questions about pancreatic insuffiency

[stringbean]

Is it possible to mistake pancreatic insufficiency for any other condition? We did the 72 hour fecal fat test last February and my daughter (7 yr old at the time) was diagnosed as PI and she immediately started taking enzymes. She had an AMAZING transformation once she started on those pills -- all of her frantic behavior disappeared. It may have improved her behavior, but unfortunately it hasn't done a thing for her weight. Eleven months later, she is still at a 12.8 BMI. The nutritionist's review of my food diaries say that she is getting more than enough calories and fat to be gaining weight.

This whole year has been crazy trying to figure out what is going on. We met with a pulmonologist last Apr who said K does not have CF, then sent us to met with the head of the CF Clinic. He said she <i>does</i> have CF (borderline sweat test and one mutation) based on the symptoms. He sent us to yet another pulmonolgist for all of her followup -- and he said she does <i>not</i> have CF and then he called into question the entire PI component. If she had PI, she should have started gaining weight as soon as she started medication. And that has left me totally confused.

I get that K's symptoms are all over the place and it's hard to figure out a diagnosis. But I was under the impression that the PI piece was determined with actual numbers from the fecal-fat test. Is that open to interpretation? I mean, I know there will be some flexiblity on determining the dosage of enymzes, but I thought the condition itself was determined on a fairly set standard. Is it possible to look at the results and think hmm, maybe it's PI, maybe it's something else? I'm so totally confused right now.

At our last appointment, her gastro doc said it was time to do an endoscopy to see if maybe she ALSO has celiac -- but he presented it as that diagnosis would be in addition to her PI status.

We just completed another fecal-fat test last weekend (UGH!!!!), this time on enzymes to see if she's still malabsorbing. We have an appointment with her gastro doc next week and I'm a total dunce about all of this. What questions should I be asking? Can whatever numbers from the fecal-fat test actually point to a different problem altogether?

 

[stringbean]

Is it possible to mistake pancreatic insufficiency for any other condition? We did the 72 hour fecal fat test last February and my daughter (7 yr old at the time) was diagnosed as PI and she immediately started taking enzymes. She had an AMAZING transformation once she started on those pills -- all of her frantic behavior disappeared. It may have improved her behavior, but unfortunately it hasn't done a thing for her weight. Eleven months later, she is still at a 12.8 BMI. The nutritionist's review of my food diaries say that she is getting more than enough calories and fat to be gaining weight.

This whole year has been crazy trying to figure out what is going on. We met with a pulmonologist last Apr who said K does not have CF, then sent us to met with the head of the CF Clinic. He said she <i>does</i> have CF (borderline sweat test and one mutation) based on the symptoms. He sent us to yet another pulmonolgist for all of her followup -- and he said she does <i>not</i> have CF and then he called into question the entire PI component. If she had PI, she should have started gaining weight as soon as she started medication. And that has left me totally confused.

I get that K's symptoms are all over the place and it's hard to figure out a diagnosis. But I was under the impression that the PI piece was determined with actual numbers from the fecal-fat test. Is that open to interpretation? I mean, I know there will be some flexiblity on determining the dosage of enymzes, but I thought the condition itself was determined on a fairly set standard. Is it possible to look at the results and think hmm, maybe it's PI, maybe it's something else? I'm so totally confused right now.

At our last appointment, her gastro doc said it was time to do an endoscopy to see if maybe she ALSO has celiac -- but he presented it as that diagnosis would be in addition to her PI status.

We just completed another fecal-fat test last weekend (UGH!!!!), this time on enzymes to see if she's still malabsorbing. We have an appointment with her gastro doc next week and I'm a total dunce about all of this. What questions should I be asking? Can whatever numbers from the fecal-fat test actually point to a different problem altogether?

 

[stringbean]

Is it possible to mistake pancreatic insufficiency for any other condition? We did the 72 hour fecal fat test last February and my daughter (7 yr old at the time) was diagnosed as PI and she immediately started taking enzymes. She had an AMAZING transformation once she started on those pills -- all of her frantic behavior disappeared. It may have improved her behavior, but unfortunately it hasn't done a thing for her weight. Eleven months later, she is still at a 12.8 BMI. The nutritionist's review of my food diaries say that she is getting more than enough calories and fat to be gaining weight.

