How were you tested for pancreatic insufficiency?

[2005CFmom]

My daughter, being diagnosed at age 8 with double Df508 and only 42 lbs, they knew she was PI. She has never had a GI test to determine it. They started her on a low dose of enzymes and she started to gain weight. The dose has been gradually increased over time.
<br />
<br />I say just try the enzymes to see if they help. Maybe the doctor even can give a supply of samples to try before you fill a prescription.

 

[hmw]

Yes, Lauren, this is a reputable/commonly performed test. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br>
<br>Here is some info about it. <A HREF="http://www.nlm.nih.gov/medlineplus/ency/article/003892.htm">http://www.nlm.nih.gov/medlineplus/ency/article/003892.htm</A>
<br>
<br>I have heard of other kids having the test done, not just to determine pancreatic insufficiency in CF but also to aid in figuring out the cause of other pancreatic problems (i.e. chronic pancreatitis in children with other disorders like mito disease.)

 

[hmw]

Yes, Lauren, this is a reputable/commonly performed test. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br>
<br>Here is some info about it. <A HREF="http://www.nlm.nih.gov/medlineplus/ency/article/003892.htm">http://www.nlm.nih.gov/medlineplus/ency/article/003892.htm</A>
<br>
<br>I have heard of other kids having the test done, not just to determine pancreatic insufficiency in CF but also to aid in figuring out the cause of other pancreatic problems (i.e. chronic pancreatitis in children with other disorders like mito disease.)

 

[hmw]

Yes, Lauren, this is a reputable/commonly performed test. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br>
<br>Here is some info about it. <A HREF="http://www.nlm.nih.gov/medlineplus/ency/article/003892.htm">http://www.nlm.nih.gov/medlineplus/ency/article/003892.htm</A>
<br>
<br>I have heard of other kids having the test done, not just to determine pancreatic insufficiency in CF but also to aid in figuring out the cause of other pancreatic problems (i.e. chronic pancreatitis in children with other disorders like mito disease.)

 

[Mistyjo]

My daughter is also ftt and bmi is 3%. Her fecal elestase was normal, but I have read that fecal elestase can miss mild cases of PI. Our Cf doc is starting my daughter on enzymes and if she gains weight on them then he is doing the pancrease stimulation test. She doesn't start the enzymes until end of August b/c healing from bowel resection surgery.

 

[Mistyjo]

My daughter is also ftt and bmi is 3%. Her fecal elestase was normal, but I have read that fecal elestase can miss mild cases of PI. Our Cf doc is starting my daughter on enzymes and if she gains weight on them then he is doing the pancrease stimulation test. She doesn't start the enzymes until end of August b/c healing from bowel resection surgery.

 

[Mistyjo]

My daughter is also ftt and bmi is 3%. Her fecal elestase was normal, but I have read that fecal elestase can miss mild cases of PI. Our Cf doc is starting my daughter on enzymes and if she gains weight on them then he is doing the pancrease stimulation test. She doesn't start the enzymes until end of August b/c healing from bowel resection surgery.

 

[janddburke]

My daughter was diagnosed at 5months due to respiratory symptoms. They put her on enzymes after testing her stool (but we never questioned the results)
5 years later, after doing some research on the web and the fact that her enzyme dosage was little changed, we stopped cold turkey ( with the doc's blessing over a long weekend just in case)
Turns out she was pancreatic sufficient all along.
At that time the common belief was all kids needed enzymes. But we know better now (and have this forum for feedback!)

 

[janddburke]

My daughter was diagnosed at 5months due to respiratory symptoms. They put her on enzymes after testing her stool (but we never questioned the results)
5 years later, after doing some research on the web and the fact that her enzyme dosage was little changed, we stopped cold turkey ( with the doc's blessing over a long weekend just in case)
Turns out she was pancreatic sufficient all along.
At that time the common belief was all kids needed enzymes. But we know better now (and have this forum for feedback!)

