colon tissue test used to dx CF, maybe next year

[Mistyjo]

<P>The cf specialist called today and said that he is diagnosing my daughter with cystic fibrosis related metabolic syndrome based on her colon tissue test results and borerline sweat test.  He said if she develops ANY other symptoms of CF he will NOT hesitate to diagnose her with CF.  I asked him regarding insurance coverage for treatment should symptoms arise with the dx of CRMS and he said her dx would no longer be CRMS but CF if she starts having symptoms.  She will be his patient for many years.</P>
<P>Now something everyone might be interested in: colon tissue test for diagnosing CF</P>
<P>He said he brought the testing to cincy childrens and at the moment there are only 4 places in the U.S. that do this test.  He was trained in Europe on how to do the test.  This test will be used as a diagnostic test for CF probably at the first of next year, he said.  It is used as a diagnostic test for CF over in Europe.  </P>
<P> </P>
<P>He said that they basically apply something to the colon tissue to see if it responds.  In a normal colon, there is a response, but in a child with CF there is no response.  Jasey had no response.  He tested it on two different days and tested the equipment to make sure it was accurate.  I could be wrong, this was my understanding of how the test is performed.</P>

 

[Mistyjo]

<P>The cf specialist called today and said that he is diagnosing my daughter with cystic fibrosis related metabolic syndrome based on her colon tissue test results and borerline sweat test. He said if she developsANY other symptoms of CF he will NOT hesitate to diagnose her with CF. I asked him regarding insurance coverage for treatment should symptoms arise with the dx of CRMS and he said her dx would no longer be CRMS but CF if she starts having symptoms. She will be his patient for many years.</P>
<P>Now something everyone might be interested in: colon tissue test for diagnosing CF</P>
<P>He said he brought the testing to cincy childrens and at the moment there are only 4 places in theU.S. that do this test. He was trained in Europe on how to do the test. This test will be used as a diagnostic test for CF probably at the first of next year, he said. It is used as a diagnostic test for CF over in Europe. </P>
<P></P>
<P>He said that theybasically apply something to the colon tissue to see if it responds. In a normal colon, there is a response, but in a child with CF there is no response. Jasey had no response. He tested it on two different days and tested the equipment to make sure it was accurate. I could be wrong, this was my understanding of how the test is performed.</P>

 

[Mistyjo]

<P><BR>The cf specialist called today and said that he is diagnosing my daughter with cystic fibrosis related metabolic syndrome based on her colon tissue test results and borerline sweat test. He said if she developsANY other symptoms of CF he will NOT hesitate to diagnose her with CF. I asked him regarding insurance coverage for treatment should symptoms arise with the dx of CRMS and he said her dx would no longer be CRMS but CF if she starts having symptoms. She will be his patient for many years.</P>
<P>Now something everyone might be interested in: colon tissue test for diagnosing CF</P>
<P>He said he brought the testing to cincy childrens and at the moment there are only 4 places in theU.S. that do this test. He was trained in Europe on how to do the test. This test will be used as a diagnostic test for CF probably at the first of next year, he said. It is used as a diagnostic test for CF over in Europe. </P>
<P></P>
<P>He said that theybasically apply something to the colon tissue to see if it responds. In a normal colon, there is a response, but in a child with CF there is no response. Jasey had no response. He tested it on two different days and tested the equipment to make sure it was accurate. I could be wrong, this was my understanding of how the test is performed.</P>

 

[LouLou]

Thanks for the explanation Misty. I asked a question about this in your other post but I see this now. Very interesting!

 

[LouLou]

Thanks for the explanation Misty. I asked a question about this in your other post but I see this now. Very interesting!

 

[LouLou]

Thanks for the explanation Misty. I asked a question about this in your other post but I see this now. Very interesting!

 

[hmw]

I can see this being of special benefit with those who may have strong digestive symptoms but who may still have normal/near normal respiratory function. For example, when sweat tests are inconclusive, a test one can turn to is the NPD- but without respiratory involvement I wonder if that is always 100% accurate- we were quite specifically told that this test could be just as 'borderline' as a sweat test. I really see a test involving the GI tract being of great benefit! Thanks for telling us more about this!

 

[hmw]

I can see this being of special benefit with those who may have strong digestive symptoms but who may still have normal/near normal respiratory function. For example, when sweat tests are inconclusive, a test one can turn to is the NPD- but without respiratory involvement I wonder if that is always 100% accurate- we were quite specifically told that this test could be just as 'borderline' as a sweat test. I really see a test involving the GI tract being of great benefit! Thanks for telling us more about this!

 

[hmw]

I can see this being of special benefit with those who may have strong digestive symptoms but who may still have normal/near normal respiratory function. For example, when sweat tests are inconclusive, a test one can turn to is the NPD- but without respiratory involvement I wonder if that is always 100% accurate- we were quite specifically told that this test could be just as 'borderline' as a sweat test. I really see a test involving the GI tract being of great benefit! Thanks for telling us more about this!