CF or No CF? desperate for advice.. anyone?!

[auntcob]

We are going through a similar thing and I was told that malnutrition could lead to an elevated sweat test score. My son has had gastro problems his whole life but have been especially bad since August with 8+ bouts of diarrhea a day. He has lost 15 lbs since August. Also asthmatic and other assorted upper respiratory problems.

I agree that the best thing you can do is get the genetic sequencing.

 

[auntcob]

We are going through a similar thing and I was told that malnutrition could lead to an elevated sweat test score. My son has had gastro problems his whole life but have been especially bad since August with 8+ bouts of diarrhea a day. He has lost 15 lbs since August. Also asthmatic and other assorted upper respiratory problems.

I agree that the best thing you can do is get the genetic sequencing.

 

[auntcob]

We are going through a similar thing and I was told that malnutrition could lead to an elevated sweat test score. My son has had gastro problems his whole life but have been especially bad since August with 8+ bouts of diarrhea a day. He has lost 15 lbs since August. Also asthmatic and other assorted upper respiratory problems.

I agree that the best thing you can do is get the genetic sequencing.

 

[auntcob]

We are going through a similar thing and I was told that malnutrition could lead to an elevated sweat test score. My son has had gastro problems his whole life but have been especially bad since August with 8+ bouts of diarrhea a day. He has lost 15 lbs since August. Also asthmatic and other assorted upper respiratory problems.

I agree that the best thing you can do is get the genetic sequencing.

 

[auntcob]

We are going through a similar thing and I was told that malnutrition could lead to an elevated sweat test score. My son has had gastro problems his whole life but have been especially bad since August with 8+ bouts of diarrhea a day. He has lost 15 lbs since August. Also asthmatic and other assorted upper respiratory problems.
<br />
<br />I agree that the best thing you can do is get the genetic sequencing.

 

[auntcob]

I just tried to post but I don't think it went through.

Anyway, my son recently had a borderline sweat test and we did the full genetic screening. I did a lot of research about the borderline sweat test, trying to figure out what the likelihood it was that he had Cf. Our doctor said that the borderline test could be the result of malnourishment. He has lost 15 lbs since August because of GI problems.

We did the genetic testing and he came back with two benign mutations--which are a bit controversial. We are getting a second opinion. I think the full genetic sequencing is the only way to go to ease your mind. Good luck.

 

[auntcob]

I just tried to post but I don't think it went through.

Anyway, my son recently had a borderline sweat test and we did the full genetic screening. I did a lot of research about the borderline sweat test, trying to figure out what the likelihood it was that he had Cf. Our doctor said that the borderline test could be the result of malnourishment. He has lost 15 lbs since August because of GI problems.

We did the genetic testing and he came back with two benign mutations--which are a bit controversial. We are getting a second opinion. I think the full genetic sequencing is the only way to go to ease your mind. Good luck.

 

[auntcob]

I just tried to post but I don't think it went through.

Anyway, my son recently had a borderline sweat test and we did the full genetic screening. I did a lot of research about the borderline sweat test, trying to figure out what the likelihood it was that he had Cf. Our doctor said that the borderline test could be the result of malnourishment. He has lost 15 lbs since August because of GI problems.

We did the genetic testing and he came back with two benign mutations--which are a bit controversial. We are getting a second opinion. I think the full genetic sequencing is the only way to go to ease your mind. Good luck.

 

[auntcob]

I just tried to post but I don't think it went through.

Anyway, my son recently had a borderline sweat test and we did the full genetic screening. I did a lot of research about the borderline sweat test, trying to figure out what the likelihood it was that he had Cf. Our doctor said that the borderline test could be the result of malnourishment. He has lost 15 lbs since August because of GI problems.

We did the genetic testing and he came back with two benign mutations--which are a bit controversial. We are getting a second opinion. I think the full genetic sequencing is the only way to go to ease your mind. Good luck.

 

[auntcob]

I just tried to post but I don't think it went through.
<br />
<br />Anyway, my son recently had a borderline sweat test and we did the full genetic screening. I did a lot of research about the borderline sweat test, trying to figure out what the likelihood it was that he had Cf. Our doctor said that the borderline test could be the result of malnourishment. He has lost 15 lbs since August because of GI problems.
<br />
<br />We did the genetic testing and he came back with two benign mutations--which are a bit controversial. We are getting a second opinion. I think the full genetic sequencing is the only way to go to ease your mind. Good luck.

 

[makahfili]

NEW UPDATES!!! ADVICE!!!!??

