Is this test result REALLY a negative?

mom4holly

New member
I agree with asking Steve from Ambry, he helped me.

As far as the low sweat test-my daughter got numbers in the teens on her first sweat test & we proceeded with the full panel with deletion from Ambry & got 2 genes back. My daughter also has no digestional issues I will add to that though.

I agree with the hx of Celiacs, it might not be CF but you want to clear that possibility out to make sure that your son is getting the right treatment.

Good luck, I hope that they can figure out what is wrong with your little one soon.
 

mom4holly

New member
I agree with asking Steve from Ambry, he helped me.

As far as the low sweat test-my daughter got numbers in the teens on her first sweat test & we proceeded with the full panel with deletion from Ambry & got 2 genes back. My daughter also has no digestional issues I will add to that though.

I agree with the hx of Celiacs, it might not be CF but you want to clear that possibility out to make sure that your son is getting the right treatment.

Good luck, I hope that they can figure out what is wrong with your little one soon.
 

mom4holly

New member
I agree with asking Steve from Ambry, he helped me.

As far as the low sweat test-my daughter got numbers in the teens on her first sweat test & we proceeded with the full panel with deletion from Ambry & got 2 genes back. My daughter also has no digestional issues I will add to that though.

I agree with the hx of Celiacs, it might not be CF but you want to clear that possibility out to make sure that your son is getting the right treatment.

Good luck, I hope that they can figure out what is wrong with your little one soon.
 

mom4holly

New member
I agree with asking Steve from Ambry, he helped me.

As far as the low sweat test-my daughter got numbers in the teens on her first sweat test & we proceeded with the full panel with deletion from Ambry & got 2 genes back. My daughter also has no digestional issues I will add to that though.

I agree with the hx of Celiacs, it might not be CF but you want to clear that possibility out to make sure that your son is getting the right treatment.

Good luck, I hope that they can figure out what is wrong with your little one soon.
 

mom4holly

New member
I agree with asking Steve from Ambry, he helped me.

As far as the low sweat test-my daughter got numbers in the teens on her first sweat test & we proceeded with the full panel with deletion from Ambry & got 2 genes back. My daughter also has no digestional issues I will add to that though.

I agree with the hx of Celiacs, it might not be CF but you want to clear that possibility out to make sure that your son is getting the right treatment.

Good luck, I hope that they can figure out what is wrong with your little one soon.
 

fsuapril

New member
as we have learned through our process of elimination he could have a condition called Eosinophilic (white blood cells) Gastro, or esophogitis... it is an internal allergy in the digestive tract... he could have this and not test positive for allergies, but it is an allergy to foods that only effects the digestive tracts. Unfortunatly the main way to test for this is to do an endoscopy and sigmoidoscopy. and they take biopsies... they can also do a celiac biopsy. The symptoms for hte above are similar to that of celiac.

good luck! we had 9 and 11 on our sweat test but the Dr. isnt convinced that the test was done correctly...my son was screaming and throwing himslef around the whole time he had the electrodes and disks on....he was DONE being poked proded aNd messed with! so since he has confirmed pancreatic insufficiency (which is something they can test your child for with a stool test) our Dr isnt convinced of the sweat test...
 

fsuapril

New member
as we have learned through our process of elimination he could have a condition called Eosinophilic (white blood cells) Gastro, or esophogitis... it is an internal allergy in the digestive tract... he could have this and not test positive for allergies, but it is an allergy to foods that only effects the digestive tracts. Unfortunatly the main way to test for this is to do an endoscopy and sigmoidoscopy. and they take biopsies... they can also do a celiac biopsy. The symptoms for hte above are similar to that of celiac.

good luck! we had 9 and 11 on our sweat test but the Dr. isnt convinced that the test was done correctly...my son was screaming and throwing himslef around the whole time he had the electrodes and disks on....he was DONE being poked proded aNd messed with! so since he has confirmed pancreatic insufficiency (which is something they can test your child for with a stool test) our Dr isnt convinced of the sweat test...
 

fsuapril

New member
as we have learned through our process of elimination he could have a condition called Eosinophilic (white blood cells) Gastro, or esophogitis... it is an internal allergy in the digestive tract... he could have this and not test positive for allergies, but it is an allergy to foods that only effects the digestive tracts. Unfortunatly the main way to test for this is to do an endoscopy and sigmoidoscopy. and they take biopsies... they can also do a celiac biopsy. The symptoms for hte above are similar to that of celiac.

good luck! we had 9 and 11 on our sweat test but the Dr. isnt convinced that the test was done correctly...my son was screaming and throwing himslef around the whole time he had the electrodes and disks on....he was DONE being poked proded aNd messed with! so since he has confirmed pancreatic insufficiency (which is something they can test your child for with a stool test) our Dr isnt convinced of the sweat test...
 

fsuapril

New member
as we have learned through our process of elimination he could have a condition called Eosinophilic (white blood cells) Gastro, or esophogitis... it is an internal allergy in the digestive tract... he could have this and not test positive for allergies, but it is an allergy to foods that only effects the digestive tracts. Unfortunatly the main way to test for this is to do an endoscopy and sigmoidoscopy. and they take biopsies... they can also do a celiac biopsy. The symptoms for hte above are similar to that of celiac.

