. (For example, those with CF need substantially more calories than someone without CF of the same age/height to maintain their weight.) There are supportive things that we can do that can improve the digestive process in some cases for some people... but I wanted to point out that it's not still 'theoretic' as far as why pancreatic insufficiency occurs in the first place.

And given the progressive nature of the disease, without a way to address damage already done to the pancreas, I would not be too optimistic about this at this point of CF treatment, once one has reached the point of needing enzymes. I am not saying it's impossible- only your dr could tell you that- but I don't think it's common.

hmw
07-08-2009, 11:56 AM
There are known reasons for why most people with CF become pancreatic-insufficient. It is not something that is still left up in the air as far as guessing why the process occurs (i.e. is it genetic? Is it a process of deterioration?) It is part of the disease process of CF.

Not everyone with CF needs enzymes- a fortunate minority are still pancreatic-sufficient and don't- and there are other factors that can contribute when people with CF have trouble gaining/maintaining their weight, outside of pancreatic function. (For example, those with CF need substantially more calories than someone without CF of the same age/height to maintain their weight.) There are supportive things that we can do that can improve the digestive process in some cases for some people... but I wanted to point out that it's not still 'theoretic' as far as why pancreatic insufficiency occurs in the first place.

And given the progressive nature of the disease, without a way to address damage already done to the pancreas, I would not be too optimistic about this at this point of CF treatment, once one has reached the point of needing enzymes. I am not saying it's impossible- only your dr could tell you that- but I don't think it's common.

hmw
07-08-2009, 11:56 AM
There are known reasons for why most people with CF become pancreatic-insufficient. It is not something that is still left up in the air as far as guessing why the process occurs (i.e. is it genetic? Is it a process of deterioration?) It is part of the disease process of CF.
<br />
<br />Not everyone with CF needs enzymes- a fortunate minority are still pancreatic-sufficient and don't- and there are other factors that can contribute when people with CF have trouble gaining/maintaining their weight, outside of pancreatic function. (For example, those with CF need substantially more calories than someone without CF of the same age/height to maintain their weight.) There are supportive things that we can do that can improve the digestive process in some cases for some people... but I wanted to point out that it's not still 'theoretic' as far as why pancreatic insufficiency occurs in the first place.
<br />
<br />And given the progressive nature of the disease, without a way to address damage already done to the pancreas, I would not be too optimistic about this at this point of CF treatment, once one has reached the point of needing enzymes. I am not saying it's impossible- only your dr could tell you that- but I don't think it's common.

MicheleGazelle
07-08-2009, 05:47 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hmw</b></i>

There are known reasons for why most people with CF become pancreatic-insufficient. It is not something that is still left up in the air as far as guessing why the process occurs (i.e. is it genetic? Is it a process of deterioration?) It is part of the disease process of CF.

</end quote></div>

I'm curious: what specifically is currently believed to cause it? "Disease process" is rather vague.

Thanks in advance.

MicheleGazelle
07-08-2009, 05:47 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hmw</b></i>

There are known reasons for why most people with CF become pancreatic-insufficient. It is not something that is still left up in the air as far as guessing why the process occurs (i.e. is it genetic? Is it a process of deterioration?) It is part of the disease process of CF.

</end quote></div>

I'm curious: what specifically is currently believed to cause it? "Disease process" is rather vague.

Thanks in advance.

MicheleGazelle
07-08-2009, 05:47 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hmw</b></i>

There are known reasons for why most people with CF become pancreatic-insufficient. It is not something that is still left up in the air as far as guessing why the process occurs (i.e. is it genetic? Is it a process of deterioration?) It is part of the disease process of CF.

</end quote></div>

I'm curious: what specifically is currently believed to cause it? "Disease process" is rather vague.

Thanks in advance.

MicheleGazelle
07-08-2009, 05:47 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hmw</b></i>

There are known reasons for why most people with CF become pancreatic-insufficient. It is not something that is still left up in the air as far as guessing why the process occurs (i.e. is it genetic? Is it a process of deterioration?) It is part of the disease process of CF.

</end quote>

I'm curious: what specifically is currently believed to cause it? "Disease process" is rather vague.

Thanks in advance.

MicheleGazelle
07-08-2009, 05:47 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hmw</b></i>
<br />
<br />There are known reasons for why most people with CF become pancreatic-insufficient. It is not something that is still left up in the air as far as guessing why the process occurs (i.e. is it genetic? Is it a process of deterioration?) It is part of the disease process of CF.
<br />
<br /></end quote>
<br />
<br />I'm curious: what specifically is currently believed to cause it? "Disease process" is rather vague.
<br />
<br />Thanks in advance.

hmw
07-08-2009, 08:40 PM
What causes pancreatic insufficiency? Is that what you are asking me? Nearly every website/article about CF addresses that... <img src="i/expressions/face-icon-small-confused.gif" border="0">

Pancreatic insufficiency, defined, is "the inability of the exocrine pancreas to produce and/or transport enough digestive enzymes to break down food in the intestine and to allow its absorption." A basic definition of why this occurs with those who have CF, according to the CFF website is "A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food."

Since this is such a commonly known/medically accepted definition I don't quite understand where you are going with your question; whether you expect more of a response or if you are setting me up for something. I know that's only the most basic of explanations of course, but medical science has made enormous strides in understanding the more complex interactions that are taking place that cause this. (i.e. the overview of CF on the eMedicine website goes into more detail how the pancreas & digestive system is affected, as do countless other websites.)

At any rate, my real point in posting had been to clarify that the chain reaction of events that leads to one being PI is scientifically understood, not some nebulous mystery.

hmw
07-08-2009, 08:40 PM
What causes pancreatic insufficiency? Is that what you are asking me? Nearly every website/article about CF addresses that... <img src="i/expressions/face-icon-small-confused.gif" border="0">

Pancreatic insufficiency, defined, is "the inability of the exocrine pancreas to produce and/or transport enough digestive enzymes to break down food in the intestine and to allow its absorption." A basic definition of why this occurs with those who have CF, according to the CFF website is "A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food."

Since this is such a commonly known/medically accepted definition I don't quite understand where you are going with your question; whether you expect more of a response or if you are setting me up for something. I know that's only the most basic of explanations of course, but medical science has made enormous strides in understanding the more complex interactions that are taking place that cause this. (i.e. the overview of CF on the eMedicine website goes into more detail how the pancreas & digestive system is affected, as do countless other websites.)

At any rate, my real point in posting had been to clarify that the chain reaction of events that leads to one being PI is scientifically understood, not some nebulous mystery.

hmw
07-08-2009, 08:40 PM
What causes pancreatic insufficiency? Is that what you are asking me? Nearly every website/article about CF addresses that... <img src="i/expressions/face-icon-small-confused.gif" border="0">

Pancreatic insufficiency, defined, is "the inability of the exocrine pancreas to produce and/or transport enough digestive enzymes to break down food in the intestine and to allow its absorption." A basic definition of why this occurs with those who have CF, according to the CFF website is "A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food."

