Sweat Test Result???

M

MaryAlice

New member
Hi I wonder if anyone can help. We are waiting the results back of a sweat test on our 10month old baby girl.
She had a slow start and didn't put on loads of weight in her first few months but other than that totally normal.
She has never had any chest problems, cough, smelly nappeis etc.
The doc thought it was a good idea to rule out CF but couldnt get enough sweat first time round so decided to see how she got on.
She is now doing great, putting on above average weight, no chest problems (has had a couple of colds but got over them in a week or so) and she has no poo problems etc
The doc has decided to try the sweat test again, just to finish of what he started.
They got enough sweat this time, lots was left on her arm which we licked when the tech turned his back!!!
It didnt taste at all salty, maybe the slightest tinge but less than an adults if that makes sence.
We have licked her sweat at other times and it doesn't taste salty.
The only bit which has any taste of salt is her soft spot as she doesn't have much hair yet! and that isn't what you would say was salty.
Does anybody know if the test can come back positive but the sweat from that test not taste salty?
Also as she is now nearly a year old and thriving in everyway is it possible she may have it?
Can you have CF and not know, people say you can but don't you have some small symptoms like a bit of a cough all the time or not putting on weight easily?
I don't think she has got it but just the fact the test has been done makes me nervious. Are the sweat test accurate?
Can other conditions cause possitive sweat tests and can some people just be more salty than others?
It doesn't seem a very scientific test for something so serious.
Oh yes and there is no family history on either side and we both have huge families.
 
M

MaryAlice

New member
Hi I wonder if anyone can help. We are waiting the results back of a sweat test on our 10month old baby girl.
She had a slow start and didn't put on loads of weight in her first few months but other than that totally normal.
She has never had any chest problems, cough, smelly nappeis etc.
The doc thought it was a good idea to rule out CF but couldnt get enough sweat first time round so decided to see how she got on.
She is now doing great, putting on above average weight, no chest problems (has had a couple of colds but got over them in a week or so) and she has no poo problems etc
The doc has decided to try the sweat test again, just to finish of what he started.
They got enough sweat this time, lots was left on her arm which we licked when the tech turned his back!!!
It didnt taste at all salty, maybe the slightest tinge but less than an adults if that makes sence.
We have licked her sweat at other times and it doesn't taste salty.
The only bit which has any taste of salt is her soft spot as she doesn't have much hair yet! and that isn't what you would say was salty.
Does anybody know if the test can come back positive but the sweat from that test not taste salty?
Also as she is now nearly a year old and thriving in everyway is it possible she may have it?
Can you have CF and not know, people say you can but don't you have some small symptoms like a bit of a cough all the time or not putting on weight easily?
I don't think she has got it but just the fact the test has been done makes me nervious. Are the sweat test accurate?
Can other conditions cause possitive sweat tests and can some people just be more salty than others?
It doesn't seem a very scientific test for something so serious.
Oh yes and there is no family history on either side and we both have huge families.
 
M

MaryAlice

New member
Hi I wonder if anyone can help. We are waiting the results back of a sweat test on our 10month old baby girl.
She had a slow start and didn't put on loads of weight in her first few months but other than that totally normal.
She has never had any chest problems, cough, smelly nappeis etc.
The doc thought it was a good idea to rule out CF but couldnt get enough sweat first time round so decided to see how she got on.
She is now doing great, putting on above average weight, no chest problems (has had a couple of colds but got over them in a week or so) and she has no poo problems etc
The doc has decided to try the sweat test again, just to finish of what he started.
They got enough sweat this time, lots was left on her arm which we licked when the tech turned his back!!!
It didnt taste at all salty, maybe the slightest tinge but less than an adults if that makes sence.
We have licked her sweat at other times and it doesn't taste salty.
The only bit which has any taste of salt is her soft spot as she doesn't have much hair yet! and that isn't what you would say was salty.
Does anybody know if the test can come back positive but the sweat from that test not taste salty?
Also as she is now nearly a year old and thriving in everyway is it possible she may have it?
Can you have CF and not know, people say you can but don't you have some small symptoms like a bit of a cough all the time or not putting on weight easily?
I don't think she has got it but just the fact the test has been done makes me nervious. Are the sweat test accurate?
Can other conditions cause possitive sweat tests and can some people just be more salty than others?
It doesn't seem a very scientific test for something so serious.
Oh yes and there is no family history on either side and we both have huge families.
 
