<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mama2emmett</b></i>
Is it possible that it could be CF even without a failure to thrive or obvious GI involvement?
Meg</end quote></div>
Yes, many people with CF are pancreatic sufficient. I think the numbers are something like around 15%. Both my kids are PS and have no GI issues at all.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>websterhome</b></i>
Anyway, once we knew Lucy had it, they still wanted to do a sweat chloride test because it's considered the "gold standard" of CF diagnosis. I asked if it was possible for her sweat test to be negative even though her DNA test was positive, they said it would be incredibly unlikely. Christy</end quote></div>
I don't agree with the words "incredibly unlikely" as my kids, along with many others on this list have a negative sweat test but a positive DNA test. This is becoming more preventable as we see more people with a class IV or V gene type.
"Gold Standard" sweat testing if fine as long as you get a good clearly high positive number. But there are a lot of people out there with symptoms and a normal sweat test number, who fight tooth and nail to get genetic testing and find out that yep, it is indeed CF.
It does seem kind of funny when they do the sweat testing after DNA testing though huh? After 3 sweat tests, we were told that our daughter did not have CF... 8 years later DNA testing confirmed that she did in fact have 2 genes. A couple of years after that, the doctor decided to repeat the sweat test, and it still was exactly as it had been 10 years prior... 38.
Welcome to the site - both of you!
Is it possible that it could be CF even without a failure to thrive or obvious GI involvement?
Meg</end quote></div>
Yes, many people with CF are pancreatic sufficient. I think the numbers are something like around 15%. Both my kids are PS and have no GI issues at all.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>websterhome</b></i>
Anyway, once we knew Lucy had it, they still wanted to do a sweat chloride test because it's considered the "gold standard" of CF diagnosis. I asked if it was possible for her sweat test to be negative even though her DNA test was positive, they said it would be incredibly unlikely. Christy</end quote></div>
I don't agree with the words "incredibly unlikely" as my kids, along with many others on this list have a negative sweat test but a positive DNA test. This is becoming more preventable as we see more people with a class IV or V gene type.
"Gold Standard" sweat testing if fine as long as you get a good clearly high positive number. But there are a lot of people out there with symptoms and a normal sweat test number, who fight tooth and nail to get genetic testing and find out that yep, it is indeed CF.
It does seem kind of funny when they do the sweat testing after DNA testing though huh? After 3 sweat tests, we were told that our daughter did not have CF... 8 years later DNA testing confirmed that she did in fact have 2 genes. A couple of years after that, the doctor decided to repeat the sweat test, and it still was exactly as it had been 10 years prior... 38.
Welcome to the site - both of you!