Since this is such a commonly known/medically accepted definition I don't quite understand where you are going with your question; whether you expect more of a response or if you are setting me up for something. I know that's only the most basic of explanations of course, but medical science has made enormous strides in understanding the more complex interactions that are taking place that cause this. (i.e. the overview of CF on the eMedicine website goes into more detail how the pancreas & digestive system is affected, as do countless other websites.)

At any rate, my real point in posting had been to clarify that the chain reaction of events that leads to one being PI is scientifically understood, not some nebulous mystery.

hmw
07-08-2009, 08:40 PM
What causes pancreatic insufficiency? Is that what you are asking me? Nearly every website/article about CF addresses that... <img src="i/expressions/face-icon-small-confused.gif" border="0">

Pancreatic insufficiency, defined, is "the inability of the exocrine pancreas to produce and/or transport enough digestive enzymes to break down food in the intestine and to allow its absorption." A basic definition of why this occurs with those who have CF, according to the CFF website is "A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food."

Since this is such a commonly known/medically accepted definition I don't quite understand where you are going with your question; whether you expect more of a response or if you are setting me up for something. I know that's only the most basic of explanations of course, but medical science has made enormous strides in understanding the more complex interactions that are taking place that cause this. (i.e. the overview of CF on the eMedicine website goes into more detail how the pancreas & digestive system is affected, as do countless other websites.)

At any rate, my real point in posting had been to clarify that the chain reaction of events that leads to one being PI is scientifically understood, not some nebulous mystery.

hmw
07-08-2009, 08:40 PM
What causes pancreatic insufficiency? Is that what you are asking me? Nearly every website/article about CF addresses that... <img src="i/expressions/face-icon-small-confused.gif" border="0">
<br />
<br />Pancreatic insufficiency, defined, is "the inability of the exocrine pancreas to produce and/or transport enough digestive enzymes to break down food in the intestine and to allow its absorption." A basic definition of why this occurs with those who have CF, according to the CFF website is "A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food."
<br />
<br />Since this is such a commonly known/medically accepted definition I don't quite understand where you are going with your question; whether you expect more of a response or if you are setting me up for something. I know that's only the most basic of explanations of course, but medical science has made enormous strides in understanding the more complex interactions that are taking place that cause this. (i.e. the overview of CF on the eMedicine website goes into more detail how the pancreas & digestive system is affected, as do countless other websites.)
<br />
<br />At any rate, my real point in posting had been to clarify that the chain reaction of events that leads to one being PI is scientifically understood, not some nebulous mystery.

MicheleGazelle
07-08-2009, 09:23 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hmw</b></i>

What causes pancreatic insufficiency? Is that what you are asking me? Nearly every website/article about CF addresses that...
</end quote></div>
I can't say I have seen any good explanations. I was hoping you had some solid info.
<div class="FTQUOTE"><begin quote>

Pancreatic insufficiency, defined, is "the inability of the exocrine pancreas to produce and/or transport enough digestive enzymes to break down food in the intestine and to allow its absorption."
</end quote></div>
That definition really doesn't tell me the mechanism at the cellular/chemical level which specifically causes this.
<div class="FTQUOTE"><begin quote>
A basic definition of why this occurs with those who have CF, according to the CFF website is "A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food."
</end quote></div>
One study I read about indicates that people with CF don't produce "too much" mucus, and indicated that, instead, they produce too little and that all the gunk in their lungs is phlegm (ie infection), not mucus. This second explanation fits better with my experience and makes more logical sense to me. So, since I consider this common definition of the problem to be in error, I don't believe it explains anything about pancreatic insufficiency.
<div class="FTQUOTE"><begin quote>
Since this is such a commonly known/medically accepted definition I don't quite understand where you are going with your question; whether you expect more of a response or if you are setting me up for something.
</end quote></div>
Although I have been attacked repeatedly in this forum, I don't recall doing any attacking. So I have no idea why you would think I am trying to set you up.
<div class="FTQUOTE"><begin quote>
I know that's only the most basic of explanations of course, but medical science has made enormous strides in understanding the more complex interactions that are taking place that cause this. (i.e. the overview of CF on the eMedicine website goes into more detail how the pancreas & digestive system is affected, as do countless other websites.)
</end quote></div>
I would appreciate any links you can provide with specific information about what is believed to cause pancreatic insufficiency in pwcf. I find that lots of studies are fundamentally flawed. But I am always interested in good information.

EDIT: I mean any info available on what they think causes someone who was pancreatic sufficient to become pancreatic insufficient. I am curious what the current mental model is for how and why that happens. I have not seen anything that indicates that anyone knows why this happens.
<div class="FTQUOTE"><begin quote>

At any rate, my real point in posting had been to clarify that the chain reaction of events that leads to one being PI is scientifically understood, not some nebulous mystery.</end quote></div>
Well, I am not aware of a good scientific explanation of it. Your post didn't help me understand it any better. I would still be extremely happy to get hard data on this.

Thanks for replying.

MicheleGazelle
07-08-2009, 09:23 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hmw</b></i>

What causes pancreatic insufficiency? Is that what you are asking me? Nearly every website/article about CF addresses that...
</end quote></div>
I can't say I have seen any good explanations. I was hoping you had some solid info.
<div class="FTQUOTE"><begin quote>

Pancreatic insufficiency, defined, is "the inability of the exocrine pancreas to produce and/or transport enough digestive enzymes to break down food in the intestine and to allow its absorption."
</end quote></div>
That definition really doesn't tell me the mechanism at the cellular/chemical level which specifically causes this.
<div class="FTQUOTE"><begin quote>
A basic definition of why this occurs with those who have CF, according to the CFF website is "A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food."
</end quote></div>
One study I read about indicates that people with CF don't produce "too much" mucus, and indicated that, instead, they produce too little and that all the gunk in their lungs is phlegm (ie infection), not mucus. This second explanation fits better with my experience and makes more logical sense to me. So, since I consider this common definition of the problem to be in error, I don't believe it explains anything about pancreatic insufficiency.
<div class="FTQUOTE"><begin quote>
Since this is such a commonly known/medically accepted definition I don't quite understand where you are going with your question; whether you expect more of a response or if you are setting me up for something.
</end quote></div>
Although I have been attacked repeatedly in this forum, I don't recall doing any attacking. So I have no idea why you would think I am trying to set you up.
<div class="FTQUOTE"><begin quote>
I know that's only the most basic of explanations of course, but medical science has made enormous strides in understanding the more complex interactions that are taking place that cause this. (i.e. the overview of CF on the eMedicine website goes into more detail how the pancreas & digestive system is affected, as do countless other websites.)
</end quote></div>
I would appreciate any links you can provide with specific information about what is believed to cause pancreatic insufficiency in pwcf. I find that lots of studies are fundamentally flawed. But I am always interested in good information.