M

MaryAlice

New member
Hi I wonder if anyone can help. We are waiting the results back of a sweat test on our 10month old baby girl.
She had a slow start and didn't put on loads of weight in her first few months but other than that totally normal.
She has never had any chest problems, cough, smelly nappeis etc.
The doc thought it was a good idea to rule out CF but couldnt get enough sweat first time round so decided to see how she got on.
She is now doing great, putting on above average weight, no chest problems (has had a couple of colds but got over them in a week or so) and she has no poo problems etc
The doc has decided to try the sweat test again, just to finish of what he started.
They got enough sweat this time, lots was left on her arm which we licked when the tech turned his back!!!
It didnt taste at all salty, maybe the slightest tinge but less than an adults if that makes sence.
We have licked her sweat at other times and it doesn't taste salty.
The only bit which has any taste of salt is her soft spot as she doesn't have much hair yet! and that isn't what you would say was salty.
Does anybody know if the test can come back positive but the sweat from that test not taste salty?
Also as she is now nearly a year old and thriving in everyway is it possible she may have it?
Can you have CF and not know, people say you can but don't you have some small symptoms like a bit of a cough all the time or not putting on weight easily?
I don't think she has got it but just the fact the test has been done makes me nervious. Are the sweat test accurate?
Can other conditions cause possitive sweat tests and can some people just be more salty than others?
It doesn't seem a very scientific test for something so serious.
Oh yes and there is no family history on either side and we both have huge families.
 
M

MaryAlice

New member
Hi I wonder if anyone can help. We are waiting the results back of a sweat test on our 10month old baby girl.
She had a slow start and didn't put on loads of weight in her first few months but other than that totally normal.
She has never had any chest problems, cough, smelly nappeis etc.
The doc thought it was a good idea to rule out CF but couldnt get enough sweat first time round so decided to see how she got on.
She is now doing great, putting on above average weight, no chest problems (has had a couple of colds but got over them in a week or so) and she has no poo problems etc
The doc has decided to try the sweat test again, just to finish of what he started.
They got enough sweat this time, lots was left on her arm which we licked when the tech turned his back!!!
It didnt taste at all salty, maybe the slightest tinge but less than an adults if that makes sence.
We have licked her sweat at other times and it doesn't taste salty.
The only bit which has any taste of salt is her soft spot as she doesn't have much hair yet! and that isn't what you would say was salty.
Does anybody know if the test can come back positive but the sweat from that test not taste salty?
Also as she is now nearly a year old and thriving in everyway is it possible she may have it?
Can you have CF and not know, people say you can but don't you have some small symptoms like a bit of a cough all the time or not putting on weight easily?
I don't think she has got it but just the fact the test has been done makes me nervious. Are the sweat test accurate?
Can other conditions cause possitive sweat tests and can some people just be more salty than others?
It doesn't seem a very scientific test for something so serious.
Oh yes and there is no family history on either side and we both have huge families.
 
J

JustDucky

New member
First of all, welcome to the site! I think that it is great that you have a doc that is so thorough but I also know how much this test is weighing on your mind. As far as having a positive sweat test with not so salty skin I would think that it is possible especially if it isn't a really high value like 62 versus something like 105. But, I really don't know that answer for sure, I am speculating there. My skin is saltier than usual (not quite like a french fry with salt) but my levels are actually in the 50's, in the borderline range.

As far as thriving and having CF, yeah it is possible. There is a small percentage of CF'ers who are what is called pancreatic sufficient meaning that their pancreas is able to secrete the enzymes necessary to digest fats, carbs and proteins into their intenstines. Others take enzymes to digest their food.

Regarding the question of having CF and not knowing it, I am a good example. I wasn't even considered as a CF diagnosis until I was 33. As a kid, I wasn't really ill..colds did last longer and I coughed with exercise but I was a healthy weight. It wasn't until I got older when things came to full circle with me. So I would say that it is possible to elude a CF diagnosis until later in life when more symptoms come about.