Ok, so We just completed her colonoscopy and upper endoscopy. Waiting on the biopsies from that and on CF gene testing results. The wait is ridiculous. The lady who did my daughter's surgery said that CF does not cause elevated fecal Calprotectin levels and would not cause intestinal inflammation. I do not believe this to be true after I have done my own research on the subject. Mya's Calprotectin levels were three times the normal values at 164 mcg/g. Normal levels being <51 mcg/g. Also her fecal fat test came back abnormal suggesting fat malabsorbtion. Yet her pancreatic elastase test came back normal. When I did research on pancreatitis it said that in mild forms the pancreatic elastase is not very sensitive and/or accurate. What testing is recommended? She has officially been diagnosed based on 2 borderline readings, yet confirmation is left to the genetic testing. I know that CF causes GI issues but it seems as though they are overlooked. Why would the surgeon claim that CF does not cause elevated Calprotectin levels? I need some advice.. Anyone????!!!!<img src="i/expressions/face-icon-small-confused.gif" border="0"><img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[makahfili]

NEW UPDATES!!! ADVICE!!!!??

Ok, so We just completed her colonoscopy and upper endoscopy. Waiting on the biopsies from that and on CF gene testing results. The wait is ridiculous. The lady who did my daughter's surgery said that CF does not cause elevated fecal Calprotectin levels and would not cause intestinal inflammation. I do not believe this to be true after I have done my own research on the subject. Mya's Calprotectin levels were three times the normal values at 164 mcg/g. Normal levels being <51 mcg/g. Also her fecal fat test came back abnormal suggesting fat malabsorbtion. Yet her pancreatic elastase test came back normal. When I did research on pancreatitis it said that in mild forms the pancreatic elastase is not very sensitive and/or accurate. What testing is recommended? She has officially been diagnosed based on 2 borderline readings, yet confirmation is left to the genetic testing. I know that CF causes GI issues but it seems as though they are overlooked. Why would the surgeon claim that CF does not cause elevated Calprotectin levels? I need some advice.. Anyone????!!!!<img src="i/expressions/face-icon-small-confused.gif" border="0"><img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[makahfili]

NEW UPDATES!!! ADVICE!!!!??

Ok, so We just completed her colonoscopy and upper endoscopy. Waiting on the biopsies from that and on CF gene testing results. The wait is ridiculous. The lady who did my daughter's surgery said that CF does not cause elevated fecal Calprotectin levels and would not cause intestinal inflammation. I do not believe this to be true after I have done my own research on the subject. Mya's Calprotectin levels were three times the normal values at 164 mcg/g. Normal levels being <51 mcg/g. Also her fecal fat test came back abnormal suggesting fat malabsorbtion. Yet her pancreatic elastase test came back normal. When I did research on pancreatitis it said that in mild forms the pancreatic elastase is not very sensitive and/or accurate. What testing is recommended? She has officially been diagnosed based on 2 borderline readings, yet confirmation is left to the genetic testing. I know that CF causes GI issues but it seems as though they are overlooked. Why would the surgeon claim that CF does not cause elevated Calprotectin levels? I need some advice.. Anyone????!!!!<img src="i/expressions/face-icon-small-confused.gif" border="0"><img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[makahfili]

NEW UPDATES!!! ADVICE!!!!??

Ok, so We just completed her colonoscopy and upper endoscopy. Waiting on the biopsies from that and on CF gene testing results. The wait is ridiculous. The lady who did my daughter's surgery said that CF does not cause elevated fecal Calprotectin levels and would not cause intestinal inflammation. I do not believe this to be true after I have done my own research on the subject. Mya's Calprotectin levels were three times the normal values at 164 mcg/g. Normal levels being <51 mcg/g. Also her fecal fat test came back abnormal suggesting fat malabsorbtion. Yet her pancreatic elastase test came back normal. When I did research on pancreatitis it said that in mild forms the pancreatic elastase is not very sensitive and/or accurate. What testing is recommended? She has officially been diagnosed based on 2 borderline readings, yet confirmation is left to the genetic testing. I know that CF causes GI issues but it seems as though they are overlooked. Why would the surgeon claim that CF does not cause elevated Calprotectin levels? I need some advice.. Anyone????!!!!<img src="i/expressions/face-icon-small-confused.gif" border="0"><img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[makahfili]

NEW UPDATES!!! ADVICE!!!!??