EDIT: I mean any info available on what they think causes someone who was pancreatic sufficient to become pancreatic insufficient. I am curious what the current mental model is for how and why that happens. I have not seen anything that indicates that anyone knows why this happens.
<div class="FTQUOTE"><begin quote>

At any rate, my real point in posting had been to clarify that the chain reaction of events that leads to one being PI is scientifically understood, not some nebulous mystery.</end quote></div>
Well, I am not aware of a good scientific explanation of it. Your post didn't help me understand it any better. I would still be extremely happy to get hard data on this.

Thanks for replying.

MicheleGazelle
07-08-2009, 09:23 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hmw</b></i>

What causes pancreatic insufficiency? Is that what you are asking me? Nearly every website/article about CF addresses that...
</end quote></div>
I can't say I have seen any good explanations. I was hoping you had some solid info.
<div class="FTQUOTE"><begin quote>

Pancreatic insufficiency, defined, is "the inability of the exocrine pancreas to produce and/or transport enough digestive enzymes to break down food in the intestine and to allow its absorption."
</end quote></div>
That definition really doesn't tell me the mechanism at the cellular/chemical level which specifically causes this.
<div class="FTQUOTE"><begin quote>
A basic definition of why this occurs with those who have CF, according to the CFF website is "A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food."
</end quote></div>
One study I read about indicates that people with CF don't produce "too much" mucus, and indicated that, instead, they produce too little and that all the gunk in their lungs is phlegm (ie infection), not mucus. This second explanation fits better with my experience and makes more logical sense to me. So, since I consider this common definition of the problem to be in error, I don't believe it explains anything about pancreatic insufficiency.
<div class="FTQUOTE"><begin quote>
Since this is such a commonly known/medically accepted definition I don't quite understand where you are going with your question; whether you expect more of a response or if you are setting me up for something.
</end quote></div>
Although I have been attacked repeatedly in this forum, I don't recall doing any attacking. So I have no idea why you would think I am trying to set you up.
<div class="FTQUOTE"><begin quote>
I know that's only the most basic of explanations of course, but medical science has made enormous strides in understanding the more complex interactions that are taking place that cause this. (i.e. the overview of CF on the eMedicine website goes into more detail how the pancreas & digestive system is affected, as do countless other websites.)
</end quote></div>
I would appreciate any links you can provide with specific information about what is believed to cause pancreatic insufficiency in pwcf. I find that lots of studies are fundamentally flawed. But I am always interested in good information.

EDIT: I mean any info available on what they think causes someone who was pancreatic sufficient to become pancreatic insufficient. I am curious what the current mental model is for how and why that happens. I have not seen anything that indicates that anyone knows why this happens.
<div class="FTQUOTE"><begin quote>

At any rate, my real point in posting had been to clarify that the chain reaction of events that leads to one being PI is scientifically understood, not some nebulous mystery.</end quote></div>
Well, I am not aware of a good scientific explanation of it. Your post didn't help me understand it any better. I would still be extremely happy to get hard data on this.

Thanks for replying.

MicheleGazelle
07-08-2009, 09:23 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hmw</b></i>

What causes pancreatic insufficiency? Is that what you are asking me? Nearly every website/article about CF addresses that...
</end quote>
I can't say I have seen any good explanations. I was hoping you had some solid info.
<div class="FTQUOTE"><begin quote>

Pancreatic insufficiency, defined, is "the inability of the exocrine pancreas to produce and/or transport enough digestive enzymes to break down food in the intestine and to allow its absorption."
</end quote>
That definition really doesn't tell me the mechanism at the cellular/chemical level which specifically causes this.
<div class="FTQUOTE"><begin quote>
A basic definition of why this occurs with those who have CF, according to the CFF website is "A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food."
</end quote>
One study I read about indicates that people with CF don't produce "too much" mucus, and indicated that, instead, they produce too little and that all the gunk in their lungs is phlegm (ie infection), not mucus. This second explanation fits better with my experience and makes more logical sense to me. So, since I consider this common definition of the problem to be in error, I don't believe it explains anything about pancreatic insufficiency.
<div class="FTQUOTE"><begin quote>
Since this is such a commonly known/medically accepted definition I don't quite understand where you are going with your question; whether you expect more of a response or if you are setting me up for something.
</end quote>
Although I have been attacked repeatedly in this forum, I don't recall doing any attacking. So I have no idea why you would think I am trying to set you up.
<div class="FTQUOTE"><begin quote>
I know that's only the most basic of explanations of course, but medical science has made enormous strides in understanding the more complex interactions that are taking place that cause this. (i.e. the overview of CF on the eMedicine website goes into more detail how the pancreas & digestive system is affected, as do countless other websites.)
</end quote>
I would appreciate any links you can provide with specific information about what is believed to cause pancreatic insufficiency in pwcf. I find that lots of studies are fundamentally flawed. But I am always interested in good information.

EDIT: I mean any info available on what they think causes someone who was pancreatic sufficient to become pancreatic insufficient. I am curious what the current mental model is for how and why that happens. I have not seen anything that indicates that anyone knows why this happens.
<div class="FTQUOTE"><begin quote>

At any rate, my real point in posting had been to clarify that the chain reaction of events that leads to one being PI is scientifically understood, not some nebulous mystery.</end quote>
Well, I am not aware of a good scientific explanation of it. Your post didn't help me understand it any better. I would still be extremely happy to get hard data on this.

Thanks for replying.

MicheleGazelle
07-08-2009, 09:23 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>hmw</b></i>
<br />
<br />What causes pancreatic insufficiency? Is that what you are asking me? Nearly every website/article about CF addresses that...
<br /></end quote>
<br />I can't say I have seen any good explanations. I was hoping you had some solid info.
<br /><div class="FTQUOTE"><begin quote>
<br />
<br />Pancreatic insufficiency, defined, is "the inability of the exocrine pancreas to produce and/or transport enough digestive enzymes to break down food in the intestine and to allow its absorption."
<br /></end quote>
<br />That definition really doesn't tell me the mechanism at the cellular/chemical level which specifically causes this.
<br /><div class="FTQUOTE"><begin quote>
<br />A basic definition of why this occurs with those who have CF, according to the CFF website is "A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food."
<br /></end quote>
<br />One study I read about indicates that people with CF don't produce "too much" mucus, and indicated that, instead, they produce too little and that all the gunk in their lungs is phlegm (ie infection), not mucus. This second explanation fits better with my experience and makes more logical sense to me. So, since I consider this common definition of the problem to be in error, I don't believe it explains anything about pancreatic insufficiency.
<br /><div class="FTQUOTE"><begin quote>
<br />Since this is such a commonly known/medically accepted definition I don't quite understand where you are going with your question; whether you expect more of a response or if you are setting me up for something.
<br /></end quote>
<br />Although I have been attacked repeatedly in this forum, I don't recall doing any attacking. So I have no idea why you would think I am trying to set you up.
<br /><div class="FTQUOTE"><begin quote>
<br />I know that's only the most basic of explanations of course, but medical science has made enormous strides in understanding the more complex interactions that are taking place that cause this. (i.e. the overview of CF on the eMedicine website goes into more detail how the pancreas & digestive system is affected, as do countless other websites.)
<br /></end quote>
<br />I would appreciate any links you can provide with specific information about what is believed to cause pancreatic insufficiency in pwcf. I find that lots of studies are fundamentally flawed. But I am always interested in good information.
<br />
<br />EDIT: I mean any info available on what they think causes someone who was pancreatic sufficient to become pancreatic insufficient. I am curious what the current mental model is for how and why that happens. I have not seen anything that indicates that anyone knows why this happens.
<br /><div class="FTQUOTE"><begin quote>
<br />
<br />At any rate, my real point in posting had been to clarify that the chain reaction of events that leads to one being PI is scientifically understood, not some nebulous mystery.</end quote>
<br />Well, I am not aware of a good scientific explanation of it. Your post didn't help me understand it any better. I would still be extremely happy to get hard data on this.
<br />
<br />Thanks for replying.