The most accurate test would be a full genetics panel that tests for 1500+ mutations, but sweat testing can give the docs an idea what is going on. However, there are people out there with CF that have normal or borderline values...I know of a few people on this board that do indeed have low sweat chloride test levels.

Conditions that can cause an elevated sweat test are untreated Addison's disease (endocrine disorder), untreated hypothyroidism, types of muscle disorders called mitochondrial myopathies and glycogen storage diseases. I think that there are a few more disorders that can cause false highs but I can't remember them right now.

As far as no CF history on either side of the family, it can still happen. Remember, a person needs two mutations one from each parent to develop CF. It is possible to have carriers on each side for generations and then finally someone gets CF. If both parents are carriers then there is a 1 in 4 chance that CF will occur, a 1 in 4 chance that the baby isn't a carrier and a 1 in 2 chance that the baby will be a carrier only.

I hope that I have helped you and not confused you...there is just so much info out there regarding CF, alot to absorb. I hope all goes well with the testing.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JustDucky

New member
First of all, welcome to the site! I think that it is great that you have a doc that is so thorough but I also know how much this test is weighing on your mind. As far as having a positive sweat test with not so salty skin I would think that it is possible especially if it isn't a really high value like 62 versus something like 105. But, I really don't know that answer for sure, I am speculating there. My skin is saltier than usual (not quite like a french fry with salt) but my levels are actually in the 50's, in the borderline range.

As far as thriving and having CF, yeah it is possible. There is a small percentage of CF'ers who are what is called pancreatic sufficient meaning that their pancreas is able to secrete the enzymes necessary to digest fats, carbs and proteins into their intenstines. Others take enzymes to digest their food.

Regarding the question of having CF and not knowing it, I am a good example. I wasn't even considered as a CF diagnosis until I was 33. As a kid, I wasn't really ill..colds did last longer and I coughed with exercise but I was a healthy weight. It wasn't until I got older when things came to full circle with me. So I would say that it is possible to elude a CF diagnosis until later in life when more symptoms come about.

The most accurate test would be a full genetics panel that tests for 1500+ mutations, but sweat testing can give the docs an idea what is going on. However, there are people out there with CF that have normal or borderline values...I know of a few people on this board that do indeed have low sweat chloride test levels.

Conditions that can cause an elevated sweat test are untreated Addison's disease (endocrine disorder), untreated hypothyroidism, types of muscle disorders called mitochondrial myopathies and glycogen storage diseases. I think that there are a few more disorders that can cause false highs but I can't remember them right now.

As far as no CF history on either side of the family, it can still happen. Remember, a person needs two mutations one from each parent to develop CF. It is possible to have carriers on each side for generations and then finally someone gets CF. If both parents are carriers then there is a 1 in 4 chance that CF will occur, a 1 in 4 chance that the baby isn't a carrier and a 1 in 2 chance that the baby will be a carrier only.

I hope that I have helped you and not confused you...there is just so much info out there regarding CF, alot to absorb. I hope all goes well with the testing.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JustDucky

New member
First of all, welcome to the site! I think that it is great that you have a doc that is so thorough but I also know how much this test is weighing on your mind. As far as having a positive sweat test with not so salty skin I would think that it is possible especially if it isn't a really high value like 62 versus something like 105. But, I really don't know that answer for sure, I am speculating there. My skin is saltier than usual (not quite like a french fry with salt) but my levels are actually in the 50's, in the borderline range.

As far as thriving and having CF, yeah it is possible. There is a small percentage of CF'ers who are what is called pancreatic sufficient meaning that their pancreas is able to secrete the enzymes necessary to digest fats, carbs and proteins into their intenstines. Others take enzymes to digest their food.

Regarding the question of having CF and not knowing it, I am a good example. I wasn't even considered as a CF diagnosis until I was 33. As a kid, I wasn't really ill..colds did last longer and I coughed with exercise but I was a healthy weight. It wasn't until I got older when things came to full circle with me. So I would say that it is possible to elude a CF diagnosis until later in life when more symptoms come about.

The most accurate test would be a full genetics panel that tests for 1500+ mutations, but sweat testing can give the docs an idea what is going on. However, there are people out there with CF that have normal or borderline values...I know of a few people on this board that do indeed have low sweat chloride test levels.