This whole year has been crazy trying to figure out what is going on. We met with a pulmonologist last Apr who said K does not have CF, then sent us to met with the head of the CF Clinic. He said she <i>does</i> have CF (borderline sweat test and one mutation) based on the symptoms. He sent us to yet another pulmonolgist for all of her followup -- and he said she does <i>not</i> have CF and then he called into question the entire PI component. If she had PI, she should have started gaining weight as soon as she started medication. And that has left me totally confused.

I get that K's symptoms are all over the place and it's hard to figure out a diagnosis. But I was under the impression that the PI piece was determined with actual numbers from the fecal-fat test. Is that open to interpretation? I mean, I know there will be some flexiblity on determining the dosage of enymzes, but I thought the condition itself was determined on a fairly set standard. Is it possible to look at the results and think hmm, maybe it's PI, maybe it's something else? I'm so totally confused right now.

At our last appointment, her gastro doc said it was time to do an endoscopy to see if maybe she ALSO has celiac -- but he presented it as that diagnosis would be in addition to her PI status.

We just completed another fecal-fat test last weekend (UGH!!!!), this time on enzymes to see if she's still malabsorbing. We have an appointment with her gastro doc next week and I'm a total dunce about all of this. What questions should I be asking? Can whatever numbers from the fecal-fat test actually point to a different problem altogether?

 

[stringbean]

Is it possible to mistake pancreatic insufficiency for any other condition? We did the 72 hour fecal fat test last February and my daughter (7 yr old at the time) was diagnosed as PI and she immediately started taking enzymes. She had an AMAZING transformation once she started on those pills -- all of her frantic behavior disappeared. It may have improved her behavior, but unfortunately it hasn't done a thing for her weight. Eleven months later, she is still at a 12.8 BMI. The nutritionist's review of my food diaries say that she is getting more than enough calories and fat to be gaining weight.

This whole year has been crazy trying to figure out what is going on. We met with a pulmonologist last Apr who said K does not have CF, then sent us to met with the head of the CF Clinic. He said she <i>does</i> have CF (borderline sweat test and one mutation) based on the symptoms. He sent us to yet another pulmonolgist for all of her followup -- and he said she does <i>not</i> have CF and then he called into question the entire PI component. If she had PI, she should have started gaining weight as soon as she started medication. And that has left me totally confused.

I get that K's symptoms are all over the place and it's hard to figure out a diagnosis. But I was under the impression that the PI piece was determined with actual numbers from the fecal-fat test. Is that open to interpretation? I mean, I know there will be some flexiblity on determining the dosage of enymzes, but I thought the condition itself was determined on a fairly set standard. Is it possible to look at the results and think hmm, maybe it's PI, maybe it's something else? I'm so totally confused right now.

At our last appointment, her gastro doc said it was time to do an endoscopy to see if maybe she ALSO has celiac -- but he presented it as that diagnosis would be in addition to her PI status.

We just completed another fecal-fat test last weekend (UGH!!!!), this time on enzymes to see if she's still malabsorbing. We have an appointment with her gastro doc next week and I'm a total dunce about all of this. What questions should I be asking? Can whatever numbers from the fecal-fat test actually point to a different problem altogether?

 

[stringbean]

Is it possible to mistake pancreatic insufficiency for any other condition? We did the 72 hour fecal fat test last February and my daughter (7 yr old at the time) was diagnosed as PI and she immediately started taking enzymes. She had an AMAZING transformation once she started on those pills -- all of her frantic behavior disappeared. It may have improved her behavior, but unfortunately it hasn't done a thing for her weight. Eleven months later, she is still at a 12.8 BMI. The nutritionist's review of my food diaries say that she is getting more than enough calories and fat to be gaining weight.
<br />
<br />This whole year has been crazy trying to figure out what is going on. We met with a pulmonologist last Apr who said K does not have CF, then sent us to met with the head of the CF Clinic. He said she <i>does</i> have CF (borderline sweat test and one mutation) based on the symptoms. He sent us to yet another pulmonolgist for all of her followup -- and he said she does <i>not</i> have CF and then he called into question the entire PI component. If she had PI, she should have started gaining weight as soon as she started medication. And that has left me totally confused.
<br />
<br />I get that K's symptoms are all over the place and it's hard to figure out a diagnosis. But I was under the impression that the PI piece was determined with actual numbers from the fecal-fat test. Is that open to interpretation? I mean, I know there will be some flexiblity on determining the dosage of enymzes, but I thought the condition itself was determined on a fairly set standard. Is it possible to look at the results and think hmm, maybe it's PI, maybe it's something else? I'm so totally confused right now.
<br />
<br />At our last appointment, her gastro doc said it was time to do an endoscopy to see if maybe she ALSO has celiac -- but he presented it as that diagnosis would be in addition to her PI status.
<br />
<br />We just completed another fecal-fat test last weekend (UGH!!!!), this time on enzymes to see if she's still malabsorbing. We have an appointment with her gastro doc next week and I'm a total dunce about all of this. What questions should I be asking? Can whatever numbers from the fecal-fat test actually point to a different problem altogether?