Fran
09-08-2009, 07:39 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MicheleGazelle</b></i>

My son and I got off enzymes. I have spoken with one other person whose child eventually stopped needing them. I have a few thoughts on how that happened for me and my son. The other person I talked to apparently had no idea how it happened. Since some percentage of folks start out pancreatic sufficient and become insufficient, it seems logical to me that it isn't simply "genetic" but that some process of deterioration leads to it. So presumably it is potentially reversible if sufficiently understood.</end quote></div>

So, what about those who are born PI, that is with MI. That doesn't indicate deterioration ... it's something always there from birth. Can't take sea salt in utero ...

Fran
09-08-2009, 07:39 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MicheleGazelle</b></i>

My son and I got off enzymes. I have spoken with one other person whose child eventually stopped needing them. I have a few thoughts on how that happened for me and my son. The other person I talked to apparently had no idea how it happened. Since some percentage of folks start out pancreatic sufficient and become insufficient, it seems logical to me that it isn't simply "genetic" but that some process of deterioration leads to it. So presumably it is potentially reversible if sufficiently understood.</end quote></div>

So, what about those who are born PI, that is with MI. That doesn't indicate deterioration ... it's something always there from birth. Can't take sea salt in utero ...

Fran
09-08-2009, 07:39 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MicheleGazelle</b></i>

My son and I got off enzymes. I have spoken with one other person whose child eventually stopped needing them. I have a few thoughts on how that happened for me and my son. The other person I talked to apparently had no idea how it happened. Since some percentage of folks start out pancreatic sufficient and become insufficient, it seems logical to me that it isn't simply "genetic" but that some process of deterioration leads to it. So presumably it is potentially reversible if sufficiently understood.</end quote></div>

So, what about those who are born PI, that is with MI. That doesn't indicate deterioration ... it's something always there from birth. Can't take sea salt in utero ...

Fran
09-08-2009, 07:39 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MicheleGazelle</b></i>

My son and I got off enzymes. I have spoken with one other person whose child eventually stopped needing them. I have a few thoughts on how that happened for me and my son. The other person I talked to apparently had no idea how it happened. Since some percentage of folks start out pancreatic sufficient and become insufficient, it seems logical to me that it isn't simply "genetic" but that some process of deterioration leads to it. So presumably it is potentially reversible if sufficiently understood.</end quote>

So, what about those who are born PI, that is with MI. That doesn't indicate deterioration ... it's something always there from birth. Can't take sea salt in utero ...

Fran
09-08-2009, 07:39 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MicheleGazelle</b></i>
<br />
<br />My son and I got off enzymes. I have spoken with one other person whose child eventually stopped needing them. I have a few thoughts on how that happened for me and my son. The other person I talked to apparently had no idea how it happened. Since some percentage of folks start out pancreatic sufficient and become insufficient, it seems logical to me that it isn't simply "genetic" but that some process of deterioration leads to it. So presumably it is potentially reversible if sufficiently understood.</end quote>
<br />
<br />So, what about those who are born PI, that is with MI. That doesn't indicate deterioration ... it's something always there from birth. Can't take sea salt in utero ...

hmw
09-08-2009, 12:37 PM
I hadn't replied to this originally because I did not know what I could say that would make a difference despite what I was reading from pretty much every respectable source I could find. But since this is bumped up again...

<div class="FTQUOTE"><begin quote><div class="FTQUOTE"><begin quote>A basic definition of why this occurs with those who have CF, according to the CFF website is "A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food."</end quote></div>

One study I read about indicates that people with CF don't produce "too much" mucus, and indicated that, instead, they produce too little and that all the gunk in their lungs is phlegm (ie infection), not mucus. This second explanation fits better with my experience and makes more logical sense to me. So, since I consider this common definition of the problem to be in error, I don't believe it explains anything about pancreatic insufficiency.</end quote></div>The CFF quote didn't say 'too much' there- they said unusually thick, sticky mucus. This is caused by the genetic defect that causes CF. This is NOT limited to the lungs. This defect is present throughout the body- thus affecting exocrine cells in many parts of the body, resulting in these thick, sticky secretions.

'Insufficiency' is defined on 'wordnet' as "(pathology) inability of a bodily part or organ to function normally." With CF patients, it's a physical chain of events, as in when there is scarring or damage done to the pancreas, delivery of pancreatic enzymes to the intestines is affected. When not enough gets there, there is an insufficient amount in the intestine to properly digest the food. I don't know what the mystery is there: abnormal secretions caused by CF damage the pancreas, enzymes don't reach intestine, food doesn't get properly digested.

We don't have to guess as to whether this is happening, either. This can be directly observed in several ways- by physically testing the stool either for the presence of pancreatic enzymes or for undigested fat, or by scoping & examining the pancreas, etc. These are medically accepted tests. Very basic overview of these tests: <a target=_blank class=ftalternatingbarlinklarge href="http://www.labtestsonline.org/understanding/conditions/pancreatic_insuf-2.html">Tests for Pancreatic Insufficiency</a> . I can't explain everything on a molecular level as you ask... I am not a scientist. But I do understand what I hear from my child's drs, and what I read from many respected sources and it all says pretty much the same thing; there doesn't seem to be much controversy about this topic at all. If there is, the studies are few and far between, compared to the ones that are generally accepted to the CF medical community.

<div class="FTQUOTE"><begin quote>This second explanation fits better with my experience and makes more logical sense to me. So, since I consider this common definition of the problem to be in error</end quote></div>I quoted a portion again from your post just to make the point of why I hesitated to reply earlier... it seems that the only studies you would want are ones that will support your experiences and beliefs, and will find fault with others even if they have studied proof behind them or wide support within the CF community.

added note: there is a different disease, called <a target=_blank class=ftalternatingbarlinklarge href="http://www.shwachman.org/">Shwachman-Diamond Syndrome</a>, where PI is present during childhood that for some is reversed during adulthood. HOWEVER, the cause of the PI is different than that of CF.

hmw
09-08-2009, 12:37 PM
I hadn't replied to this originally because I did not know what I could say that would make a difference despite what I was reading from pretty much every respectable source I could find. But since this is bumped up again...