Conditions that can cause an elevated sweat test are untreated Addison's disease (endocrine disorder), untreated hypothyroidism, types of muscle disorders called mitochondrial myopathies and glycogen storage diseases. I think that there are a few more disorders that can cause false highs but I can't remember them right now.

As far as no CF history on either side of the family, it can still happen. Remember, a person needs two mutations one from each parent to develop CF. It is possible to have carriers on each side for generations and then finally someone gets CF. If both parents are carriers then there is a 1 in 4 chance that CF will occur, a 1 in 4 chance that the baby isn't a carrier and a 1 in 2 chance that the baby will be a carrier only.

I hope that I have helped you and not confused you...there is just so much info out there regarding CF, alot to absorb. I hope all goes well with the testing.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JustDucky

New member
First of all, welcome to the site! I think that it is great that you have a doc that is so thorough but I also know how much this test is weighing on your mind. As far as having a positive sweat test with not so salty skin I would think that it is possible especially if it isn't a really high value like 62 versus something like 105. But, I really don't know that answer for sure, I am speculating there. My skin is saltier than usual (not quite like a french fry with salt) but my levels are actually in the 50's, in the borderline range.

As far as thriving and having CF, yeah it is possible. There is a small percentage of CF'ers who are what is called pancreatic sufficient meaning that their pancreas is able to secrete the enzymes necessary to digest fats, carbs and proteins into their intenstines. Others take enzymes to digest their food.

Regarding the question of having CF and not knowing it, I am a good example. I wasn't even considered as a CF diagnosis until I was 33. As a kid, I wasn't really ill..colds did last longer and I coughed with exercise but I was a healthy weight. It wasn't until I got older when things came to full circle with me. So I would say that it is possible to elude a CF diagnosis until later in life when more symptoms come about.

The most accurate test would be a full genetics panel that tests for 1500+ mutations, but sweat testing can give the docs an idea what is going on. However, there are people out there with CF that have normal or borderline values...I know of a few people on this board that do indeed have low sweat chloride test levels.

Conditions that can cause an elevated sweat test are untreated Addison's disease (endocrine disorder), untreated hypothyroidism, types of muscle disorders called mitochondrial myopathies and glycogen storage diseases. I think that there are a few more disorders that can cause false highs but I can't remember them right now.

As far as no CF history on either side of the family, it can still happen. Remember, a person needs two mutations one from each parent to develop CF. It is possible to have carriers on each side for generations and then finally someone gets CF. If both parents are carriers then there is a 1 in 4 chance that CF will occur, a 1 in 4 chance that the baby isn't a carrier and a 1 in 2 chance that the baby will be a carrier only.

I hope that I have helped you and not confused you...there is just so much info out there regarding CF, alot to absorb. I hope all goes well with the testing.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JustDucky

New member
First of all, welcome to the site! I think that it is great that you have a doc that is so thorough but I also know how much this test is weighing on your mind. As far as having a positive sweat test with not so salty skin I would think that it is possible especially if it isn't a really high value like 62 versus something like 105. But, I really don't know that answer for sure, I am speculating there. My skin is saltier than usual (not quite like a french fry with salt) but my levels are actually in the 50's, in the borderline range.

As far as thriving and having CF, yeah it is possible. There is a small percentage of CF'ers who are what is called pancreatic sufficient meaning that their pancreas is able to secrete the enzymes necessary to digest fats, carbs and proteins into their intenstines. Others take enzymes to digest their food.

Regarding the question of having CF and not knowing it, I am a good example. I wasn't even considered as a CF diagnosis until I was 33. As a kid, I wasn't really ill..colds did last longer and I coughed with exercise but I was a healthy weight. It wasn't until I got older when things came to full circle with me. So I would say that it is possible to elude a CF diagnosis until later in life when more symptoms come about.

The most accurate test would be a full genetics panel that tests for 1500+ mutations, but sweat testing can give the docs an idea what is going on. However, there are people out there with CF that have normal or borderline values...I know of a few people on this board that do indeed have low sweat chloride test levels.

Conditions that can cause an elevated sweat test are untreated Addison's disease (endocrine disorder), untreated hypothyroidism, types of muscle disorders called mitochondrial myopathies and glycogen storage diseases. I think that there are a few more disorders that can cause false highs but I can't remember them right now.

