need help understanding a test result

[Buckeye]

You will quickly find out that very few doctors other than cf clinic doctors know very much about CF at all. My son sees many specialists for things not related to CF and every single one of them looked at me like I had three heads when I told them he had been diagnosed with CF. I started taking the official letter from the CF clinic with me when I see other doctors now so they don't think I'm losing my mind. I think most doctors learned about CF 20 years ago in medical school and then never see it again. On the other thread you mentioned his sweat test may have been wrong because he was sick. Malnutrition is a cause for a false positive sweat test and there are some diseases that cause high sweat tests also (Celiac Disease, Hypothyroidism, Nephrogenic Diabetes Insipidus, etc). The CF clinic will probably run tests to rule out any of those causes also. I don't want to get your hopes up though because besides Celiac Disease the other diseases are fairly rare. I'm in the same boat you are. My son has been diagnosed with cf although his genetics came back with no mutations. It's a strange boat to be in.

 

[Buckeye]

You will quickly find out that very few doctors other than cf clinic doctors know very much about CF at all. My son sees many specialists for things not related to CF and every single one of them looked at me like I had three heads when I told them he had been diagnosed with CF. I started taking the official letter from the CF clinic with me when I see other doctors now so they don't think I'm losing my mind. I think most doctors learned about CF 20 years ago in medical school and then never see it again. On the other thread you mentioned his sweat test may have been wrong because he was sick. Malnutrition is a cause for a false positive sweat test and there are some diseases that cause high sweat tests also (Celiac Disease, Hypothyroidism, Nephrogenic Diabetes Insipidus, etc). The CF clinic will probably run tests to rule out any of those causes also. I don't want to get your hopes up though because besides Celiac Disease the other diseases are fairly rare. I'm in the same boat you are. My son has been diagnosed with cf although his genetics came back with no mutations. It's a strange boat to be in.

 

[Buckeye]

You will quickly find out that very few doctors other than cf clinic doctors know very much about CF at all. My son sees many specialists for things not related to CF and every single one of them looked at me like I had three heads when I told them he had been diagnosed with CF. I started taking the official letter from the CF clinic with me when I see other doctors now so they don't think I'm losing my mind. I think most doctors learned about CF 20 years ago in medical school and then never see it again. On the other thread you mentioned his sweat test may have been wrong because he was sick. Malnutrition is a cause for a false positive sweat test and there are some diseases that cause high sweat tests also (Celiac Disease, Hypothyroidism, Nephrogenic Diabetes Insipidus, etc). The CF clinic will probably run tests to rule out any of those causes also. I don't want to get your hopes up though because besides Celiac Disease the other diseases are fairly rare. I'm in the same boat you are. My son has been diagnosed with cf although his genetics came back with no mutations. It's a strange boat to be in.

 

[Buckeye]

You will quickly find out that very few doctors other than cf clinic doctors know very much about CF at all. My son sees many specialists for things not related to CF and every single one of them looked at me like I had three heads when I told them he had been diagnosed with CF. I started taking the official letter from the CF clinic with me when I see other doctors now so they don't think I'm losing my mind. I think most doctors learned about CF 20 years ago in medical school and then never see it again. On the other thread you mentioned his sweat test may have been wrong because he was sick. Malnutrition is a cause for a false positive sweat test and there are some diseases that cause high sweat tests also (Celiac Disease, Hypothyroidism, Nephrogenic Diabetes Insipidus, etc). The CF clinic will probably run tests to rule out any of those causes also. I don't want to get your hopes up though because besides Celiac Disease the other diseases are fairly rare. I'm in the same boat you are. My son has been diagnosed with cf although his genetics came back with no mutations. It's a strange boat to be in.

 

[Buckeye]

You will quickly find out that very few doctors other than cf clinic doctors know very much about CF at all. My son sees many specialists for things not related to CF and every single one of them looked at me like I had three heads when I told them he had been diagnosed with CF. I started taking the official letter from the CF clinic with me when I see other doctors now so they don't think I'm losing my mind. I think most doctors learned about CF 20 years ago in medical school and then never see it again. On the other thread you mentioned his sweat test may have been wrong because he was sick. Malnutrition is a cause for a false positive sweat test and there are some diseases that cause high sweat tests also (Celiac Disease, Hypothyroidism, Nephrogenic Diabetes Insipidus, etc). The CF clinic will probably run tests to rule out any of those causes also. I don't want to get your hopes up though because besides Celiac Disease the other diseases are fairly rare. I'm in the same boat you are. My son has been diagnosed with cf although his genetics came back with no mutations. It's a strange boat to be in.