<div class="FTQUOTE"><begin quote><div class="FTQUOTE"><begin quote>A basic definition of why this occurs with those who have CF, according to the CFF website is "A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food."</end quote></div>

One study I read about indicates that people with CF don't produce "too much" mucus, and indicated that, instead, they produce too little and that all the gunk in their lungs is phlegm (ie infection), not mucus. This second explanation fits better with my experience and makes more logical sense to me. So, since I consider this common definition of the problem to be in error, I don't believe it explains anything about pancreatic insufficiency.</end quote></div>The CFF quote didn't say 'too much' there- they said unusually thick, sticky mucus. This is caused by the genetic defect that causes CF. This is NOT limited to the lungs. This defect is present throughout the body- thus affecting exocrine cells in many parts of the body, resulting in these thick, sticky secretions.

'Insufficiency' is defined on 'wordnet' as "(pathology) inability of a bodily part or organ to function normally." With CF patients, it's a physical chain of events, as in when there is scarring or damage done to the pancreas, delivery of pancreatic enzymes to the intestines is affected. When not enough gets there, there is an insufficient amount in the intestine to properly digest the food. I don't know what the mystery is there: abnormal secretions caused by CF damage the pancreas, enzymes don't reach intestine, food doesn't get properly digested.

We don't have to guess as to whether this is happening, either. This can be directly observed in several ways- by physically testing the stool either for the presence of pancreatic enzymes or for undigested fat, or by scoping & examining the pancreas, etc. These are medically accepted tests. Very basic overview of these tests: <a target=_blank class=ftalternatingbarlinklarge href="http://www.labtestsonline.org/understanding/conditions/pancreatic_insuf-2.html">Tests for Pancreatic Insufficiency</a> . I can't explain everything on a molecular level as you ask... I am not a scientist. But I do understand what I hear from my child's drs, and what I read from many respected sources and it all says pretty much the same thing; there doesn't seem to be much controversy about this topic at all. If there is, the studies are few and far between, compared to the ones that are generally accepted to the CF medical community.

<div class="FTQUOTE"><begin quote>This second explanation fits better with my experience and makes more logical sense to me. So, since I consider this common definition of the problem to be in error</end quote></div>I quoted a portion again from your post just to make the point of why I hesitated to reply earlier... it seems that the only studies you would want are ones that will support your experiences and beliefs, and will find fault with others even if they have studied proof behind them or wide support within the CF community.

added note: there is a different disease, called <a target=_blank class=ftalternatingbarlinklarge href="http://www.shwachman.org/">Shwachman-Diamond Syndrome</a>, where PI is present during childhood that for some is reversed during adulthood. HOWEVER, the cause of the PI is different than that of CF.

hmw
09-08-2009, 12:37 PM
I hadn't replied to this originally because I did not know what I could say that would make a difference despite what I was reading from pretty much every respectable source I could find. But since this is bumped up again...

<div class="FTQUOTE"><begin quote><div class="FTQUOTE"><begin quote>A basic definition of why this occurs with those who have CF, according to the CFF website is "A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food."</end quote></div>

One study I read about indicates that people with CF don't produce "too much" mucus, and indicated that, instead, they produce too little and that all the gunk in their lungs is phlegm (ie infection), not mucus. This second explanation fits better with my experience and makes more logical sense to me. So, since I consider this common definition of the problem to be in error, I don't believe it explains anything about pancreatic insufficiency.</end quote></div>The CFF quote didn't say 'too much' there- they said unusually thick, sticky mucus. This is caused by the genetic defect that causes CF. This is NOT limited to the lungs. This defect is present throughout the body- thus affecting exocrine cells in many parts of the body, resulting in these thick, sticky secretions.

'Insufficiency' is defined on 'wordnet' as "(pathology) inability of a bodily part or organ to function normally." With CF patients, it's a physical chain of events, as in when there is scarring or damage done to the pancreas, delivery of pancreatic enzymes to the intestines is affected. When not enough gets there, there is an insufficient amount in the intestine to properly digest the food. I don't know what the mystery is there: abnormal secretions caused by CF damage the pancreas, enzymes don't reach intestine, food doesn't get properly digested.

We don't have to guess as to whether this is happening, either. This can be directly observed in several ways- by physically testing the stool either for the presence of pancreatic enzymes or for undigested fat, or by scoping & examining the pancreas, etc. These are medically accepted tests. Very basic overview of these tests: <a target=_blank class=ftalternatingbarlinklarge href="http://www.labtestsonline.org/understanding/conditions/pancreatic_insuf-2.html">Tests for Pancreatic Insufficiency</a> . I can't explain everything on a molecular level as you ask... I am not a scientist. But I do understand what I hear from my child's drs, and what I read from many respected sources and it all says pretty much the same thing; there doesn't seem to be much controversy about this topic at all. If there is, the studies are few and far between, compared to the ones that are generally accepted to the CF medical community.

<div class="FTQUOTE"><begin quote>This second explanation fits better with my experience and makes more logical sense to me. So, since I consider this common definition of the problem to be in error</end quote></div>I quoted a portion again from your post just to make the point of why I hesitated to reply earlier... it seems that the only studies you would want are ones that will support your experiences and beliefs, and will find fault with others even if they have studied proof behind them or wide support within the CF community.

added note: there is a different disease, called <a target=_blank class=ftalternatingbarlinklarge href="http://www.shwachman.org/">Shwachman-Diamond Syndrome</a>, where PI is present during childhood that for some is reversed during adulthood. HOWEVER, the cause of the PI is different than that of CF.

hmw
09-08-2009, 12:37 PM
I hadn't replied to this originally because I did not know what I could say that would make a difference despite what I was reading from pretty much every respectable source I could find. But since this is bumped up again...

<div class="FTQUOTE"><begin quote><div class="FTQUOTE"><begin quote>A basic definition of why this occurs with those who have CF, according to the CFF website is "A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food."</end quote>

One study I read about indicates that people with CF don't produce "too much" mucus, and indicated that, instead, they produce too little and that all the gunk in their lungs is phlegm (ie infection), not mucus. This second explanation fits better with my experience and makes more logical sense to me. So, since I consider this common definition of the problem to be in error, I don't believe it explains anything about pancreatic insufficiency.</end quote>The CFF quote didn't say 'too much' there- they said unusually thick, sticky mucus. This is caused by the genetic defect that causes CF. This is NOT limited to the lungs. This defect is present throughout the body- thus affecting exocrine cells in many parts of the body, resulting in these thick, sticky secretions.

'Insufficiency' is defined on 'wordnet' as "(pathology) inability of a bodily part or organ to function normally." With CF patients, it's a physical chain of events, as in when there is scarring or damage done to the pancreas, delivery of pancreatic enzymes to the intestines is affected. When not enough gets there, there is an insufficient amount in the intestine to properly digest the food. I don't know what the mystery is there: abnormal secretions caused by CF damage the pancreas, enzymes don't reach intestine, food doesn't get properly digested.