Ok, so We just completed her colonoscopy and upper endoscopy. Waiting on the biopsies from that and on CF gene testing results. The wait is ridiculous. The lady who did my daughter's surgery said that CF does not cause elevated fecal Calprotectin levels and would not cause intestinal inflammation. I do not believe this to be true after I have done my own research on the subject. Mya's Calprotectin levels were three times the normal values at 164 mcg/g. Normal levels being <51 mcg/g. Also her fecal fat test came back abnormal suggesting fat malabsorbtion. Yet her pancreatic elastase test came back normal. When I did research on pancreatitis it said that in mild forms the pancreatic elastase is not very sensitive and/or accurate. What testing is recommended? She has officially been diagnosed based on 2 borderline readings, yet confirmation is left to the genetic testing. I know that CF causes GI issues but it seems as though they are overlooked. Why would the surgeon claim that CF does not cause elevated Calprotectin levels? I need some advice.. Anyone????!!!!<img src="i/expressions/face-icon-small-confused.gif" border="0"><img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[Ratatosk]

NEW UPDATES!!! ADVICE!!!!??

I don't know about the Calprotectin other than I just googled it and it appears there is a correlation or studies relating to levels and CF.

Did the mention at all any meconium staining in her intestinal tract? When DS had surgery for a bowel obstruction last summer, the surgeon and anethesiologist both noticed a LOT of meconium staining through out. It was as if he'd never ever had digestive enzymes despite having been on them since infancy. In his case a mechanical obstruction (adhesions) prevented/slowed down the enzymes from getting to where they were supposed to go, so it created an additional blockage.

IMO, the surgeon probably isn't the one to ask these questions, but a GI or CF specialist. Surgeons are more versed in the mechanical aspects rather than the hows and whys...

 

[Ratatosk]

NEW UPDATES!!! ADVICE!!!!??

I don't know about the Calprotectin other than I just googled it and it appears there is a correlation or studies relating to levels and CF.

Did the mention at all any meconium staining in her intestinal tract? When DS had surgery for a bowel obstruction last summer, the surgeon and anethesiologist both noticed a LOT of meconium staining through out. It was as if he'd never ever had digestive enzymes despite having been on them since infancy. In his case a mechanical obstruction (adhesions) prevented/slowed down the enzymes from getting to where they were supposed to go, so it created an additional blockage.

IMO, the surgeon probably isn't the one to ask these questions, but a GI or CF specialist. Surgeons are more versed in the mechanical aspects rather than the hows and whys...

 

[Ratatosk]

NEW UPDATES!!! ADVICE!!!!??

I don't know about the Calprotectin other than I just googled it and it appears there is a correlation or studies relating to levels and CF.

Did the mention at all any meconium staining in her intestinal tract? When DS had surgery for a bowel obstruction last summer, the surgeon and anethesiologist both noticed a LOT of meconium staining through out. It was as if he'd never ever had digestive enzymes despite having been on them since infancy. In his case a mechanical obstruction (adhesions) prevented/slowed down the enzymes from getting to where they were supposed to go, so it created an additional blockage.

IMO, the surgeon probably isn't the one to ask these questions, but a GI or CF specialist. Surgeons are more versed in the mechanical aspects rather than the hows and whys...

 

[Ratatosk]

NEW UPDATES!!! ADVICE!!!!??

I don't know about the Calprotectin other than I just googled it and it appears there is a correlation or studies relating to levels and CF.

Did the mention at all any meconium staining in her intestinal tract? When DS had surgery for a bowel obstruction last summer, the surgeon and anethesiologist both noticed a LOT of meconium staining through out. It was as if he'd never ever had digestive enzymes despite having been on them since infancy. In his case a mechanical obstruction (adhesions) prevented/slowed down the enzymes from getting to where they were supposed to go, so it created an additional blockage.

IMO, the surgeon probably isn't the one to ask these questions, but a GI or CF specialist. Surgeons are more versed in the mechanical aspects rather than the hows and whys...

 

[Ratatosk]

NEW UPDATES!!! ADVICE!!!!??

I don't know about the Calprotectin other than I just googled it and it appears there is a correlation or studies relating to levels and CF.
<br />
<br />Did the mention at all any meconium staining in her intestinal tract? When DS had surgery for a bowel obstruction last summer, the surgeon and anethesiologist both noticed a LOT of meconium staining through out. It was as if he'd never ever had digestive enzymes despite having been on them since infancy. In his case a mechanical obstruction (adhesions) prevented/slowed down the enzymes from getting to where they were supposed to go, so it created an additional blockage.
<br />
<br />IMO, the surgeon probably isn't the one to ask these questions, but a GI or CF specialist. Surgeons are more versed in the mechanical aspects rather than the hows and whys...