Do i have CF

[hmw]

Fat malabsorption is common in CF but not diagnostic (there can be other causes for that.) Especially since no one knows how to interpret your test results (at this point I would wonder if the test was even done properly), I would ask for a fecal ELASTASE test, which tests for pancreatic insufficiency- much more diagnostic for CF. Are your digestive issues accompanied by difficulty gaining/maintaining your weight, weight loss when ill, etc?
<br />
<br />Yes, a sweat test of 65 is positive. However, was it done at a lab affiliated with a CF center or just a local lab? It should be performed by a cf-center lab to ensure accuracy. In any case, a positive result is usually repeated anyway to be sure. Genetic sequencing should also be done. Especially for those who present with symptoms later on, the simple panel tests are often not enough for a diagnosis so the thorough sequencing tests are needed (a panel only looks for a small number of the 1600+ disease-causing mutations.)
<br />
<br />I would definitely make an appointment at a cf center to get the appropriate testing and to be able to speak with a dr that is knowledgeable about cf. Your symptoms can go either way, so you need a knowledgeable dr to order more testing to help rule it in or out so you can get the appropriate care, whether it's CF or something else.

 

[mike1]

i will try to arrange an appointment at a cf center this week..the sweat chloride test was performed at just a local hospital close to my house..all the tests that i had performed over the years were all my idea..i begged doctors..i had been researching malabsorption treatment/tests and anything i could find i would write it down and ask the doctor about it..i've had 3 GP's over the year say my blood tests are normal, albumin levels are good and i'm completely healthy..i think doctors are just in it for the $$$ a lot of them sound ocmpletely clueless

what is bugging me now is i don't remember if the doctor told me my results were 55 or 65 i'll have to wait to find out this week after i call the office

i gave doctors all the clues they needed i was sick for years but they just sat on their ass and looked at the clock..

one of those clues was that i stopped lifting weights a few years ago because i was not gaining any definition..that to me is protein malabsorption..i love exercising in general but usually am too hungry and have no energy to do it..i have a highly powerful and unusual case of malabsorption..i can gain weight if i want but only with the few foods i can eat..
i have had pancreatic ct scans/scopes..the doctors said i was A okay..if it wasn't for me pushing them for more i wouldn't know a dam thing..they dont take me seriously based on my looks

i'm wondering what is a common problem among most people with CF so it would be easier for me to know if it is CF or something else? most places i read about lung issues but i don't really have any problems there unless i eat sugar ie: honey, some fruits, shreddies..then i feel a tighness in my chest and i feel like a trapped gas thing happens because i start belching like crazy

 

[mike1]

i will try to arrange an appointment at a cf center this week..the sweat chloride test was performed at just a local hospital close to my house..all the tests that i had performed over the years were all my idea..i begged doctors..i had been researching malabsorption treatment/tests and anything i could find i would write it down and ask the doctor about it..i've had 3 GP's over the year say my blood tests are normal, albumin levels are good and i'm completely healthy..i think doctors are just in it for the $$$ a lot of them sound ocmpletely clueless

what is bugging me now is i don't remember if the doctor told me my results were 55 or 65 i'll have to wait to find out this week after i call the office

i gave doctors all the clues they needed i was sick for years but they just sat on their ass and looked at the clock..

one of those clues was that i stopped lifting weights a few years ago because i was not gaining any definition..that to me is protein malabsorption..i love exercising in general but usually am too hungry and have no energy to do it..i have a highly powerful and unusual case of malabsorption..i can gain weight if i want but only with the few foods i can eat..
i have had pancreatic ct scans/scopes..the doctors said i was A okay..if it wasn't for me pushing them for more i wouldn't know a dam thing..they dont take me seriously based on my looks

i'm wondering what is a common problem among most people with CF so it would be easier for me to know if it is CF or something else? most places i read about lung issues but i don't really have any problems there unless i eat sugar ie: honey, some fruits, shreddies..then i feel a tighness in my chest and i feel like a trapped gas thing happens because i start belching like crazy

 

[mike1]

i will try to arrange an appointment at a cf center this week..the sweat chloride test was performed at just a local hospital close to my house..all the tests that i had performed over the years were all my idea..i begged doctors..i had been researching malabsorption treatment/tests and anything i could find i would write it down and ask the doctor about it..i've had 3 GP's over the year say my blood tests are normal, albumin levels are good and i'm completely healthy..i think doctors are just in it for the $$$ a lot of them sound ocmpletely clueless
<br />
<br />what is bugging me now is i don't remember if the doctor told me my results were 55 or 65 i'll have to wait to find out this week after i call the office
<br />
<br />i gave doctors all the clues they needed i was sick for years but they just sat on their ass and looked at the clock..
<br />
<br />one of those clues was that i stopped lifting weights a few years ago because i was not gaining any definition..that to me is protein malabsorption..i love exercising in general but usually am too hungry and have no energy to do it..i have a highly powerful and unusual case of malabsorption..i can gain weight if i want but only with the few foods i can eat..
<br />i have had pancreatic ct scans/scopes..the doctors said i was A okay..if it wasn't for me pushing them for more i wouldn't know a dam thing..they dont take me seriously based on my looks
<br />
<br />i'm wondering what is a common problem among most people with CF so it would be easier for me to know if it is CF or something else? most places i read about lung issues but i don't really have any problems there unless i eat sugar ie: honey, some fruits, shreddies..then i feel a tighness in my chest and i feel like a trapped gas thing happens because i start belching like crazy

 

[hmw]

Eating certain foods resulting in gas and belching is a digestive thing, not a lung thing (despite feeling that 'tightness.')