We don't have to guess as to whether this is happening, either. This can be directly observed in several ways- by physically testing the stool either for the presence of pancreatic enzymes or for undigested fat, or by scoping & examining the pancreas, etc. These are medically accepted tests. Very basic overview of these tests: <a target=_blank class=ftalternatingbarlinklarge href="http://www.labtestsonline.org/understanding/conditions/pancreatic_insuf-2.html">Tests for Pancreatic Insufficiency</a> . I can't explain everything on a molecular level as you ask... I am not a scientist. But I do understand what I hear from my child's drs, and what I read from many respected sources and it all says pretty much the same thing; there doesn't seem to be much controversy about this topic at all. If there is, the studies are few and far between, compared to the ones that are generally accepted to the CF medical community.

<div class="FTQUOTE"><begin quote>This second explanation fits better with my experience and makes more logical sense to me. So, since I consider this common definition of the problem to be in error</end quote>I quoted a portion again from your post just to make the point of why I hesitated to reply earlier... it seems that the only studies you would want are ones that will support your experiences and beliefs, and will find fault with others even if they have studied proof behind them or wide support within the CF community.

added note: there is a different disease, called <a target=_blank class=ftalternatingbarlinklarge href="http://www.shwachman.org/">Shwachman-Diamond Syndrome</a>, where PI is present during childhood that for some is reversed during adulthood. HOWEVER, the cause of the PI is different than that of CF.

hmw
09-08-2009, 12:37 PM
I hadn't replied to this originally because I did not know what I could say that would make a difference despite what I was reading from pretty much every respectable source I could find. But since this is bumped up again...
<br />
<br /><div class="FTQUOTE"><begin quote><div class="FTQUOTE"><begin quote>A basic definition of why this occurs with those who have CF, according to the CFF website is "A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food."</end quote>
<br />
<br />One study I read about indicates that people with CF don't produce "too much" mucus, and indicated that, instead, they produce too little and that all the gunk in their lungs is phlegm (ie infection), not mucus. This second explanation fits better with my experience and makes more logical sense to me. So, since I consider this common definition of the problem to be in error, I don't believe it explains anything about pancreatic insufficiency.</end quote>The CFF quote didn't say 'too much' there- they said unusually thick, sticky mucus. This is caused by the genetic defect that causes CF. This is NOT limited to the lungs. This defect is present throughout the body- thus affecting exocrine cells in many parts of the body, resulting in these thick, sticky secretions.
<br />
<br />'Insufficiency' is defined on 'wordnet' as "(pathology) inability of a bodily part or organ to function normally." With CF patients, it's a physical chain of events, as in when there is scarring or damage done to the pancreas, delivery of pancreatic enzymes to the intestines is affected. When not enough gets there, there is an insufficient amount in the intestine to properly digest the food. I don't know what the mystery is there: abnormal secretions caused by CF damage the pancreas, enzymes don't reach intestine, food doesn't get properly digested.
<br />
<br />We don't have to guess as to whether this is happening, either. This can be directly observed in several ways- by physically testing the stool either for the presence of pancreatic enzymes or for undigested fat, or by scoping & examining the pancreas, etc. These are medically accepted tests. Very basic overview of these tests: <a target=_blank class=ftalternatingbarlinklarge href="http://www.labtestsonline.org/understanding/conditions/pancreatic_insuf-2.html">Tests for Pancreatic Insufficiency</a> . I can't explain everything on a molecular level as you ask... I am not a scientist. But I do understand what I hear from my child's drs, and what I read from many respected sources and it all says pretty much the same thing; there doesn't seem to be much controversy about this topic at all. If there is, the studies are few and far between, compared to the ones that are generally accepted to the CF medical community.
<br />
<br /><div class="FTQUOTE"><begin quote>This second explanation fits better with my experience and makes more logical sense to me. So, since I consider this common definition of the problem to be in error</end quote>I quoted a portion again from your post just to make the point of why I hesitated to reply earlier... it seems that the only studies you would want are ones that will support your experiences and beliefs, and will find fault with others even if they have studied proof behind them or wide support within the CF community.
<br />
<br />added note: there is a different disease, called <a target=_blank class=ftalternatingbarlinklarge href="http://www.shwachman.org/">Shwachman-Diamond Syndrome</a>, where PI is present during childhood that for some is reversed during adulthood. HOWEVER, the cause of the PI is different than that of CF.

MicheleGazelle
09-10-2009, 12:26 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Fran</b></i>

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



My son and I got off enzymes. I have spoken with one other person whose child eventually stopped needing them. I have a few thoughts on how that happened for me and my son. The other person I talked to apparently had no idea how it happened. Since some percentage of folks start out pancreatic sufficient and become insufficient, it seems logical to me that it isn't simply "genetic" but that some process of deterioration leads to it. So presumably it is potentially reversible if sufficiently understood.</end quote></div>



So, what about those who are born PI, that is with MI. That doesn't indicate deterioration ... it's something always there from birth. Can't take sea salt in utero ...</end quote></div>
Potentially reversible doesn't mean reversible in all cases. If there is sufficient damage present from birth, maybe it can't be reversed. I just don't think it makes sense to assume that people can only deteriorate and there is no hope of improvement. And it also doesn't make logical sense to me to assume that lifelong deterioration (ie over many years) is purely genetic in nature.

hmw: No, I am not really looking for things that simply support my view. I look for things that make logical sense to me. And a lot of the explanations I see boil down to just blaming ones genes as the entire explanation, which doesn't begin to account for different outcomes. Since different outcomes do occur, it just doesn't make sense to me to dismiss environmental factors and say it is all dictated by the genes.

I regret the conversation hasn't cast any light on anything for me. But thank you for replying.

MicheleGazelle
09-10-2009, 12:26 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Fran</b></i>

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



My son and I got off enzymes. I have spoken with one other person whose child eventually stopped needing them. I have a few thoughts on how that happened for me and my son. The other person I talked to apparently had no idea how it happened. Since some percentage of folks start out pancreatic sufficient and become insufficient, it seems logical to me that it isn't simply "genetic" but that some process of deterioration leads to it. So presumably it is potentially reversible if sufficiently understood.</end quote></div>



So, what about those who are born PI, that is with MI. That doesn't indicate deterioration ... it's something always there from birth. Can't take sea salt in utero ...</end quote></div>
Potentially reversible doesn't mean reversible in all cases. If there is sufficient damage present from birth, maybe it can't be reversed. I just don't think it makes sense to assume that people can only deteriorate and there is no hope of improvement. And it also doesn't make logical sense to me to assume that lifelong deterioration (ie over many years) is purely genetic in nature.

hmw: No, I am not really looking for things that simply support my view. I look for things that make logical sense to me. And a lot of the explanations I see boil down to just blaming ones genes as the entire explanation, which doesn't begin to account for different outcomes. Since different outcomes do occur, it just doesn't make sense to me to dismiss environmental factors and say it is all dictated by the genes.

I regret the conversation hasn't cast any light on anything for me. But thank you for replying.

