terrified that i may have cf

runner82 · Aug 25, 2009

Hello there. I'm a healthy 27 year old male, former college athlete and currently work as a US Postal Carrier and still enjoy running, so I am very active. However a few things worry me.

I have stomach issues. My abdomen has been feeling funny and after I eat a meal I wind up passing huge amounts of gas and feeling bloated. Some of my stools are loose and some bulky, however some are normal. I have had an abdominal ultrasound and colonoscopy done which came back normal.

I also deal with acid reflux and burp a lot after meals. It seems like I have a lot of mucus, but I don't know if it's related to my diet or not. What is the sticky CF mucus like?

I do feel kind of sluggish. I've been working my way back into shape after a layoff with my running. At my peak I was running mid 15s for 5k, right now I'm running around 16:30 and struggling with some workouts. Perhaps I am worrying too much, I dunno..Feels like I sweat a lot too, salty sweat, but maybe its from being active.

Would a blood test show signs of CF? Or the colonoscopy? Or is the sweat test the only way to find out? where is the sweat test done and how would I go about it? Thanks for the advice.

runner82 · Aug 25, 2009

Hello there. I'm a healthy 27 year old male, former college athlete and currently work as a US Postal Carrier and still enjoy running, so I am very active. However a few things worry me.

I have stomach issues. My abdomen has been feeling funny and after I eat a meal I wind up passing huge amounts of gas and feeling bloated. Some of my stools are loose and some bulky, however some are normal. I have had an abdominal ultrasound and colonoscopy done which came back normal.

I also deal with acid reflux and burp a lot after meals. It seems like I have a lot of mucus, but I don't know if it's related to my diet or not. What is the sticky CF mucus like?

I do feel kind of sluggish. I've been working my way back into shape after a layoff with my running. At my peak I was running mid 15s for 5k, right now I'm running around 16:30 and struggling with some workouts. Perhaps I am worrying too much, I dunno..Feels like I sweat a lot too, salty sweat, but maybe its from being active.

Would a blood test show signs of CF? Or the colonoscopy? Or is the sweat test the only way to find out? where is the sweat test done and how would I go about it? Thanks for the advice.

runner82 · Aug 25, 2009

Hello there. I'm a healthy 27 year old male, former college athlete and currently work as a US Postal Carrier and still enjoy running, so I am very active. However a few things worry me.

I have stomach issues. My abdomen has been feeling funny and after I eat a meal I wind up passing huge amounts of gas and feeling bloated. Some of my stools are loose and some bulky, however some are normal. I have had an abdominal ultrasound and colonoscopy done which came back normal.

I also deal with acid reflux and burp a lot after meals. It seems like I have a lot of mucus, but I don't know if it's related to my diet or not. What is the sticky CF mucus like?

I do feel kind of sluggish. I've been working my way back into shape after a layoff with my running. At my peak I was running mid 15s for 5k, right now I'm running around 16:30 and struggling with some workouts. Perhaps I am worrying too much, I dunno..Feels like I sweat a lot too, salty sweat, but maybe its from being active.

Would a blood test show signs of CF? Or the colonoscopy? Or is the sweat test the only way to find out? where is the sweat test done and how would I go about it? Thanks for the advice.

runner82 · Aug 25, 2009

Hello there. I'm a healthy 27 year old male, former college athlete and currently work as a US Postal Carrier and still enjoy running, so I am very active. However a few things worry me.

I have stomach issues. My abdomen has been feeling funny and after I eat a meal I wind up passing huge amounts of gas and feeling bloated. Some of my stools are loose and some bulky, however some are normal. I have had an abdominal ultrasound and colonoscopy done which came back normal.

I also deal with acid reflux and burp a lot after meals. It seems like I have a lot of mucus, but I don't know if it's related to my diet or not. What is the sticky CF mucus like?

I do feel kind of sluggish. I've been working my way back into shape after a layoff with my running. At my peak I was running mid 15s for 5k, right now I'm running around 16:30 and struggling with some workouts. Perhaps I am worrying too much, I dunno..Feels like I sweat a lot too, salty sweat, but maybe its from being active.

Would a blood test show signs of CF? Or the colonoscopy? Or is the sweat test the only way to find out? where is the sweat test done and how would I go about it? Thanks for the advice.

runner82 · Aug 25, 2009

Hello there. I'm a healthy 27 year old male, former college athlete and currently work as a US Postal Carrier and still enjoy running, so I am very active. However a few things worry me.
 
