Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 Hm, that is even more interesting. Thanks for sharing that. Because I wanted Jake's CF doc to do the celiac bloodwork when we were in last, since he was drawing blood anyway, and he refused, and said something about a possible false positive. But he said that the tests weren't meant to be used on the general population and when this is done, there can be false positives. But, I bet you are right about something and CF bringing back a false positive. Well, we switched to gluten free with little trouble -- just extra cost, which is hard to absorb. A local bakery, Deland Bakery, does millet and oatmeal breads that are GF (I know there are some that say no oats for celiac, but my kids do fine with it, and upon research, they should be ok if not contaminated with wheat). I couldn't believe they are local and available in every health food store around here! So that was easy...then rice pastas and other substitutes are readily available as well. )O( mama to , 2yo, wCF and alpha-1 and to , 4 yo, w/alpha-1 but no CF Re: CF and Celiac Disease This brings up an interesting situation that happened with my daughter and a couple of other CF children in our town. My daughter has had gastro problems for quite some time, now, we all know that it is not unusual to have these problems when you have CF! A friend of mine's children, all three were recently diagnosed with cf. At the time they drew blood for DNA testing for CF, they also drew for Celiac Disease. When one of their children's test came back high on the Celiac panel and she called me very worried, I immediately went to the Celiac sight to try and educate myself before giving her any kind of advise. I then had my daughter's unexplained gastro problems diagnosed. The symptoms explained many of the problems she has been complaining about. So, I took the info from the Celiac sight to the doctor. Oh, forgot something...........one entire branch of my family has Celiac disease! We had the blood work done on . One test on the panel came back very high. According to the GI specialist, this was the only test on the panel that doesn't come back false positive. We did decide to do the biopsy. It honestly wasn't an invasive procedure at all. A week later the biopsy came back negative. The GI doctor was amazed. He said the one test used to be considered 100% accurate, until some diabetics came back false positive. He says there hasn't been enough studies done with CF'ers and Celiacs to determine that the test comes back false positive due to CF. I was relieved in many, many ways. But, it still didn't explain her continual stomach bloating and aches and bowel problems. Interestingly, it all came down to she feels better off of the enzymes than being on them! She has maintained her weight and is doing wonderful! I don't recommend that this is the answer to all of your children, but, this is what our experience was all about. As for the other family here. They just had a biopsy done on their son about a month ago, and, he doesn't have Celiac either! By the way, each of our children had a different test on the panel come back false positive. My personal conclusion is that CF has something to do with a false positive Celiac blood work tests. Good luck and take care, keep searching and I highly recommend the biopsy. It is clearly the only way to be positive! Lorenzen, Mom of , 15 wcf and an awesome flyer for the Humboldt All-star Cheerleading Competition Team! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 Hm, that is even more interesting. Thanks for sharing that. Because I wanted Jake's CF doc to do the celiac bloodwork when we were in last, since he was drawing blood anyway, and he refused, and said something about a possible false positive. But he said that the tests weren't meant to be used on the general population and when this is done, there can be false positives. But, I bet you are right about something and CF bringing back a false positive. Well, we switched to gluten free with little trouble -- just extra cost, which is hard to absorb. A local bakery, Deland Bakery, does millet and oatmeal breads that are GF (I know there are some that say no oats for celiac, but my kids do fine with it, and upon research, they should be ok if not contaminated with wheat). I couldn't believe they are local and available in every health food store around here! So that was easy...then rice pastas and other substitutes are readily available as well. )O( mama to , 2yo, wCF and alpha-1 and to , 4 yo, w/alpha-1 but no CF Re: CF and Celiac Disease This brings up an interesting situation that happened with my daughter and a couple of other CF children in our town. My daughter has had gastro problems for quite some time, now, we all know that it is not unusual to have these problems when you have CF! A friend of mine's children, all three were recently diagnosed with cf. At the time they drew blood for DNA testing for CF, they also drew for Celiac Disease. When one of their children's test came back high on the Celiac panel and she called me very worried, I immediately went to the Celiac sight to try and educate myself before giving her any kind of advise. I then had my daughter's unexplained gastro problems diagnosed. The symptoms explained many of the problems she has been complaining about. So, I took the info from the Celiac sight to the doctor. Oh, forgot something...........one entire branch of my family has Celiac disease! We had the blood work done on . One test on the panel came back very high. According to the GI specialist, this was the only test on the panel that doesn't come back false positive. We did decide to do the biopsy. It honestly wasn't an invasive procedure at all. A week later the biopsy came back negative. The GI doctor was amazed. He said the one test used to be considered 100% accurate, until some diabetics came back false positive. He says there hasn't been enough studies done with CF'ers and Celiacs to determine that the test comes back false positive due to CF. I was relieved in many, many ways. But, it still didn't explain her continual stomach bloating and aches and bowel problems. Interestingly, it all came down to she feels better off of the enzymes than being on them! She has maintained her weight and is doing wonderful! I don't recommend that this is the answer to all of your children, but, this is what our experience was all about. As for the other family here. They just had a biopsy done on their son about a month ago, and, he doesn't have Celiac either! By the way, each of our children had a different test on the panel come back false positive. My personal conclusion is that CF has something to do with a false positive Celiac blood work tests. Good luck and take care, keep searching and I highly recommend the biopsy. It is clearly the only way to be positive! Lorenzen, Mom of , 15 wcf and an awesome flyer for the Humboldt All-star Cheerleading Competition Team! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2002 Report Share Posted November 7, 2002 LET the tests begin.It will prove you right or the doc right .It cant hurt ......Either way , your sweet precious one should get better treatment with the proper DX. It certainly would help , to know just what the DX is , the sooner , the better. I have you all in my thoughts & I wish for the best for your sweet one LOVE & HUGS, grandmomBEV Re: CF and Celiac Disease 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? 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 7, 2002 Report Share Posted November 7, 2002 LET the tests begin.It will prove you right or the doc right .It cant hurt ......Either way , your sweet precious one should get better treatment with the proper DX. It certainly would help , to know just what the DX is , the sooner , the better. I have you all in my thoughts & I wish for the best for your sweet one LOVE & HUGS, grandmomBEV Re: CF and Celiac Disease 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? 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 7, 2002 Report Share Posted November 7, 2002 LET the tests begin.It will prove you right or the doc right .It cant hurt ......Either way , your sweet precious one should get better treatment with the proper DX. It certainly would help , to know just what the DX is , the sooner , the better. I have you all in my thoughts & I wish for the best for your sweet one LOVE & HUGS, grandmomBEV Re: CF and Celiac Disease 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? 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 7, 2002 Report Share Posted November 7, 2002 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 8, 2002 Report Share Posted November 8, 2002 We are all with you in ALL your doing !! LOVE & HUGS, GRDMBEV Re: Re: CF and Celiac Disease 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 8, 2002 Report Share Posted November 8, 2002 We are all with you in ALL your doing !! LOVE & HUGS, GRDMBEV Re: Re: CF and Celiac Disease 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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