MicheleGazelle
09-10-2009, 12:26 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Fran</b></i>

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



My son and I got off enzymes. I have spoken with one other person whose child eventually stopped needing them. I have a few thoughts on how that happened for me and my son. The other person I talked to apparently had no idea how it happened. Since some percentage of folks start out pancreatic sufficient and become insufficient, it seems logical to me that it isn't simply "genetic" but that some process of deterioration leads to it. So presumably it is potentially reversible if sufficiently understood.</end quote></div>



So, what about those who are born PI, that is with MI. That doesn't indicate deterioration ... it's something always there from birth. Can't take sea salt in utero ...</end quote></div>
Potentially reversible doesn't mean reversible in all cases. If there is sufficient damage present from birth, maybe it can't be reversed. I just don't think it makes sense to assume that people can only deteriorate and there is no hope of improvement. And it also doesn't make logical sense to me to assume that lifelong deterioration (ie over many years) is purely genetic in nature.

hmw: No, I am not really looking for things that simply support my view. I look for things that make logical sense to me. And a lot of the explanations I see boil down to just blaming ones genes as the entire explanation, which doesn't begin to account for different outcomes. Since different outcomes do occur, it just doesn't make sense to me to dismiss environmental factors and say it is all dictated by the genes.

I regret the conversation hasn't cast any light on anything for me. But thank you for replying.

MicheleGazelle
09-10-2009, 12:26 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Fran</b></i>

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



My son and I got off enzymes. I have spoken with one other person whose child eventually stopped needing them. I have a few thoughts on how that happened for me and my son. The other person I talked to apparently had no idea how it happened. Since some percentage of folks start out pancreatic sufficient and become insufficient, it seems logical to me that it isn't simply "genetic" but that some process of deterioration leads to it. So presumably it is potentially reversible if sufficiently understood.</end quote>



So, what about those who are born PI, that is with MI. That doesn't indicate deterioration ... it's something always there from birth. Can't take sea salt in utero ...</end quote>
Potentially reversible doesn't mean reversible in all cases. If there is sufficient damage present from birth, maybe it can't be reversed. I just don't think it makes sense to assume that people can only deteriorate and there is no hope of improvement. And it also doesn't make logical sense to me to assume that lifelong deterioration (ie over many years) is purely genetic in nature.

hmw: No, I am not really looking for things that simply support my view. I look for things that make logical sense to me. And a lot of the explanations I see boil down to just blaming ones genes as the entire explanation, which doesn't begin to account for different outcomes. Since different outcomes do occur, it just doesn't make sense to me to dismiss environmental factors and say it is all dictated by the genes.

I regret the conversation hasn't cast any light on anything for me. But thank you for replying.

MicheleGazelle
09-10-2009, 12:26 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Fran</b></i>
<br />
<br /><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MicheleGazelle</b></i>
<br />
<br />
<br />
<br />My son and I got off enzymes. I have spoken with one other person whose child eventually stopped needing them. I have a few thoughts on how that happened for me and my son. The other person I talked to apparently had no idea how it happened. Since some percentage of folks start out pancreatic sufficient and become insufficient, it seems logical to me that it isn't simply "genetic" but that some process of deterioration leads to it. So presumably it is potentially reversible if sufficiently understood.</end quote>
<br />
<br />
<br />
<br />So, what about those who are born PI, that is with MI. That doesn't indicate deterioration ... it's something always there from birth. Can't take sea salt in utero ...</end quote>
<br />Potentially reversible doesn't mean reversible in all cases. If there is sufficient damage present from birth, maybe it can't be reversed. I just don't think it makes sense to assume that people can only deteriorate and there is no hope of improvement. And it also doesn't make logical sense to me to assume that lifelong deterioration (ie over many years) is purely genetic in nature.
<br />
<br />hmw: No, I am not really looking for things that simply support my view. I look for things that make logical sense to me. And a lot of the explanations I see boil down to just blaming ones genes as the entire explanation, which doesn't begin to account for different outcomes. Since different outcomes do occur, it just doesn't make sense to me to dismiss environmental factors and say it is all dictated by the genes.
<br />
<br />I regret the conversation hasn't cast any light on anything for me. But thank you for replying.

fuddlynn
09-25-2009, 11:35 AM
MicheleGazelle, I am as sorry as you are that you got stuck in such an endless babbling. You had to spend even more time on this topic than I did.

I too would be interested to know if the thick sticky mucos could possibly be reversed that causes the PI as that would provide me tremendous hope.

Being so dependent on something so expensive is not a good feeling.

fuddlynn
09-25-2009, 11:35 AM
MicheleGazelle, I am as sorry as you are that you got stuck in such an endless babbling. You had to spend even more time on this topic than I did.

I too would be interested to know if the thick sticky mucos could possibly be reversed that causes the PI as that would provide me tremendous hope.

Being so dependent on something so expensive is not a good feeling.

fuddlynn
09-25-2009, 11:35 AM
MicheleGazelle, I am as sorry as you are that you got stuck in such an endless babbling. You had to spend even more time on this topic than I did.

I too would be interested to know if the thick sticky mucos could possibly be reversed that causes the PI as that would provide me tremendous hope.

Being so dependent on something so expensive is not a good feeling.

fuddlynn
09-25-2009, 11:35 AM
MicheleGazelle, I am as sorry as you are that you got stuck in such an endless babbling. You had to spend even more time on this topic than I did.

I too would be interested to know if the thick sticky mucos could possibly be reversed that causes the PI as that would provide me tremendous hope.

Being so dependent on something so expensive is not a good feeling.

fuddlynn
09-25-2009, 11:35 AM
MicheleGazelle, I am as sorry as you are that you got stuck in such an endless babbling. You had to spend even more time on this topic than I did.
<br />
<br />I too would be interested to know if the thick sticky mucos could possibly be reversed that causes the PI as that would provide me tremendous hope.
<br />
<br />Being so dependent on something so expensive is not a good feeling.

MicheleGazelle
09-27-2009, 08:33 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>fuddlynn</b></i>
I too would be interested to know if the thick sticky mucos could possibly be reversed that causes the PI as that would provide me tremendous hope.
</end quote></div>

My opinion:
Thick, sticky mucus is due to inadequate nutritional support for healthy mucus. Mucus is supposed to be thin and slimy, not thick and sticky. Adequate water and adequate amounts of healthy salt can help change the consistency of mucus to what it is supposed to be. One of the things I did was switch to sea salt. For some months, I took fairly high quantities of it. Initially, I coughed up a lot of stuff and had a lot of diarrhea. Now that my mucus production is healthier, I am generally healthier.

Mucus lines the entire gut, not just the respiratory system. So supporting the healthy production of mucus didn't just help my gut issues. It also helped my respiratory issues. I believe that inadequate production of healthy mucus is one of the primary pathways to infection in people with CF. Mucus is supposed to coat the mucus membranes. My understanding is that, when dry, mucus membranes are more vulnerable to infection than other tissues.

My son was able to get off digestive enzymes largely by switching to sea salt and eliminating yeast from his diet. He was in a lot better shape than I was. On top of sea salt and limiting yeast in the diet, I also had to have glyconutrients and coconut oil before I was able to get off. Prior to that, I had spent many months on a yeast elimination diet to try to clean up my gut after having been on a lot of medication. Part of what I did for that: Ate organic yogurt twice a day and ate a big helping of lettuce at least 5 days a week.

