Do i have CF

[mike1]

hi there
i will try to keep this brief and not go into too much detail at least for now
..i've been battling with what i believe to be a undiagnosed and long untreated case of malabsorption (an unusual case which i always claim to be tremendously rare)..most food only makes me hungrier and the few foods that work for me happen to be carbohydrates (certain pastas and potatoes)
..i noticed in the last few months that sugary foods like corn, cocoa, honey or shreddies gives me heart palpotations and trouble sleeping (chest tightness, heavy heart beats)..i spit a lot also

i am 27 i performed a sweat test last month the doctor told me this week my results showed 65..i found today online that 50 or higher means CF..he told me to repeat the test in a couple of weeks

i have been battling with doctors for so long for a diagnosis many times told i need prozak because i'm either depressed or its "i'm my head"...
i had a 72 hour fat test with results of 17 grams and neither the doctor nor the lab know how to interpret the results...7grams or less/24 hrs is normal more means malabsorption but nobody can determine if the result on the sheet means 17 grams is the total grams of the 72 hours or if thats /24hours..mayoclinic says result values are shown as grams/24 hours but i live in canada so i dont' know

i have my next follow up appiontment with the doctor in June but i can't wait that long...do i most certainly have CF and can any further tests be suggested to do until then because i can't wait that long i need to do something until then...also i'm freaking out because i'm just learning about CF now and read that CF patients live short lives?? can someone please help

 

[mike1]

hi there
i will try to keep this brief and not go into too much detail at least for now
..i've been battling with what i believe to be a undiagnosed and long untreated case of malabsorption (an unusual case which i always claim to be tremendously rare)..most food only makes me hungrier and the few foods that work for me happen to be carbohydrates (certain pastas and potatoes)
..i noticed in the last few months that sugary foods like corn, cocoa, honey or shreddies gives me heart palpotations and trouble sleeping (chest tightness, heavy heart beats)..i spit a lot also

i am 27 i performed a sweat test last month the doctor told me this week my results showed 65..i found today online that 50 or higher means CF..he told me to repeat the test in a couple of weeks

i have been battling with doctors for so long for a diagnosis many times told i need prozak because i'm either depressed or its "i'm my head"...
i had a 72 hour fat test with results of 17 grams and neither the doctor nor the lab know how to interpret the results...7grams or less/24 hrs is normal more means malabsorption but nobody can determine if the result on the sheet means 17 grams is the total grams of the 72 hours or if thats /24hours..mayoclinic says result values are shown as grams/24 hours but i live in canada so i dont' know

i have my next follow up appiontment with the doctor in June but i can't wait that long...do i most certainly have CF and can any further tests be suggested to do until then because i can't wait that long i need to do something until then...also i'm freaking out because i'm just learning about CF now and read that CF patients live short lives?? can someone please help

 

[mike1]

hi there
<br />i will try to keep this brief and not go into too much detail at least for now
<br />..i've been battling with what i believe to be a undiagnosed and long untreated case of malabsorption (an unusual case which i always claim to be tremendously rare)..most food only makes me hungrier and the few foods that work for me happen to be carbohydrates (certain pastas and potatoes)
<br />..i noticed in the last few months that sugary foods like corn, cocoa, honey or shreddies gives me heart palpotations and trouble sleeping (chest tightness, heavy heart beats)..i spit a lot also
<br />
<br />i am 27 i performed a sweat test last month the doctor told me this week my results showed 65..i found today online that 50 or higher means CF..he told me to repeat the test in a couple of weeks
<br />
<br />i have been battling with doctors for so long for a diagnosis many times told i need prozak because i'm either depressed or its "i'm my head"...
<br />i had a 72 hour fat test with results of 17 grams and neither the doctor nor the lab know how to interpret the results...7grams or less/24 hrs is normal more means malabsorption but nobody can determine if the result on the sheet means 17 grams is the total grams of the 72 hours or if thats /24hours..mayoclinic says result values are shown as grams/24 hours but i live in canada so i dont' know
<br />
<br />i have my next follow up appiontment with the doctor in June but i can't wait that long...do i most certainly have CF and can any further tests be suggested to do until then because i can't wait that long i need to do something until then...also i'm freaking out because i'm just learning about CF now and read that CF patients live short lives?? can someone please help

 

[Printer]

Hi:

You need to be seeing a Doctor at a CF Center. You may like your Doctor but you need more expertese. There is a great research center in Toronto or go to CFF.COM and find a "approved" center near you.

Good luck,
Bill

 

[Printer]

Hi:

You need to be seeing a Doctor at a CF Center. You may like your Doctor but you need more expertese. There is a great research center in Toronto or go to CFF.COM and find a "approved" center near you.