 

[badjaw]

that is what i am hoping bc they keep doing pancreas elastays test and they are moving up. a month ago it was 195 over 200 normal. and his preabumin? (nutrition test) was 19 at time of sweat test. over 40 is average low, i think it goes to 100. not sure.

i will have to let everyone know the outcome on Dec18th the big day, right before christmas.

thanks

 

[badjaw]

that is what i am hoping bc they keep doing pancreas elastays test and they are moving up. a month ago it was 195 over 200 normal. and his preabumin? (nutrition test) was 19 at time of sweat test. over 40 is average low, i think it goes to 100. not sure.

i will have to let everyone know the outcome on Dec18th the big day, right before christmas.

thanks

 

[badjaw]

that is what i am hoping bc they keep doing pancreas elastays test and they are moving up. a month ago it was 195 over 200 normal. and his preabumin? (nutrition test) was 19 at time of sweat test. over 40 is average low, i think it goes to 100. not sure.

i will have to let everyone know the outcome on Dec18th the big day, right before christmas.

thanks

 

[badjaw]

that is what i am hoping bc they keep doing pancreas elastays test and they are moving up. a month ago it was 195 over 200 normal. and his preabumin? (nutrition test) was 19 at time of sweat test. over 40 is average low, i think it goes to 100. not sure.

i will have to let everyone know the outcome on Dec18th the big day, right before christmas.

thanks

 

[badjaw]

that is what i am hoping bc they keep doing pancreas elastays test and they are moving up. a month ago it was 195 over 200 normal. and his preabumin? (nutrition test) was 19 at time of sweat test. over 40 is average low, i think it goes to 100. not sure.

i will have to let everyone know the outcome on Dec18th the big day, right before christmas.

thanks

 

[peanut07]

My child has had genetic testing come back negative and had a positive sweat test. There are no symptoms and the pancreatic function test and fecal fat test all just came back normal this week. Chest xray is normal, pulmonary function way over 100%. Not culturing anything. Never been very ill, never been on antibiotics. We are in awe but we are going to follow up as though it is CF. Regular visits to the CF clinic, Annual blood draws, chest xray, cultures. The assumption is being made that there are unknown mutations. It is odd to some, but the cf speacialist says sweat test is gold standard and diagnostic.

It has been a blow and come out of right field but we are taking it day by day. I wish you all the best. I just watned to let you know that there can be cf with no found mutations.

Good Luck

 

[peanut07]

My child has had genetic testing come back negative and had a positive sweat test. There are no symptoms and the pancreatic function test and fecal fat test all just came back normal this week. Chest xray is normal, pulmonary function way over 100%. Not culturing anything. Never been very ill, never been on antibiotics. We are in awe but we are going to follow up as though it is CF. Regular visits to the CF clinic, Annual blood draws, chest xray, cultures. The assumption is being made that there are unknown mutations. It is odd to some, but the cf speacialist says sweat test is gold standard and diagnostic.

It has been a blow and come out of right field but we are taking it day by day. I wish you all the best. I just watned to let you know that there can be cf with no found mutations.

Good Luck

 

[peanut07]

My child has had genetic testing come back negative and had a positive sweat test. There are no symptoms and the pancreatic function test and fecal fat test all just came back normal this week. Chest xray is normal, pulmonary function way over 100%. Not culturing anything. Never been very ill, never been on antibiotics. We are in awe but we are going to follow up as though it is CF. Regular visits to the CF clinic, Annual blood draws, chest xray, cultures. The assumption is being made that there are unknown mutations. It is odd to some, but the cf speacialist says sweat test is gold standard and diagnostic.

It has been a blow and come out of right field but we are taking it day by day. I wish you all the best. I just watned to let you know that there can be cf with no found mutations.

Good Luck

 

[peanut07]

My child has had genetic testing come back negative and had a positive sweat test. There are no symptoms and the pancreatic function test and fecal fat test all just came back normal this week. Chest xray is normal, pulmonary function way over 100%. Not culturing anything. Never been very ill, never been on antibiotics. We are in awe but we are going to follow up as though it is CF. Regular visits to the CF clinic, Annual blood draws, chest xray, cultures. The assumption is being made that there are unknown mutations. It is odd to some, but the cf speacialist says sweat test is gold standard and diagnostic.

It has been a blow and come out of right field but we are taking it day by day. I wish you all the best. I just watned to let you know that there can be cf with no found mutations.

Good Luck

 

[peanut07]

My child has had genetic testing come back negative and had a positive sweat test. There are no symptoms and the pancreatic function test and fecal fat test all just came back normal this week. Chest xray is normal, pulmonary function way over 100%. Not culturing anything. Never been very ill, never been on antibiotics. We are in awe but we are going to follow up as though it is CF. Regular visits to the CF clinic, Annual blood draws, chest xray, cultures. The assumption is being made that there are unknown mutations. It is odd to some, but the cf speacialist says sweat test is gold standard and diagnostic.

It has been a blow and come out of right field but we are taking it day by day. I wish you all the best. I just watned to let you know that there can be cf with no found mutations.

Good Luck