 

[janddburke]

My daughter was diagnosed at 5months due to respiratory symptoms. They put her on enzymes after testing her stool (but we never questioned the results)
<br />5 years later, after doing some research on the web and the fact that her enzyme dosage was little changed, we stopped cold turkey ( with the doc's blessing over a long weekend just in case)
<br />Turns out she was pancreatic sufficient all along.
<br />At that time the common belief was all kids needed enzymes. But we know better now (and have this forum for feedback!)
<br />

 

[LouLou]

I believe there is an additional test you didn't mention noticeable through bloodwork....something like Amylase or Lipase. I was started on enzymes as I was diagnosed with cf in 1980 through sweat test. At that point, I believe they thought everyone who failed the sweat test was PI...not totally sure on this one though.

 

[LouLou]

I believe there is an additional test you didn't mention noticeable through bloodwork....something like Amylase or Lipase. I was started on enzymes as I was diagnosed with cf in 1980 through sweat test. At that point, I believe they thought everyone who failed the sweat test was PI...not totally sure on this one though.

 

[LouLou]

I believe there is an additional test you didn't mention noticeable through bloodwork....something like Amylase or Lipase. I was started on enzymes as I was diagnosed with cf in 1980 through sweat test. At that point, I believe they thought everyone who failed the sweat test was PI...not totally sure on this one though.

 

[hmw]

Serum lipase and amylase can be checked, though it's not a cf-specific test. It is routinely done when someone is suspected of having pancreatitis (levels are elevated in that case.) I'd assume it's due to the non-specific nature of this test (other sources cite normal values as 0-160!) that fecal testing is now done first.

<A HREF="http://www.labtestsonline.org.au/understanding/analytes/lipase/test.html">http://www.labtestsonline.org.au/understanding/analytes/lipase/test.html</A>

 

[hmw]

Serum lipase and amylase can be checked, though it's not a cf-specific test. It is routinely done when someone is suspected of having pancreatitis (levels are elevated in that case.) I'd assume it's due to the non-specific nature of this test (other sources cite normal values as 0-160!) that fecal testing is now done first.

<A HREF="http://www.labtestsonline.org.au/understanding/analytes/lipase/test.html">http://www.labtestsonline.org.au/understanding/analytes/lipase/test.html</A>

 

[hmw]

Serum lipase and amylase can be checked, though it's not a cf-specific test. It is routinely done when someone is suspected of having pancreatitis (levels are elevated in that case.) I'd assume it's due to the non-specific nature of this test (other sources cite normal values as 0-160!) that fecal testing is now done first.
<br />
<br /><A HREF="http://www.labtestsonline.org.au/understanding/analytes/lipase/test.html">http://www.labtestsonline.org.au/understanding/analytes/lipase/test.html</A>
<br />
<br />

 

[Kate32]

<P>I saw someone say (if I understood correctly) that they were conclusive for PI with a stool elastase of 400.  I've been told that I'm pancreatic sufficient with elastase levels fluctuating between 250-290.  Is this accurate in everyone else's experience? It's confusing...</P>
<P> </P>
<P>Thanks!!</P>

 

[Kate32]

<P>I saw someone say (if I understood correctly) that they were conclusive for PI with a stool elastase of 400. I've been told that I'm pancreatic sufficient with elastase levels fluctuating between 250-290. Is this accurate in everyone else's experience? It's confusing...</P>
<P></P>
<P>Thanks!!</P>

 

[Kate32]

<P>I saw someone say (if I understood correctly) that they were conclusive for PI with a stool elastase of 400. I've been told that I'm pancreatic sufficient with elastase levels fluctuating between 250-290. Is this accurate in everyone else's experience? It's confusing...</P>
<P></P>
<P>Thanks!!<BR></P>

 

[Beccamom]

<P>Harriet,</P>
<P> </P>
<P>Thanks for the info.  My daughter had the those tests and we were told they were to determine if she had pacreatitis.  She ended up having Influenza B despite having had the flu shot 11 years straight.  They were both elevated, but not high enough for pancreatitis.</P>
<P> </P>
<P>As for the elastace Quest processed my daughter's test and the lab paperwork says normal >200, moderate pancreatic insufficiency 100-200, and severe pancreatic insufficiency <100.  However, both GIs I am working with agree that a mild insufficiency is 200 to 500 and they would agree to in one case the panreatic stimulation test with a elastace betwee 200 and 500 and the other GI would just give enzymes a try between 200 and 500.  </P>