good luck! we had 9 and 11 on our sweat test but the Dr. isnt convinced that the test was done correctly...my son was screaming and throwing himslef around the whole time he had the electrodes and disks on....he was DONE being poked proded aNd messed with! so since he has confirmed pancreatic insufficiency (which is something they can test your child for with a stool test) our Dr isnt convinced of the sweat test...
 

fsuapril

New member
as we have learned through our process of elimination he could have a condition called Eosinophilic (white blood cells) Gastro, or esophogitis... it is an internal allergy in the digestive tract... he could have this and not test positive for allergies, but it is an allergy to foods that only effects the digestive tracts. Unfortunatly the main way to test for this is to do an endoscopy and sigmoidoscopy. and they take biopsies... they can also do a celiac biopsy. The symptoms for hte above are similar to that of celiac.

good luck! we had 9 and 11 on our sweat test but the Dr. isnt convinced that the test was done correctly...my son was screaming and throwing himslef around the whole time he had the electrodes and disks on....he was DONE being poked proded aNd messed with! so since he has confirmed pancreatic insufficiency (which is something they can test your child for with a stool test) our Dr isnt convinced of the sweat test...
 

AnnaH

New member
<div class="FTQUOTE"><begin quote>Wow Anna -- I've never heard of confirmed cases with sweat tests that low!! I was going to say that I've only heard of one case in the teens - generally speaking most people who report negative numbers but go on to get genetic proof test out in the 20's and 30's. </end quote></div>
Neither had our clinic.
One had symptoms that had been dismissed because of the sweat test, but the younger one was born with MI so they did the genetic testing.
I think they have delta f508.
 

AnnaH

New member
<div class="FTQUOTE"><begin quote>Wow Anna -- I've never heard of confirmed cases with sweat tests that low!! I was going to say that I've only heard of one case in the teens - generally speaking most people who report negative numbers but go on to get genetic proof test out in the 20's and 30's. </end quote></div>
Neither had our clinic.
One had symptoms that had been dismissed because of the sweat test, but the younger one was born with MI so they did the genetic testing.
I think they have delta f508.
 

AnnaH

New member
<div class="FTQUOTE"><begin quote>Wow Anna -- I've never heard of confirmed cases with sweat tests that low!! I was going to say that I've only heard of one case in the teens - generally speaking most people who report negative numbers but go on to get genetic proof test out in the 20's and 30's. </end quote></div>
Neither had our clinic.
One had symptoms that had been dismissed because of the sweat test, but the younger one was born with MI so they did the genetic testing.
I think they have delta f508.
 

AnnaH

New member
<div class="FTQUOTE"><begin quote>Wow Anna -- I've never heard of confirmed cases with sweat tests that low!! I was going to say that I've only heard of one case in the teens - generally speaking most people who report negative numbers but go on to get genetic proof test out in the 20's and 30's. </end quote>
Neither had our clinic.
One had symptoms that had been dismissed because of the sweat test, but the younger one was born with MI so they did the genetic testing.
I think they have delta f508.
 

AnnaH

New member
<div class="FTQUOTE"><begin quote>Wow Anna -- I've never heard of confirmed cases with sweat tests that low!! I was going to say that I've only heard of one case in the teens - generally speaking most people who report negative numbers but go on to get genetic proof test out in the 20's and 30's. </end quote>
Neither had our clinic.
One had symptoms that had been dismissed because of the sweat test, but the younger one was born with MI so they did the genetic testing.
I think they have delta f508.
 

LouLou

New member
My 3 month old son was just found to have 2 mutations. He had a negative sweat test but I pushed for a genetic test with my history of having cf I wanted to know for sure he didn't have it. Low and behold they found an additional mutation to the one I gave him. By the way he is not symptomatic.
 

LouLou

New member
My 3 month old son was just found to have 2 mutations. He had a negative sweat test but I pushed for a genetic test with my history of having cf I wanted to know for sure he didn't have it. Low and behold they found an additional mutation to the one I gave him. By the way he is not symptomatic.
 

LouLou

New member
My 3 month old son was just found to have 2 mutations. He had a negative sweat test but I pushed for a genetic test with my history of having cf I wanted to know for sure he didn't have it. Low and behold they found an additional mutation to the one I gave him. By the way he is not symptomatic.
 

LouLou

New member
My 3 month old son was just found to have 2 mutations. He had a negative sweat test but I pushed for a genetic test with my history of having cf I wanted to know for sure he didn't have it. Low and behold they found an additional mutation to the one I gave him. By the way he is not symptomatic.
 

LouLou

New member
My 3 month old son was just found to have 2 mutations. He had a negative sweat test but I pushed for a genetic test with my history of having cf I wanted to know for sure he didn't have it. Low and behold they found an additional mutation to the one I gave him. By the way he is not symptomatic.
 
Top