Good luck,
Bill

 

[Printer]

Hi:
<br />
<br />You need to be seeing a Doctor at a CF Center. You may like your Doctor but you need more expertese. There is a great research center in Toronto or go to CFF.COM and find a "approved" center near you.
<br />
<br />Good luck,
<br />Bill

 

[mike1]

thanks for the info..is there anything you can tell me about the 72 hour fat results? this is what i'm dealing with

lab: "we dont' know how to interpret the results, consult your doctor"

doctor: "i don't understand the results, call the lab"

i'm thinking maybe i should call a plumber maybe he'll know

 

[mike1]

thanks for the info..is there anything you can tell me about the 72 hour fat results? this is what i'm dealing with

lab: "we dont' know how to interpret the results, consult your doctor"

doctor: "i don't understand the results, call the lab"

i'm thinking maybe i should call a plumber maybe he'll know

 

[mike1]

thanks for the info..is there anything you can tell me about the 72 hour fat results? this is what i'm dealing with
<br />
<br />lab: "we dont' know how to interpret the results, consult your doctor"
<br />
<br />doctor: "i don't understand the results, call the lab"
<br />
<br />i'm thinking maybe i should call a plumber maybe he'll know

 

[Havoc]

I am not familiar with the fat test either, I would consult another specialist and rule some things (including CF)and go from there. CF can be very strange, with isolated symptoms or barely noticeable symptoms.

 

[Havoc]

I am not familiar with the fat test either, I would consult another specialist and rule some things (including CF)and go from there. CF can be very strange, with isolated symptoms or barely noticeable symptoms.

 

[Havoc]

I am not familiar with the fat test either, I would consult another specialist and rule some things (including CF)and go from there. CF can be very strange, with isolated symptoms or barely noticeable symptoms.

 

[AimeeSue82]

Hi mike1! i don't know if you have CF and I'm not familiar with the 72 hour test either, but I can tell you one thing: if you do have CF and you're 27 with only digestive issues (no lung involvement) don't worry too much about what you've read about life expectancy. You're already beating the odds! find a cf clinic in your area (even without a diagnosis, they can give you another sweat test) and will interpret results correctly! Good luck!
~Aimee, 28 w/ CF (PA & MRSA)

 

[AimeeSue82]

Hi mike1! i don't know if you have CF and I'm not familiar with the 72 hour test either, but I can tell you one thing: if you do have CF and you're 27 with only digestive issues (no lung involvement) don't worry too much about what you've read about life expectancy. You're already beating the odds! find a cf clinic in your area (even without a diagnosis, they can give you another sweat test) and will interpret results correctly! Good luck!
~Aimee, 28 w/ CF (PA & MRSA)

 

[AimeeSue82]

Hi mike1! i don't know if you have CF and I'm not familiar with the 72 hour test either, but I can tell you one thing: if you do have CF and you're 27 with only digestive issues (no lung involvement) don't worry too much about what you've read about life expectancy. You're already beating the odds! find a cf clinic in your area (even without a diagnosis, they can give you another sweat test) and will interpret results correctly! Good luck!
<br />~Aimee, 28 w/ CF (PA & MRSA)

 

[mike1]

i appreciate the responses i honestly did not mean to sound so insensitive in my post..its been a very hectic last few days..if i shared my story with you guys about my ordeals with doctors you would be baffled

i am schedule for a 2nd sweat test in 2 weeks..from what i read 65 is very high though my doctor who i saw for the first time didn't seem overly concerned the bottom line is i don't know what to think doctors have been provided very little comfort and help for me over the years..these kinds of forums have been so much more beneficial to be honest

regardless of what i'm dealing with i wish everyone here all my best and thanks again

 

[mike1]

i appreciate the responses i honestly did not mean to sound so insensitive in my post..its been a very hectic last few days..if i shared my story with you guys about my ordeals with doctors you would be baffled

i am schedule for a 2nd sweat test in 2 weeks..from what i read 65 is very high though my doctor who i saw for the first time didn't seem overly concerned the bottom line is i don't know what to think doctors have been provided very little comfort and help for me over the years..these kinds of forums have been so much more beneficial to be honest

regardless of what i'm dealing with i wish everyone here all my best and thanks again

 

[mike1]

i appreciate the responses i honestly did not mean to sound so insensitive in my post..its been a very hectic last few days..if i shared my story with you guys about my ordeals with doctors you would be baffled
<br />
<br />i am schedule for a 2nd sweat test in 2 weeks..from what i read 65 is very high though my doctor who i saw for the first time didn't seem overly concerned the bottom line is i don't know what to think doctors have been provided very little comfort and help for me over the years..these kinds of forums have been so much more beneficial to be honest
<br />
<br />regardless of what i'm dealing with i wish everyone here all my best and thanks again

 

[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?

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.)

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.

 

[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?

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.)

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.