 I have stomach issues. My abdomen has been feeling funny and after I eat a meal I wind up passing huge amounts of gas and feeling bloated. Some of my stools are loose and some bulky, however some are normal. I have had an abdominal ultrasound and colonoscopy done which came back normal.
 
 I also deal with acid reflux and burp a lot after meals. It seems like I have a lot of mucus, but I don't know if it's related to my diet or not. What is the sticky CF mucus like?
 
 I do feel kind of sluggish. I've been working my way back into shape after a layoff with my running. At my peak I was running mid 15s for 5k, right now I'm running around 16:30 and struggling with some workouts. Perhaps I am worrying too much, I dunno..Feels like I sweat a lot too, salty sweat, but maybe its from being active.
 
 Would a blood test show signs of CF? Or the colonoscopy? Or is the sweat test the only way to find out? where is the sweat test done and how would I go about it? Thanks for the advice.

hmw · Aug 25, 2009

The sweat test and the blood test looking for the mutations of the gene that cause CF are both important tools used in diagnosing the disease.

A positive sweat test is a very good indicator of having CF and given it's low cost is often the starting point for many doctors. The issue with the sweat test is the problem with false negatives: many people with CF will have borderline results and some will even have negative results. (There are not very many false positives though.) Having the test performed at a CFF-accredited facility is essential to ensure the test is done properly. Go to <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/aboutCFFoundation/Locations/FindACareCenter/">this site- CFF.org</a>, find your state, and you'll be able to find the lab closest to where you live.

Genetic testing via a simple blood test that identifies 2 disease-causing mutations is a clear, no-question-about-it diagnosis. The most comprehensive test out there has, to date, identified more than 1,600 mutations. The issues with genetic testing are: its much higher cost vs. a sweat test and therefore it's difficult to obtain it sometimes; and 2/ a negative result still cannot completely rule out CF in the presence of other symptoms of the disease (esp. a positive sweat test).

I was going to ask you what first gave you the idea that CF was the cause of your symptoms and saw that you first joined the site a few yrs ago. Have any of your issues been investigated in the yrs since you first came and other causes ruled out? (i.e. allergy testing for sinus issues, testing for food allergies/intolerance & elimination diets to see if changes in eating habits help w/ gi symptoms), seeing a GI dr to see if you can treat your reflux (there are a couple types of meds for this) & discuss your gas & stools (there are several GI disorders a good GI dr would be familiar with that would need to be ruled out), etc.

When you mention your mucus, are you coughing it up, blowing it out, spitting it up...? CF mucus comes from a lot of places (sorry to sound gross.) You'd need to tell us where it's coming from first before we could describe it more.

As a well-trained athlete you are very in-tune to your body and can easily sense changes when you slip even a little in your health. Runners need to train constantly to maintain performance so a change in how often you are able to work out will, understandably, cause a change in the status of your health - especially if you have a health condition of any kind compromising you to a degree. Hopefully you'll continue to work back towards where you were before your interruption in your workouts/running and that alone will go a long way in making you feel better. Even though that won't solve what is going on at least you'll feel more like 'yourself' (which sometimes is half the battle in facing worry and anxiety.)

I don't blame you for being worried and can see that what is going on is affecting your QOL. I'd want to be sure to rule out various causes though, especially if anything that had been going on in the past is still continuing now. I hope you get some answers soon, from a dr who will look into any/all causes for what this is.

hmw · Aug 25, 2009

The sweat test and the blood test looking for the mutations of the gene that cause CF are both important tools used in diagnosing the disease.

A positive sweat test is a very good indicator of having CF and given it's low cost is often the starting point for many doctors. The issue with the sweat test is the problem with false negatives: many people with CF will have borderline results and some will even have negative results. (There are not very many false positives though.) Having the test performed at a CFF-accredited facility is essential to ensure the test is done properly. Go to <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/aboutCFFoundation/Locations/FindACareCenter/">this site- CFF.org</a>, find your state, and you'll be able to find the lab closest to where you live.

