Guest guest Posted November 2, 2002 Report Share Posted November 2, 2002 In a message dated 11/2/2002 3:27:27 PM Central Standard Time, janathorn@... writes: > Hi Everyone... > > I have read mention on this list that CF is sometimes mistaken for Celiac > disease. Can someone elaborate on that for me? > > My daughter (23 months) is under investigation for CF - she had a sweat > test with a result of 64 - and she's also unable to tolerate gluten. > Although we haven't subjected to her to any of the biopsies because I don't > feel they're warranted, she can't tolerate gluten so we don't eat it, I'm > curious about the connection that's been drawn. > > Any information would be fantastic. Thank you so much in advance for your > help. No dount over the coming weeks I'll have many more questions! > > Hugs, > Jana > Madeline - 23 months - under investigation for CF Jana, Celiac stools look the same because they can not digest the gluten and they have the stomach aches too. Hope this helps. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2002 Report Share Posted November 2, 2002 Hi Everyone... I have read mention on this list that CF is sometimes mistaken for Celiac disease. Can someone elaborate on that for me? My daughter (23 months) is under investigation for CF - she had a sweat test with a result of 64 - and she's also unable to tolerate gluten. Although we haven't subjected to her to any of the biopsies because I don't feel they're warranted, she can't tolerate gluten so we don't eat it, I'm curious about the connection that's been drawn. Any information would be fantastic. Thank you so much in advance for your help. No dount over the coming weeks I'll have many more questions! Hugs, Jana Madeline - 23 months - under investigation for CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Help!!!! My girl has been in the hospital five times since Jan. this year. First two gastros said they suspected CF. Negative twice in sweat tests and for the 87 genetic mutations test. Then another doc today argues with me that despite the history of chronic pnuemonia and sinusitis and failure to thrive and congestive heart failure and diabetes and positive trypsin and negative fecal fat study (after placement on Pancrease) that she DOESN'T have CF and only has CELIAC DISEASE and that Down's Syndrome (which she has) isn't associated with CF (though I've read in numerous places that it IS assoicated with CF) has now ordered yet more tests to rule out CELIAC DISEASE and strongly oposed me requiring further CF testing thru AMBRY's comprehensive analysis and swore up and down I'll only get a negative result. Now I'm at odds with what to do and whether I should just wait for the CELIAC test results and leave the CF alone?? What should I do? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Help!!!! My girl has been in the hospital five times since Jan. this year. First two gastros said they suspected CF. Negative twice in sweat tests and for the 87 genetic mutations test. Then another doc today argues with me that despite the history of chronic pnuemonia and sinusitis and failure to thrive and congestive heart failure and diabetes and positive trypsin and negative fecal fat study (after placement on Pancrease) that she DOESN'T have CF and only has CELIAC DISEASE and that Down's Syndrome (which she has) isn't associated with CF (though I've read in numerous places that it IS assoicated with CF) has now ordered yet more tests to rule out CELIAC DISEASE and strongly oposed me requiring further CF testing thru AMBRY's comprehensive analysis and swore up and down I'll only get a negative result. Now I'm at odds with what to do and whether I should just wait for the CELIAC test results and leave the CF alone?? What should I do? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2002 Report Share Posted November 6, 2002 Help!!!! My girl has been in the hospital five times since Jan. this year. First two gastros said they suspected CF. Negative twice in sweat tests and for the 87 genetic mutations test. Then another doc today argues with me that despite the history of chronic pnuemonia and sinusitis and failure to thrive and congestive heart failure and diabetes and positive trypsin and negative fecal fat study (after placement on Pancrease) that she DOESN'T have CF and only has CELIAC DISEASE and that Down's Syndrome (which she has) isn't associated with CF (though I've read in numerous places that it IS assoicated with CF) has now ordered yet more tests to rule out CELIAC DISEASE and strongly oposed me requiring further CF testing thru AMBRY's comprehensive analysis and swore up and down I'll only get a negative result. Now I'm at odds with what to do and whether I should just wait for the CELIAC test results and leave the CF alone?? What should I do? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 I do not understand why a doctor would refuse to do this test for you. He/She should put your mind to rest. I am sorry that you have to deal with a doctor that has no empathy. Stay strong, Gale > Help!!!! My girl has been in the hospital five times since Jan. this year. > First two gastros said they suspected CF. Negative twice in sweat tests and > for the 87 genetic mutations test. Then another doc today argues with me > that despite the history of chronic pnuemonia and sinusitis and failure to > thrive and congestive heart failure and diabetes and positive trypsin and > negative fecal fat study (after placement on Pancrease) that she DOESN'T have > CF and only has CELIAC DISEASE and that Down's Syndrome (which she has) isn't > associated with CF (though I've read in numerous places that it IS assoicated > with CF) has now ordered yet more tests to rule out CELIAC DISEASE and > strongly oposed me requiring further CF testing thru AMBRY's comprehensive > analysis and swore up and down I'll only get a negative result. Now I'm at > odds with what to do and whether I should just wait for the CELIAC test > results and leave the CF alone?? What should I do? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 I do not understand why a doctor would refuse to do this test for you. He/She should put your mind to rest. I am sorry that you have to deal with a doctor that has no empathy. Stay strong, Gale > Help!!!! My girl has been in the hospital five times since Jan. this year. > First two gastros said they suspected CF. Negative twice in sweat tests and > for the 87 genetic mutations test. Then another doc today argues with me > that despite the history of chronic pnuemonia and sinusitis and failure to > thrive and congestive heart failure and diabetes and positive trypsin and > negative fecal fat study (after placement on Pancrease) that she DOESN'T have > CF and only has CELIAC DISEASE and that Down's Syndrome (which she has) isn't > associated with CF (though I've read in numerous places that it IS assoicated > with CF) has now ordered yet more tests to rule out CELIAC DISEASE and > strongly oposed me requiring further CF testing thru AMBRY's comprehensive > analysis and swore up and down I'll only get a negative result. Now I'm at > odds with what to do and whether I should just wait for the CELIAC test > results and leave the CF alone?? What should I do? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 I do not understand why a doctor would refuse to do this test for you. He/She should put your mind to rest. I am sorry that you have to deal with a doctor that has no empathy. Stay strong, Gale > Help!!!! My girl has been in the hospital five times since Jan. this year. > First two gastros said they suspected CF. Negative twice in sweat tests and > for the 87 genetic mutations test. Then another doc today argues with me > that despite the history of chronic pnuemonia and sinusitis and failure to > thrive and congestive heart failure and diabetes and positive trypsin and > negative fecal fat study (after placement on Pancrease) that she DOESN'T have > CF and only has CELIAC DISEASE and that Down's Syndrome (which she has) isn't > associated with CF (though I've read in numerous places that it IS assoicated > with CF) has now ordered yet more tests to rule out CELIAC DISEASE and > strongly oposed me requiring further CF testing thru AMBRY's comprehensive > analysis and swore up and down I'll only get a negative result. Now I'm at > odds with what to do and whether I should just wait for the CELIAC test > results and leave the CF alone?? What should I do? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2002 Report Share Posted November 9, 2002 If your doctor orders the test, will welfare or SSI pick it up? I was on welfare when Toni was little (about 25 years ago). I can't remember too much about how everything worked. I had a medical card for her and I don't think that I had to pay for anything??? I sure hope that you have the same access to medical care and testing that people with insurance have. Take care, Gale > Gale, since I'm on welfare and SSI the Ambry testing is expensive, almost > beyond my reach, so I'm now waiting for the celiac disease testing and > biopsy, hoping I might eventually find a definite diagnosis for her. In the > meantime, the gastro said to take her off the pancrease enzymes and see how > she does, caue he says there is NO pancreatic insufficiency in her and that > her Amylse levels (now at over 1700) are okay. We're gonna hang in there for > the ride and keep on praying, that's all I can do now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2002 Report Share Posted November 9, 2002 If your doctor orders the test, will