As far as no CF history on either side of the family, it can still happen. Remember, a person needs two mutations one from each parent to develop CF. It is possible to have carriers on each side for generations and then finally someone gets CF. If both parents are carriers then there is a 1 in 4 chance that CF will occur, a 1 in 4 chance that the baby isn't a carrier and a 1 in 2 chance that the baby will be a carrier only.

I hope that I have helped you and not confused you...there is just so much info out there regarding CF, alot to absorb. I hope all goes well with the testing.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

Alyssa

New member
I don't know that I can say much different that Jenn - but just wanted to say too, that you are lucky your doctor is being thorough and

1) no you won't always taste salty skin - yes the saltiness taste does go up with the sweat test number but a lot of people test out in the normal/borderline range or even under the normal range (don't taste salty or test positive) and still have confirmed genetic testing showing CF. You are absolutely correct, it is not a very good test for such a serious question and to make matters worse, many people still don't know for sure if they get a high normal or borderline number -- FULL GENETIC TESTING is really the way to go - and by that I mean testing for ALL 1541 cf genes -- there are many tests out there that look for far fewer number of genes - it is a waste of time unless you test for them all.

2) The only exception to my rule of thumb about pursuing genetic testing would be if you have no CF symptoms and the sweat test (done at an accredited center) was in the single digits -- like 7 8 or 9 .... those are clear cut negative numbers... when you start getting up into the 20's and 30's you have to do full testing to find out for sure.

3) I'd say relax for now - it will probably be negative - but do be sure to ask what the number was, I was told for years my daughter was "negative" -- come to find out she was 38 (normal is anything under 40) She was incorrectly diagnosed because of that. Don't just take their word for it that the results are "normal" ask what the number was and pursue more testing if it's over 20.

4) approximately 20% of people with CF are pancreatic sufficient - so their digestion is perfectly normal.

5) read my blog for more info on sweat test number, our experience with testing - and note that my son did not start showing any real treatable symptoms of CF until he turned 21 years old.

Best of luck, and be sure to let us know what happens.
 
A

Alyssa

New member
I don't know that I can say much different that Jenn - but just wanted to say too, that you are lucky your doctor is being thorough and

1) no you won't always taste salty skin - yes the saltiness taste does go up with the sweat test number but a lot of people test out in the normal/borderline range or even under the normal range (don't taste salty or test positive) and still have confirmed genetic testing showing CF. You are absolutely correct, it is not a very good test for such a serious question and to make matters worse, many people still don't know for sure if they get a high normal or borderline number -- FULL GENETIC TESTING is really the way to go - and by that I mean testing for ALL 1541 cf genes -- there are many tests out there that look for far fewer number of genes - it is a waste of time unless you test for them all.

2) The only exception to my rule of thumb about pursuing genetic testing would be if you have no CF symptoms and the sweat test (done at an accredited center) was in the single digits -- like 7 8 or 9 .... those are clear cut negative numbers... when you start getting up into the 20's and 30's you have to do full testing to find out for sure.

3) I'd say relax for now - it will probably be negative - but do be sure to ask what the number was, I was told for years my daughter was "negative" -- come to find out she was 38 (normal is anything under 40) She was incorrectly diagnosed because of that. Don't just take their word for it that the results are "normal" ask what the number was and pursue more testing if it's over 20.

4) approximately 20% of people with CF are pancreatic sufficient - so their digestion is perfectly normal.

5) read my blog for more info on sweat test number, our experience with testing - and note that my son did not start showing any real treatable symptoms of CF until he turned 21 years old.

Best of luck, and be sure to let us know what happens.
 
A

Alyssa

New member
I don't know that I can say much different that Jenn - but just wanted to say too, that you are lucky your doctor is being thorough and

1) no you won't always taste salty skin - yes the saltiness taste does go up with the sweat test number but a lot of people test out in the normal/borderline range or even under the normal range (don't taste salty or test positive) and still have confirmed genetic testing showing CF. You are absolutely correct, it is not a very good test for such a serious question and to make matters worse, many people still don't know for sure if they get a high normal or borderline number -- FULL GENETIC TESTING is really the way to go - and by that I mean testing for ALL 1541 cf genes -- there are many tests out there that look for far fewer number of genes - it is a waste of time unless you test for them all.