Genetic testing via a simple blood test that identifies 2 disease-causing mutations is a clear, no-question-about-it diagnosis. The most comprehensive test out there has, to date, identified more than 1,600 mutations. The issues with genetic testing are: its much higher cost vs. a sweat test and therefore it's difficult to obtain it sometimes; and 2/ a negative result still cannot completely rule out CF in the presence of other symptoms of the disease (esp. a positive sweat test).

I was going to ask you what first gave you the idea that CF was the cause of your symptoms and saw that you first joined the site a few yrs ago. Have any of your issues been investigated in the yrs since you first came and other causes ruled out? (i.e. allergy testing for sinus issues, testing for food allergies/intolerance & elimination diets to see if changes in eating habits help w/ gi symptoms), seeing a GI dr to see if you can treat your reflux (there are a couple types of meds for this) & discuss your gas & stools (there are several GI disorders a good GI dr would be familiar with that would need to be ruled out), etc.

When you mention your mucus, are you coughing it up, blowing it out, spitting it up...? CF mucus comes from a lot of places (sorry to sound gross.) You'd need to tell us where it's coming from first before we could describe it more.

As a well-trained athlete you are very in-tune to your body and can easily sense changes when you slip even a little in your health. Runners need to train constantly to maintain performance so a change in how often you are able to work out will, understandably, cause a change in the status of your health - especially if you have a health condition of any kind compromising you to a degree. Hopefully you'll continue to work back towards where you were before your interruption in your workouts/running and that alone will go a long way in making you feel better. Even though that won't solve what is going on at least you'll feel more like 'yourself' (which sometimes is half the battle in facing worry and anxiety.)

I don't blame you for being worried and can see that what is going on is affecting your QOL. I'd want to be sure to rule out various causes though, especially if anything that had been going on in the past is still continuing now. I hope you get some answers soon, from a dr who will look into any/all causes for what this is.

hmw · Aug 25, 2009

The sweat test and the blood test looking for the mutations of the gene that cause CF are both important tools used in diagnosing the disease.

A positive sweat test is a very good indicator of having CF and given it's low cost is often the starting point for many doctors. The issue with the sweat test is the problem with false negatives: many people with CF will have borderline results and some will even have negative results. (There are not very many false positives though.) Having the test performed at a CFF-accredited facility is essential to ensure the test is done properly. Go to <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/aboutCFFoundation/Locations/FindACareCenter/">this site- CFF.org</a>, find your state, and you'll be able to find the lab closest to where you live.

Genetic testing via a simple blood test that identifies 2 disease-causing mutations is a clear, no-question-about-it diagnosis. The most comprehensive test out there has, to date, identified more than 1,600 mutations. The issues with genetic testing are: its much higher cost vs. a sweat test and therefore it's difficult to obtain it sometimes; and 2/ a negative result still cannot completely rule out CF in the presence of other symptoms of the disease (esp. a positive sweat test).

I was going to ask you what first gave you the idea that CF was the cause of your symptoms and saw that you first joined the site a few yrs ago. Have any of your issues been investigated in the yrs since you first came and other causes ruled out? (i.e. allergy testing for sinus issues, testing for food allergies/intolerance & elimination diets to see if changes in eating habits help w/ gi symptoms), seeing a GI dr to see if you can treat your reflux (there are a couple types of meds for this) & discuss your gas & stools (there are several GI disorders a good GI dr would be familiar with that would need to be ruled out), etc.

When you mention your mucus, are you coughing it up, blowing it out, spitting it up...? CF mucus comes from a lot of places (sorry to sound gross.) You'd need to tell us where it's coming from first before we could describe it more.

As a well-trained athlete you are very in-tune to your body and can easily sense changes when you slip even a little in your health. Runners need to train constantly to maintain performance so a change in how often you are able to work out will, understandably, cause a change in the status of your health - especially if you have a health condition of any kind compromising you to a degree. Hopefully you'll continue to work back towards where you were before your interruption in your workouts/running and that alone will go a long way in making you feel better. Even though that won't solve what is going on at least you'll feel more like 'yourself' (which sometimes is half the battle in facing worry and anxiety.)

I don't blame you for being worried and can see that what is going on is affecting your QOL. I'd want to be sure to rule out various causes though, especially if anything that had been going on in the past is still continuing now. I hope you get some answers soon, from a dr who will look into any/all causes for what this is.

hmw · Aug 25, 2009

The sweat test and the blood test looking for the mutations of the gene that cause CF are both important tools used in diagnosing the disease.