welfare or SSI pick it up? I was on welfare when Toni was little (about 25 years ago). I can't remember too much about how everything worked. I had a medical card for her and I don't think that I had to pay for anything??? I sure hope that you have the same access to medical care and testing that people with insurance have. Take care, Gale > Gale, since I'm on welfare and SSI the Ambry testing is expensive, almost > beyond my reach, so I'm now waiting for the celiac disease testing and > biopsy, hoping I might eventually find a definite diagnosis for her. In the > meantime, the gastro said to take her off the pancrease enzymes and see how > she does, caue he says there is NO pancreatic insufficiency in her and that > her Amylse levels (now at over 1700) are okay. We're gonna hang in there for > the ride and keep on praying, that's all I can do now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2002 Report Share Posted November 10, 2002 I am on that same team with you & hold you all in my daily thoughts. It will clear up soon , as far as info goes. Hopefully the correct Dx will bring about better treatments , etc too. LOVE & HUGS, grandmomBEV Re: CF and Celiac Disease If your doctor orders the test, will welfare or SSI pick it up? I was on welfare when Toni was little (about 25 years ago). I can't remember too much about how everything worked. I had a medical card for her and I don't think that I had to pay for anything??? I sure hope that you have the same access to medical care and testing that people with insurance have. Take care, Gale > Gale, since I'm on welfare and SSI the Ambry testing is expensive, almost > beyond my reach, so I'm now waiting for the celiac disease testing and > biopsy, hoping I might eventually find a definite diagnosis for her. In the > meantime, the gastro said to take her off the pancrease enzymes and see how > she does, caue he says there is NO pancreatic insufficiency in her and that > her Amylse levels (now at over 1700) are okay. We're gonna hang in there for > the ride and keep on praying, that's all I can do now. PLEASE do not post religious emails to the list. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2002 Report Share Posted November 10, 2002 I am on that same team with you & hold you all in my daily thoughts. It will clear up soon , as far as info goes. Hopefully the correct Dx will bring about better treatments , etc too. LOVE & HUGS, grandmomBEV Re: CF and Celiac Disease If your doctor orders the test, will welfare or SSI pick it up? I was on welfare when Toni was little (about 25 years ago). I can't remember too much about how everything worked. I had a medical card for her and I don't think that I had to pay for anything??? I sure hope that you have the same access to medical care and testing that people with insurance have. Take care, Gale > Gale, since I'm on welfare and SSI the Ambry testing is expensive, almost > beyond my reach, so I'm now waiting for the celiac disease testing and > biopsy, hoping I might eventually find a definite diagnosis for her. In the > meantime, the gastro said to take her off the pancrease enzymes and see how > she does, caue he says there is NO pancreatic insufficiency in her and that > her Amylse levels (now at over 1700) are okay. We're gonna hang in there for > the ride and keep on praying, that's all I can do now. PLEASE do not post religious emails to the list. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2002 Report Share Posted November 10, 2002 I am on that same team with you & hold you all in my daily thoughts. It will clear up soon , as far as info goes. Hopefully the correct Dx will bring about better treatments , etc too. LOVE & HUGS, grandmomBEV Re: CF and Celiac Disease If your doctor orders the test, will welfare or SSI pick it up? I was on welfare when Toni was little (about 25 years ago). I can't remember too much about how everything worked. I had a medical card for her and I don't think that I had to pay for anything??? I sure hope that you have the same access to medical care and testing that people with insurance have. Take care, Gale > Gale, since I'm on welfare and SSI the Ambry testing is expensive, almost > beyond my reach, so I'm now waiting for the celiac disease testing and > biopsy, hoping I might eventually find a definite diagnosis for her. In the > meantime, the gastro said to take her off the pancrease enzymes and see how > she does, caue he says there is NO pancreatic insufficiency in her and that > her Amylse levels (now at over 1700) are okay. We're gonna hang in there for > the ride and keep on praying, that's all I can do now. PLEASE do not post religious emails to the list. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
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