If the lung damage you are referring to is BPD, it can still show up on x-rays for a few more years. The damage is normally healed by the time they go to school though. The key would be getting someone to tell you if it is CF related lung damage or BDP related lung damage they are looking at on the x-rays - I have been told it looks similar on an x-ray. Regardless, you should get CF and Celiac totally ruled out and then keep going until you find out what her is causing her problems.
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Testing questions
- Thread starter Munkeesmama
- Start date
If the lung damage you are referring to is BPD, it can still show up on x-rays for a few more years. The damage is normally healed by the time they go to school though. The key would be getting someone to tell you if it is CF related lung damage or BDP related lung damage they are looking at on the x-rays - I have been told it looks similar on an x-ray. Regardless, you should get CF and Celiac totally ruled out and then keep going until you find out what her is causing her problems.
If the lung damage you are referring to is BPD, it can still show up on x-rays for a few more years. The damage is normally healed by the time they go to school though. The key would be getting someone to tell you if it is CF related lung damage or BDP related lung damage they are looking at on the x-rays - I have been told it looks similar on an x-ray. Regardless, you should get CF and Celiac totally ruled out and then keep going until you find out what her is causing her problems.
If the lung damage you are referring to is BPD, it can still show up on x-rays for a few more years. The damage is normally healed by the time they go to school though. The key would be getting someone to tell you if it is CF related lung damage or BDP related lung damage they are looking at on the x-rays - I have been told it looks similar on an x-ray. Regardless, you should get CF and Celiac totally ruled out and then keep going until you find out what her is causing her problems.
If the lung damage you are referring to is BPD, it can still show up on x-rays for a few more years. The damage is normally healed by the time they go to school though. The key would be getting someone to tell you if it is CF related lung damage or BDP related lung damage they are looking at on the x-rays - I have been told it looks similar on an x-ray. Regardless, you should get CF and Celiac totally ruled out and then keep going until you find out what her is causing her problems.
I would definitely push for full testing... do the math..by checking for 36 mutations out of 1561...they looked for .02% of the possible genes... not a very accurate test if you ask me !
Keep pushing... there is no such thing as "common CF mutations" it very likely could be two other genes that were not part of the 36 they tested for.
Now, about the celiac blood test being normal and wanting to do the biopsy... I have to admit there is some logic to that (although it does sound more like CF to me) but I have been told by a GI doc that the blood test for celiac is only 85% accurate, but the biopsy is 100% so there you go....you do have a 15% chance of not getting a positive result with the blood test.
Best wishes, please keep us posted.
Keep pushing... there is no such thing as "common CF mutations" it very likely could be two other genes that were not part of the 36 they tested for.
Now, about the celiac blood test being normal and wanting to do the biopsy... I have to admit there is some logic to that (although it does sound more like CF to me) but I have been told by a GI doc that the blood test for celiac is only 85% accurate, but the biopsy is 100% so there you go....you do have a 15% chance of not getting a positive result with the blood test.
Best wishes, please keep us posted.
I would definitely push for full testing... do the math..by checking for 36 mutations out of 1561...they looked for .02% of the possible genes... not a very accurate test if you ask me !
Keep pushing... there is no such thing as "common CF mutations" it very likely could be two other genes that were not part of the 36 they tested for.
Now, about the celiac blood test being normal and wanting to do the biopsy... I have to admit there is some logic to that (although it does sound more like CF to me) but I have been told by a GI doc that the blood test for celiac is only 85% accurate, but the biopsy is 100% so there you go....you do have a 15% chance of not getting a positive result with the blood test.
Best wishes, please keep us posted.
Keep pushing... there is no such thing as "common CF mutations" it very likely could be two other genes that were not part of the 36 they tested for.
Now, about the celiac blood test being normal and wanting to do the biopsy... I have to admit there is some logic to that (although it does sound more like CF to me) but I have been told by a GI doc that the blood test for celiac is only 85% accurate, but the biopsy is 100% so there you go....you do have a 15% chance of not getting a positive result with the blood test.
Best wishes, please keep us posted.
I would definitely push for full testing... do the math..by checking for 36 mutations out of 1561...they looked for .02% of the possible genes... not a very accurate test if you ask me !
Keep pushing... there is no such thing as "common CF mutations" it very likely could be two other genes that were not part of the 36 they tested for.
Now, about the celiac blood test being normal and wanting to do the biopsy... I have to admit there is some logic to that (although it does sound more like CF to me) but I have been told by a GI doc that the blood test for celiac is only 85% accurate, but the biopsy is 100% so there you go....you do have a 15% chance of not getting a positive result with the blood test.
Best wishes, please keep us posted.
Keep pushing... there is no such thing as "common CF mutations" it very likely could be two other genes that were not part of the 36 they tested for.
Now, about the celiac blood test being normal and wanting to do the biopsy... I have to admit there is some logic to that (although it does sound more like CF to me) but I have been told by a GI doc that the blood test for celiac is only 85% accurate, but the biopsy is 100% so there you go....you do have a 15% chance of not getting a positive result with the blood test.
Best wishes, please keep us posted.
I would definitely push for full testing... do the math..by checking for 36 mutations out of 1561...they looked for .02% of the possible genes... not a very accurate test if you ask me !
Keep pushing... there is no such thing as "common CF mutations" it very likely could be two other genes that were not part of the 36 they tested for.
Now, about the celiac blood test being normal and wanting to do the biopsy... I have to admit there is some logic to that (although it does sound more like CF to me) but I have been told by a GI doc that the blood test for celiac is only 85% accurate, but the biopsy is 100% so there you go....you do have a 15% chance of not getting a positive result with the blood test.
Best wishes, please keep us posted.
Keep pushing... there is no such thing as "common CF mutations" it very likely could be two other genes that were not part of the 36 they tested for.
Now, about the celiac blood test being normal and wanting to do the biopsy... I have to admit there is some logic to that (although it does sound more like CF to me) but I have been told by a GI doc that the blood test for celiac is only 85% accurate, but the biopsy is 100% so there you go....you do have a 15% chance of not getting a positive result with the blood test.
Best wishes, please keep us posted.
I would definitely push for full testing... do the math..by checking for 36 mutations out of 1561...they looked for .02% of the possible genes... not a very accurate test if you ask me !
<br />
<br />Keep pushing... there is no such thing as "common CF mutations" it very likely could be two other genes that were not part of the 36 they tested for.
<br />
<br />Now, about the celiac blood test being normal and wanting to do the biopsy... I have to admit there is some logic to that (although it does sound more like CF to me) but I have been told by a GI doc that the blood test for celiac is only 85% accurate, but the biopsy is 100% so there you go....you do have a 15% chance of not getting a positive result with the blood test.
<br />
<br />Best wishes, please keep us posted.
<br />
<br />Keep pushing... there is no such thing as "common CF mutations" it very likely could be two other genes that were not part of the 36 they tested for.
<br />
<br />Now, about the celiac blood test being normal and wanting to do the biopsy... I have to admit there is some logic to that (although it does sound more like CF to me) but I have been told by a GI doc that the blood test for celiac is only 85% accurate, but the biopsy is 100% so there you go....you do have a 15% chance of not getting a positive result with the blood test.
<br />
<br />Best wishes, please keep us posted.