A positive sweat test is a very good indicator of having CF and given it's low cost is often the starting point for many doctors. The issue with the sweat test is the problem with false negatives: many people with CF will have borderline results and some will even have negative results. (There are not very many false positives though.) Having the test performed at a CFF-accredited facility is essential to ensure the test is done properly. Go to <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/aboutCFFoundation/Locations/FindACareCenter/">this site- CFF.org</a>, find your state, and you'll be able to find the lab closest to where you live.

Genetic testing via a simple blood test that identifies 2 disease-causing mutations is a clear, no-question-about-it diagnosis. The most comprehensive test out there has, to date, identified more than 1,600 mutations. The issues with genetic testing are: its much higher cost vs. a sweat test and therefore it's difficult to obtain it sometimes; and 2/ a negative result still cannot completely rule out CF in the presence of other symptoms of the disease (esp. a positive sweat test).

I was going to ask you what first gave you the idea that CF was the cause of your symptoms and saw that you first joined the site a few yrs ago. Have any of your issues been investigated in the yrs since you first came and other causes ruled out? (i.e. allergy testing for sinus issues, testing for food allergies/intolerance & elimination diets to see if changes in eating habits help w/ gi symptoms), seeing a GI dr to see if you can treat your reflux (there are a couple types of meds for this) & discuss your gas & stools (there are several GI disorders a good GI dr would be familiar with that would need to be ruled out), etc.

When you mention your mucus, are you coughing it up, blowing it out, spitting it up...? CF mucus comes from a lot of places (sorry to sound gross.) You'd need to tell us where it's coming from first before we could describe it more.

As a well-trained athlete you are very in-tune to your body and can easily sense changes when you slip even a little in your health. Runners need to train constantly to maintain performance so a change in how often you are able to work out will, understandably, cause a change in the status of your health - especially if you have a health condition of any kind compromising you to a degree. Hopefully you'll continue to work back towards where you were before your interruption in your workouts/running and that alone will go a long way in making you feel better. Even though that won't solve what is going on at least you'll feel more like 'yourself' (which sometimes is half the battle in facing worry and anxiety.)

I don't blame you for being worried and can see that what is going on is affecting your QOL. I'd want to be sure to rule out various causes though, especially if anything that had been going on in the past is still continuing now. I hope you get some answers soon, from a dr who will look into any/all causes for what this is.

hmw · Aug 25, 2009

The sweat test and the blood test looking for the mutations of the gene that cause CF are both important tools used in diagnosing the disease.
 
 A positive sweat test is a very good indicator of having CF and given it's low cost is often the starting point for many doctors. The issue with the sweat test is the problem with false negatives: many people with CF will have borderline results and some will even have negative results. (There are not very many false positives though.) Having the test performed at a CFF-accredited facility is essential to ensure the test is done properly. Go to <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/aboutCFFoundation/Locations/FindACareCenter/">this site- CFF.org</a>, find your state, and you'll be able to find the lab closest to where you live.
 
 Genetic testing via a simple blood test that identifies 2 disease-causing mutations is a clear, no-question-about-it diagnosis. The most comprehensive test out there has, to date, identified more than 1,600 mutations. The issues with genetic testing are: its much higher cost vs. a sweat test and therefore it's difficult to obtain it sometimes; and 2/ a negative result still cannot completely rule out CF in the presence of other symptoms of the disease (esp. a positive sweat test).
 
 I was going to ask you what first gave you the idea that CF was the cause of your symptoms and saw that you first joined the site a few yrs ago. Have any of your issues been investigated in the yrs since you first came and other causes ruled out? (i.e. allergy testing for sinus issues, testing for food allergies/intolerance & elimination diets to see if changes in eating habits help w/ gi symptoms), seeing a GI dr to see if you can treat your reflux (there are a couple types of meds for this) & discuss your gas & stools (there are several GI disorders a good GI dr would be familiar with that would need to be ruled out), etc.
 
 When you mention your mucus, are you coughing it up, blowing it out, spitting it up...? CF mucus comes from a lot of places (sorry to sound gross.) You'd need to tell us where it's coming from first before we could describe it more.
 