 

[dlo2977]

Did they do a fecal elastase or just % fat?? They can't diagnose PI based on the % fat only...

 

[dlo2977]

Did they do a fecal elastase or just % fat?? They can't diagnose PI based on the % fat only...

 

[dlo2977]

Did they do a fecal elastase or just % fat?? They can't diagnose PI based on the % fat only...

 

[dlo2977]

Did they do a fecal elastase or just % fat?? They can't diagnose PI based on the % fat only...

 

[dlo2977]

Did they do a fecal elastase or just % fat?? They can't diagnose PI based on the % fat only...

 

[PlumPerfect]

Also certain medications don't always work on everyone and need to change brands sometimes.. also there are alot of other issues that could take place along side CF such as celiacs disease. Also allergies or other things may be making things troublesome so you need to test and factor that stuff in to. It is actually more common to have other issues on top of cf. did they only do a sweat test or did you do a blood test for cf diagnosis? If not it may be worth doing that too.

 

[PlumPerfect]

Also certain medications don't always work on everyone and need to change brands sometimes.. also there are alot of other issues that could take place along side CF such as celiacs disease. Also allergies or other things may be making things troublesome so you need to test and factor that stuff in to. It is actually more common to have other issues on top of cf. did they only do a sweat test or did you do a blood test for cf diagnosis? If not it may be worth doing that too.

 

[PlumPerfect]

Also certain medications don't always work on everyone and need to change brands sometimes.. also there are alot of other issues that could take place along side CF such as celiacs disease. Also allergies or other things may be making things troublesome so you need to test and factor that stuff in to. It is actually more common to have other issues on top of cf. did they only do a sweat test or did you do a blood test for cf diagnosis? If not it may be worth doing that too.

 

[PlumPerfect]

Also certain medications don't always work on everyone and need to change brands sometimes.. also there are alot of other issues that could take place along side CF such as celiacs disease. Also allergies or other things may be making things troublesome so you need to test and factor that stuff in to. It is actually more common to have other issues on top of cf. did they only do a sweat test or did you do a blood test for cf diagnosis? If not it may be worth doing that too.

 

[PlumPerfect]

Also certain medications don't always work on everyone and need to change brands sometimes.. also there are alot of other issues that could take place along side CF such as celiacs disease. Also allergies or other things may be making things troublesome so you need to test and factor that stuff in to. It is actually more common to have other issues on top of cf. did they only do a sweat test or did you do a blood test for cf diagnosis? If not it may be worth doing that too.

 

[stringbean]

We did a simple stool test a year ago which showed malabsorption and that's when the doctor ordered the sweat test (two borderline results), the full panel Ambry (one mutation) and the 72 hour fecal-fat test which did test for elastase. So that's why I'm confused. I really thought this 72-hour test would provide numbers that <i>clearly</i> says it is (or is not) PI. I didn't think it was open to interpretation.

My daughter had been losing weight before starting the enzymes, so at a minimum, she's been holding steady. But of course, her doctor would like to see her start gaining. He did another stool sample test in August and her numbers "looked good". We've done several food allergy and celiac blood tests, but the doctor said those are notoriously unreliable so he will periodically repeat them. He's been extremely hesitant to do the endoscopy because she just doesn't take medications well at all. He doesn't like the idea of putting her under anesthesia -- nor do I. But we're running out of any other viable answers. Maybe this latest fecal-fat test will tell him something new...

Anyway, I thought the diagnosis of PI was the only clear part of what was going on. I was just surprised when the pulmonologist questioned it. And I no longer even know what kind of information to give our gastroenterologist to help him figure out why she's unable to gain any weight.

Thanks for the responses!

 

[stringbean]

We did a simple stool test a year ago which showed malabsorption and that's when the doctor ordered the sweat test (two borderline results), the full panel Ambry (one mutation) and the 72 hour fecal-fat test which did test for elastase. So that's why I'm confused. I really thought this 72-hour test would provide numbers that <i>clearly</i> says it is (or is not) PI. I didn't think it was open to interpretation.