MicheleGazelle
09-27-2009, 08:33 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>fuddlynn</b></i>
I too would be interested to know if the thick sticky mucos could possibly be reversed that causes the PI as that would provide me tremendous hope.
</end quote></div>

My opinion:
Thick, sticky mucus is due to inadequate nutritional support for healthy mucus. Mucus is supposed to be thin and slimy, not thick and sticky. Adequate water and adequate amounts of healthy salt can help change the consistency of mucus to what it is supposed to be. One of the things I did was switch to sea salt. For some months, I took fairly high quantities of it. Initially, I coughed up a lot of stuff and had a lot of diarrhea. Now that my mucus production is healthier, I am generally healthier.

Mucus lines the entire gut, not just the respiratory system. So supporting the healthy production of mucus didn't just help my gut issues. It also helped my respiratory issues. I believe that inadequate production of healthy mucus is one of the primary pathways to infection in people with CF. Mucus is supposed to coat the mucus membranes. My understanding is that, when dry, mucus membranes are more vulnerable to infection than other tissues.

My son was able to get off digestive enzymes largely by switching to sea salt and eliminating yeast from his diet. He was in a lot better shape than I was. On top of sea salt and limiting yeast in the diet, I also had to have glyconutrients and coconut oil before I was able to get off. Prior to that, I had spent many months on a yeast elimination diet to try to clean up my gut after having been on a lot of medication. Part of what I did for that: Ate organic yogurt twice a day and ate a big helping of lettuce at least 5 days a week.

MicheleGazelle
09-27-2009, 08:33 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>fuddlynn</b></i>
I too would be interested to know if the thick sticky mucos could possibly be reversed that causes the PI as that would provide me tremendous hope.
</end quote></div>

My opinion:
Thick, sticky mucus is due to inadequate nutritional support for healthy mucus. Mucus is supposed to be thin and slimy, not thick and sticky. Adequate water and adequate amounts of healthy salt can help change the consistency of mucus to what it is supposed to be. One of the things I did was switch to sea salt. For some months, I took fairly high quantities of it. Initially, I coughed up a lot of stuff and had a lot of diarrhea. Now that my mucus production is healthier, I am generally healthier.

Mucus lines the entire gut, not just the respiratory system. So supporting the healthy production of mucus didn't just help my gut issues. It also helped my respiratory issues. I believe that inadequate production of healthy mucus is one of the primary pathways to infection in people with CF. Mucus is supposed to coat the mucus membranes. My understanding is that, when dry, mucus membranes are more vulnerable to infection than other tissues.

My son was able to get off digestive enzymes largely by switching to sea salt and eliminating yeast from his diet. He was in a lot better shape than I was. On top of sea salt and limiting yeast in the diet, I also had to have glyconutrients and coconut oil before I was able to get off. Prior to that, I had spent many months on a yeast elimination diet to try to clean up my gut after having been on a lot of medication. Part of what I did for that: Ate organic yogurt twice a day and ate a big helping of lettuce at least 5 days a week.

MicheleGazelle
09-27-2009, 08:33 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>fuddlynn</b></i>
I too would be interested to know if the thick sticky mucos could possibly be reversed that causes the PI as that would provide me tremendous hope.
</end quote>

My opinion:
Thick, sticky mucus is due to inadequate nutritional support for healthy mucus. Mucus is supposed to be thin and slimy, not thick and sticky. Adequate water and adequate amounts of healthy salt can help change the consistency of mucus to what it is supposed to be. One of the things I did was switch to sea salt. For some months, I took fairly high quantities of it. Initially, I coughed up a lot of stuff and had a lot of diarrhea. Now that my mucus production is healthier, I am generally healthier.

Mucus lines the entire gut, not just the respiratory system. So supporting the healthy production of mucus didn't just help my gut issues. It also helped my respiratory issues. I believe that inadequate production of healthy mucus is one of the primary pathways to infection in people with CF. Mucus is supposed to coat the mucus membranes. My understanding is that, when dry, mucus membranes are more vulnerable to infection than other tissues.

My son was able to get off digestive enzymes largely by switching to sea salt and eliminating yeast from his diet. He was in a lot better shape than I was. On top of sea salt and limiting yeast in the diet, I also had to have glyconutrients and coconut oil before I was able to get off. Prior to that, I had spent many months on a yeast elimination diet to try to clean up my gut after having been on a lot of medication. Part of what I did for that: Ate organic yogurt twice a day and ate a big helping of lettuce at least 5 days a week.

MicheleGazelle
09-27-2009, 08:33 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>fuddlynn</b></i>
<br /> I too would be interested to know if the thick sticky mucos could possibly be reversed that causes the PI as that would provide me tremendous hope.
<br /></end quote>
<br />
<br />My opinion:
<br />Thick, sticky mucus is due to inadequate nutritional support for healthy mucus. Mucus is supposed to be thin and slimy, not thick and sticky. Adequate water and adequate amounts of healthy salt can help change the consistency of mucus to what it is supposed to be. One of the things I did was switch to sea salt. For some months, I took fairly high quantities of it. Initially, I coughed up a lot of stuff and had a lot of diarrhea. Now that my mucus production is healthier, I am generally healthier.
<br />
<br />Mucus lines the entire gut, not just the respiratory system. So supporting the healthy production of mucus didn't just help my gut issues. It also helped my respiratory issues. I believe that inadequate production of healthy mucus is one of the primary pathways to infection in people with CF. Mucus is supposed to coat the mucus membranes. My understanding is that, when dry, mucus membranes are more vulnerable to infection than other tissues.
<br />
<br />My son was able to get off digestive enzymes largely by switching to sea salt and eliminating yeast from his diet. He was in a lot better shape than I was. On top of sea salt and limiting yeast in the diet, I also had to have glyconutrients and coconut oil before I was able to get off. Prior to that, I had spent many months on a yeast elimination diet to try to clean up my gut after having been on a lot of medication. Part of what I did for that: Ate organic yogurt twice a day and ate a big helping of lettuce at least 5 days a week.

ymikhale
09-30-2009, 06:25 PM
I know that babies can change their pancreatic status: ma daughter when she was born had fecal elastase of 60 and a year later it was at 450 (almost normal person's)

ymikhale
09-30-2009, 06:25 PM
I know that babies can change their pancreatic status: ma daughter when she was born had fecal elastase of 60 and a year later it was at 450 (almost normal person's)

ymikhale
09-30-2009, 06:25 PM
I know that babies can change their pancreatic status: ma daughter when she was born had fecal elastase of 60 and a year later it was at 450 (almost normal person's)

ymikhale
09-30-2009, 06:25 PM
I know that babies can change their pancreatic status: ma daughter when she was born had fecal elastase of 60 and a year later it was at 450 (almost normal person's)

ymikhale
09-30-2009, 06:25 PM
I know that babies can change their pancreatic status: ma daughter when she was born had fecal elastase of 60 and a year later it was at 450 (almost normal person's)