When asking about respiratory symptoms, I meant more like... do you get frequent respiratory infections, or when you do get a cold/virus does it typically progress to bronchitis, pneumonia, etc? Do you have frequent sinus infections or have you ever been dx'ed with asthma?

Seeing a CF specialist would be good because they would know what questions to ask you that would point toward specific CF-related problems.

There are many types of malabsorption (protein, fat, carbohydrate) and many causes for it. That was why I suggested the Fecal Elastase test, since that is a specific test for exocrine pancreatic insufficiency (elastase is a specific enzyme released by the pancreas during digestion and is often- but not always- present in low amounts in those with cf due to how the disease affects the pancreas.) It's a non-invasive test, only requiring stool samples, and when combined with fecal fat analysis can be a valuable diagnostic tool.

I would try to get copies of all test results, etc that you've had done over the years with the various drs you've seen. If you have limited success doing this with the individual drs, go to the medical records dept at the hospitals where the tests were done, sign releases and fill out the range of dates when the tests were done and ask for everything. This will give you valuable information to provide to who sees you next.

 

[hmw]

Eating certain foods resulting in gas and belching is a digestive thing, not a lung thing (despite feeling that 'tightness.')

When asking about respiratory symptoms, I meant more like... do you get frequent respiratory infections, or when you do get a cold/virus does it typically progress to bronchitis, pneumonia, etc? Do you have frequent sinus infections or have you ever been dx'ed with asthma?

Seeing a CF specialist would be good because they would know what questions to ask you that would point toward specific CF-related problems.

There are many types of malabsorption (protein, fat, carbohydrate) and many causes for it. That was why I suggested the Fecal Elastase test, since that is a specific test for exocrine pancreatic insufficiency (elastase is a specific enzyme released by the pancreas during digestion and is often- but not always- present in low amounts in those with cf due to how the disease affects the pancreas.) It's a non-invasive test, only requiring stool samples, and when combined with fecal fat analysis can be a valuable diagnostic tool.

I would try to get copies of all test results, etc that you've had done over the years with the various drs you've seen. If you have limited success doing this with the individual drs, go to the medical records dept at the hospitals where the tests were done, sign releases and fill out the range of dates when the tests were done and ask for everything. This will give you valuable information to provide to who sees you next.

 

[hmw]

Eating certain foods resulting in gas and belching is a digestive thing, not a lung thing (despite feeling that 'tightness.')
<br />
<br />When asking about respiratory symptoms, I meant more like... do you get frequent respiratory infections, or when you do get a cold/virus does it typically progress to bronchitis, pneumonia, etc? Do you have frequent sinus infections or have you ever been dx'ed with asthma?
<br />
<br />Seeing a CF specialist would be good because they would know what questions to ask you that would point toward specific CF-related problems.
<br />
<br />There are many types of malabsorption (protein, fat, carbohydrate) and many causes for it. That was why I suggested the Fecal Elastase test, since that is a specific test for exocrine pancreatic insufficiency (elastase is a specific enzyme released by the pancreas during digestion and is often- but not always- present in low amounts in those with cf due to how the disease affects the pancreas.) It's a non-invasive test, only requiring stool samples, and when combined with fecal fat analysis can be a valuable diagnostic tool.
<br />
<br />I would try to get copies of all test results, etc that you've had done over the years with the various drs you've seen. If you have limited success doing this with the individual drs, go to the medical records dept at the hospitals where the tests were done, sign releases and fill out the range of dates when the tests were done and ask for everything. This will give you valuable information to provide to who sees you next.

 

[mike1]

yea thats what i think to, my symptoms are mostly digestion related..i will note the elastase test
i'm definately going to make a visit to a cf center whenever is possible and you're right about having copies of test results i actually plan on making a few trips within the next couple weeks from all my doctors so i can have copies for my self//

 

[mike1]

yea thats what i think to, my symptoms are mostly digestion related..i will note the elastase test
i'm definately going to make a visit to a cf center whenever is possible and you're right about having copies of test results i actually plan on making a few trips within the next couple weeks from all my doctors so i can have copies for my self//

 

[mike1]

yea thats what i think to, my symptoms are mostly digestion related..i will note the elastase test
<br />i'm definately going to make a visit to a cf center whenever is possible and you're right about having copies of test results i actually plan on making a few trips within the next couple weeks from all my doctors so i can have copies for my self//