My daughter had been losing weight before starting the enzymes, so at a minimum, she's been holding steady. But of course, her doctor would like to see her start gaining. He did another stool sample test in August and her numbers "looked good". We've done several food allergy and celiac blood tests, but the doctor said those are notoriously unreliable so he will periodically repeat them. He's been extremely hesitant to do the endoscopy because she just doesn't take medications well at all. He doesn't like the idea of putting her under anesthesia -- nor do I. But we're running out of any other viable answers. Maybe this latest fecal-fat test will tell him something new...

Anyway, I thought the diagnosis of PI was the only clear part of what was going on. I was just surprised when the pulmonologist questioned it. And I no longer even know what kind of information to give our gastroenterologist to help him figure out why she's unable to gain any weight.

Thanks for the responses!

 

[stringbean]

We did a simple stool test a year ago which showed malabsorption and that's when the doctor ordered the sweat test (two borderline results), the full panel Ambry (one mutation) and the 72 hour fecal-fat test which did test for elastase. So that's why I'm confused. I really thought this 72-hour test would provide numbers that <i>clearly</i> says it is (or is not) PI. I didn't think it was open to interpretation.

My daughter had been losing weight before starting the enzymes, so at a minimum, she's been holding steady. But of course, her doctor would like to see her start gaining. He did another stool sample test in August and her numbers "looked good". We've done several food allergy and celiac blood tests, but the doctor said those are notoriously unreliable so he will periodically repeat them. He's been extremely hesitant to do the endoscopy because she just doesn't take medications well at all. He doesn't like the idea of putting her under anesthesia -- nor do I. But we're running out of any other viable answers. Maybe this latest fecal-fat test will tell him something new...

Anyway, I thought the diagnosis of PI was the only clear part of what was going on. I was just surprised when the pulmonologist questioned it. And I no longer even know what kind of information to give our gastroenterologist to help him figure out why she's unable to gain any weight.

Thanks for the responses!

 

[stringbean]

We did a simple stool test a year ago which showed malabsorption and that's when the doctor ordered the sweat test (two borderline results), the full panel Ambry (one mutation) and the 72 hour fecal-fat test which did test for elastase. So that's why I'm confused. I really thought this 72-hour test would provide numbers that <i>clearly</i> says it is (or is not) PI. I didn't think it was open to interpretation.

My daughter had been losing weight before starting the enzymes, so at a minimum, she's been holding steady. But of course, her doctor would like to see her start gaining. He did another stool sample test in August and her numbers "looked good". We've done several food allergy and celiac blood tests, but the doctor said those are notoriously unreliable so he will periodically repeat them. He's been extremely hesitant to do the endoscopy because she just doesn't take medications well at all. He doesn't like the idea of putting her under anesthesia -- nor do I. But we're running out of any other viable answers. Maybe this latest fecal-fat test will tell him something new...

Anyway, I thought the diagnosis of PI was the only clear part of what was going on. I was just surprised when the pulmonologist questioned it. And I no longer even know what kind of information to give our gastroenterologist to help him figure out why she's unable to gain any weight.

Thanks for the responses!

 

[stringbean]

We did a simple stool test a year ago which showed malabsorption and that's when the doctor ordered the sweat test (two borderline results), the full panel Ambry (one mutation) and the 72 hour fecal-fat test which did test for elastase. So that's why I'm confused. I really thought this 72-hour test would provide numbers that <i>clearly</i> says it is (or is not) PI. I didn't think it was open to interpretation.
<br />
<br />My daughter had been losing weight before starting the enzymes, so at a minimum, she's been holding steady. But of course, her doctor would like to see her start gaining. He did another stool sample test in August and her numbers "looked good". We've done several food allergy and celiac blood tests, but the doctor said those are notoriously unreliable so he will periodically repeat them. He's been extremely hesitant to do the endoscopy because she just doesn't take medications well at all. He doesn't like the idea of putting her under anesthesia -- nor do I. But we're running out of any other viable answers. Maybe this latest fecal-fat test will tell him something new...
<br />
<br />Anyway, I thought the diagnosis of PI was the only clear part of what was going on. I was just surprised when the pulmonologist questioned it. And I no longer even know what kind of information to give our gastroenterologist to help him figure out why she's unable to gain any weight.
<br />
<br />Thanks for the responses!