 As a well-trained athlete you are very in-tune to your body and can easily sense changes when you slip even a little in your health. Runners need to train constantly to maintain performance so a change in how often you are able to work out will, understandably, cause a change in the status of your health - especially if you have a health condition of any kind compromising you to a degree. Hopefully you'll continue to work back towards where you were before your interruption in your workouts/running and that alone will go a long way in making you feel better. Even though that won't solve what is going on at least you'll feel more like 'yourself' (which sometimes is half the battle in facing worry and anxiety.)
 
 I don't blame you for being worried and can see that what is going on is affecting your QOL. I'd want to be sure to rule out various causes though, especially if anything that had been going on in the past is still continuing now. I hope you get some answers soon, from a dr who will look into any/all causes for what this is.

runner82 · Aug 25, 2009

Thanks for the response. I'm actually up at this hour, kinda anxious about this whole issue. I guess I am kind of a hypochondriac, as I did join several years ago as I was just googling around random symptoms I had and CF was one of them. The stomach stuff was annoying me bad which is why I went in and had the colonoscopy which showed everything as normal. Would CF show up on that? Or would any abnormalities show up on my blood tests I had?

The mucus I have, I am spitting up throughout the day. I haven't really had any issues with coughing. The only time really is after I eat, although who knows. That could be something totally different.

When I run, I am constantly spitting, and some of the stuff is thick and nasty, yet clear or white in color. I'll spit it out and because of the thickness it winds up running down my face, haha, sorry to be so gross there.

runner82 · Aug 25, 2009

Thanks for the response. I'm actually up at this hour, kinda anxious about this whole issue. I guess I am kind of a hypochondriac, as I did join several years ago as I was just googling around random symptoms I had and CF was one of them. The stomach stuff was annoying me bad which is why I went in and had the colonoscopy which showed everything as normal. Would CF show up on that? Or would any abnormalities show up on my blood tests I had?

The mucus I have, I am spitting up throughout the day. I haven't really had any issues with coughing. The only time really is after I eat, although who knows. That could be something totally different.

When I run, I am constantly spitting, and some of the stuff is thick and nasty, yet clear or white in color. I'll spit it out and because of the thickness it winds up running down my face, haha, sorry to be so gross there.

runner82 · Aug 25, 2009

Thanks for the response. I'm actually up at this hour, kinda anxious about this whole issue. I guess I am kind of a hypochondriac, as I did join several years ago as I was just googling around random symptoms I had and CF was one of them. The stomach stuff was annoying me bad which is why I went in and had the colonoscopy which showed everything as normal. Would CF show up on that? Or would any abnormalities show up on my blood tests I had?

The mucus I have, I am spitting up throughout the day. I haven't really had any issues with coughing. The only time really is after I eat, although who knows. That could be something totally different.

When I run, I am constantly spitting, and some of the stuff is thick and nasty, yet clear or white in color. I'll spit it out and because of the thickness it winds up running down my face, haha, sorry to be so gross there.

runner82 · Aug 25, 2009

Thanks for the response. I'm actually up at this hour, kinda anxious about this whole issue. I guess I am kind of a hypochondriac, as I did join several years ago as I was just googling around random symptoms I had and CF was one of them. The stomach stuff was annoying me bad which is why I went in and had the colonoscopy which showed everything as normal. Would CF show up on that? Or would any abnormalities show up on my blood tests I had?

The mucus I have, I am spitting up throughout the day. I haven't really had any issues with coughing. The only time really is after I eat, although who knows. That could be something totally different.

When I run, I am constantly spitting, and some of the stuff is thick and nasty, yet clear or white in color. I'll spit it out and because of the thickness it winds up running down my face, haha, sorry to be so gross there.

runner82 · Aug 25, 2009

Thanks for the response. I'm actually up at this hour, kinda anxious about this whole issue. I guess I am kind of a hypochondriac, as I did join several years ago as I was just googling around random symptoms I had and CF was one of them. The stomach stuff was annoying me bad which is why I went in and had the colonoscopy which showed everything as normal. Would CF show up on that? Or would any abnormalities show up on my blood tests I had?
 
 The mucus I have, I am spitting up throughout the day. I haven't really had any issues with coughing. The only time really is after I eat, although who knows. That could be something totally different.
 
 When I run, I am constantly spitting, and some of the stuff is thick and nasty, yet clear or white in color. I'll spit it out and because of the thickness it winds up running down my face, haha, sorry to be so gross there.

dlo2977 · Aug 26, 2009