2) The only exception to my rule of thumb about pursuing genetic testing would be if you have no CF symptoms and the sweat test (done at an accredited center) was in the single digits -- like 7 8 or 9 .... those are clear cut negative numbers... when you start getting up into the 20's and 30's you have to do full testing to find out for sure.

3) I'd say relax for now - it will probably be negative - but do be sure to ask what the number was, I was told for years my daughter was "negative" -- come to find out she was 38 (normal is anything under 40) She was incorrectly diagnosed because of that. Don't just take their word for it that the results are "normal" ask what the number was and pursue more testing if it's over 20.

4) approximately 20% of people with CF are pancreatic sufficient - so their digestion is perfectly normal.

5) read my blog for more info on sweat test number, our experience with testing - and note that my son did not start showing any real treatable symptoms of CF until he turned 21 years old.

Best of luck, and be sure to let us know what happens.
 
A

Alyssa

New member
I don't know that I can say much different that Jenn - but just wanted to say too, that you are lucky your doctor is being thorough and

1) no you won't always taste salty skin - yes the saltiness taste does go up with the sweat test number but a lot of people test out in the normal/borderline range or even under the normal range (don't taste salty or test positive) and still have confirmed genetic testing showing CF. You are absolutely correct, it is not a very good test for such a serious question and to make matters worse, many people still don't know for sure if they get a high normal or borderline number -- FULL GENETIC TESTING is really the way to go - and by that I mean testing for ALL 1541 cf genes -- there are many tests out there that look for far fewer number of genes - it is a waste of time unless you test for them all.

2) The only exception to my rule of thumb about pursuing genetic testing would be if you have no CF symptoms and the sweat test (done at an accredited center) was in the single digits -- like 7 8 or 9 .... those are clear cut negative numbers... when you start getting up into the 20's and 30's you have to do full testing to find out for sure.

3) I'd say relax for now - it will probably be negative - but do be sure to ask what the number was, I was told for years my daughter was "negative" -- come to find out she was 38 (normal is anything under 40) She was incorrectly diagnosed because of that. Don't just take their word for it that the results are "normal" ask what the number was and pursue more testing if it's over 20.

4) approximately 20% of people with CF are pancreatic sufficient - so their digestion is perfectly normal.

5) read my blog for more info on sweat test number, our experience with testing - and note that my son did not start showing any real treatable symptoms of CF until he turned 21 years old.

Best of luck, and be sure to let us know what happens.
 
A

Alyssa

New member
I don't know that I can say much different that Jenn - but just wanted to say too, that you are lucky your doctor is being thorough and

1) no you won't always taste salty skin - yes the saltiness taste does go up with the sweat test number but a lot of people test out in the normal/borderline range or even under the normal range (don't taste salty or test positive) and still have confirmed genetic testing showing CF. You are absolutely correct, it is not a very good test for such a serious question and to make matters worse, many people still don't know for sure if they get a high normal or borderline number -- FULL GENETIC TESTING is really the way to go - and by that I mean testing for ALL 1541 cf genes -- there are many tests out there that look for far fewer number of genes - it is a waste of time unless you test for them all.

2) The only exception to my rule of thumb about pursuing genetic testing would be if you have no CF symptoms and the sweat test (done at an accredited center) was in the single digits -- like 7 8 or 9 .... those are clear cut negative numbers... when you start getting up into the 20's and 30's you have to do full testing to find out for sure.

3) I'd say relax for now - it will probably be negative - but do be sure to ask what the number was, I was told for years my daughter was "negative" -- come to find out she was 38 (normal is anything under 40) She was incorrectly diagnosed because of that. Don't just take their word for it that the results are "normal" ask what the number was and pursue more testing if it's over 20.

4) approximately 20% of people with CF are pancreatic sufficient - so their digestion is perfectly normal.

5) read my blog for more info on sweat test number, our experience with testing - and note that my son did not start showing any real treatable symptoms of CF until he turned 21 years old.

Best of luck, and be sure to let us know what happens.
 
You must log in or register to reply here.
Top