Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 , I don't know a whole lot about Celiac but my mother in law was diagnosed with it about a year ago. Why are you testing your child for celiac? I know it is also an inherited disease and I worry about my girls having it on top of the CF. I really worry about my middle child who does not have CF because she complains about her stomach the most. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 What is Celiac disease? I see alot of talk about it on this site . Thanks.... Crystal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 Thanks for responding. We are testing my daughter because she has lots of stomach aches and she has lots of joint pain. There are so many similarities with CF and celiac. Two of our CF friends were just diagnosed with celiac disease and we want to make sure doesn't have it too. We have about six family members with celiac disease and this worries our doctors. It is tested by blood work, you might ask your doctor to do the test to at least rule it out. Lorenzen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 Thanks for responding. We are testing my daughter because she has lots of stomach aches and she has lots of joint pain. There are so many similarities with CF and celiac. Two of our CF friends were just diagnosed with celiac disease and we want to make sure doesn't have it too. We have about six family members with celiac disease and this worries our doctors. It is tested by blood work, you might ask your doctor to do the test to at least rule it out. Lorenzen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 In a message dated 7/16/2002 10:35:51 PM Central Standard Time, Tysidtan2@... writes: > What is Celiac disease? I see alot of talk about it on this site . > Thanks.... > Crystal It is a genic disease where you cannot eat food with glutton in it or you will have diarrhea really bad and bad stomach aches so you would think it might be the CF that is causing the stomach aches. Hope this helped Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 In a message dated 7/16/2002 10:35:51 PM Central Standard Time, Tysidtan2@... writes: > What is Celiac disease? I see alot of talk about it on this site . > Thanks.... > Crystal It is a genic disease where you cannot eat food with glutton in it or you will have diarrhea really bad and bad stomach aches so you would think it might be the CF that is causing the stomach aches. Hope this helped Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 In a message dated 7/16/2002 10:44:52 PM Central Standard Time, lisacl87@... writes: > anks for responding. We are testing my daughter because she has lots of > stomach aches and she has lots of joint pain. There are so many > similarities > with CF and celiac. Two of our CF friends were just diagnosed with celiac > disease and we want to make sure doesn't have it too. We have about > > six family members with celiac disease and this worries our doctors. > It is tested by blood work, you might ask your doctor to do the test to at > least rule it out. > Lorenzen My mother in law says to get an accurate diagnoses you need a biopsy of the intestines and I hate to see my girls go thru that. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 In a message dated 7/16/2002 10:44:52 PM Central Standard Time, lisacl87@... writes: > anks for responding. We are testing my daughter because she has lots of > stomach aches and she has lots of joint pain. There are so many > similarities > with CF and celiac. Two of our CF friends were just diagnosed with celiac > disease and we want to make sure doesn't have it too. We have about > > six family members with celiac disease and this worries our doctors. > It is tested by blood work, you might ask your doctor to do the test to at > least rule it out. > Lorenzen My mother in law says to get an accurate diagnoses you need a biopsy of the intestines and I hate to see my girls go thru that. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 ; see list of web page links that I posted to cf parents; if these don't take, then post me back and I will send them to you directly. I got them by typing Google.com into my address bar, and then when the Google page came up, I typed Celiac Disease into that address bar, and tons of stuff came up--some iffy, some obvious ly rather good. You should just " browse " a bit. The sites I sent are just " starters. " Good luck to you, n wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2002 Report Share Posted July 16, 2002 ; see list of web page links that I posted to cf parents; if these don't take, then post me back and I will send them to you directly. I got them by typing Google.com into my address bar, and then when the Google page came up, I typed Celiac Disease into that address bar, and tons of stuff came up--some iffy, some obvious ly rather good. You should just " browse " a bit. The sites I sent are just " starters. " Good luck to you, n wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Hi , there is a woman on this list, MJ Strickland (that lady who can't stand the word " Grandmom " , you remember?). Her grandson has CF as well as celiac. I am not sure whether she is reading list mail at the moment, so please write to her directly at davstrickland@... Of course CF and Celiac is a double whammy, but celiac alone imho is not that much of a problem, when you follow the diet. But then following the diet means extra $$ and extra time to read the ingredients of all those factory foods. Good Luck! Torsten > I am in need of any information that anyone on this group has about cf and > celiac disease. Does anyone have children with both diseases? My friend who > has two cf children and one unborn cf child just got diagnosed with celiac > disease too. My daughter is now being tested for it also. > Please give me any info about how this complicates matters and tips on diets. > Thank you, > Lorenzen, mom of , 15 wcf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 Torsten, (my dearest expert!!!) Yes, I'm still reading the list......and yes our grandson was evaluated for Celiac disease...and from the last biopsy...was found to have damaged villi... " Not indicative of celiac disease. " . We did do a gluten free diet for several months, with good results as far as weight gains, and my opinion is that, this time allowed his gut to heal itself without being irritated by gluten.. Basically all forms of gluten are removed from the diet...really just good old fashioned single ingredient foods minus breads, wheat flours..rice grains and products are ok....no good for someone who is dependent on convenience foods. Our best information came from the Internet....and the Celiac Sprue Society. He still struggles with weight gains, but lung wise all is well..(she says knocking on wood..) He still prefers rice over wheat and corn...I think his belly just feels better with rice products. Puffed rice cereal with chocolate syrup is his favorite. And I still prefer to be called " Beary " ....and I'm still reading.....and hoping all is well with all of you.... mj.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 Torsten, (my dearest expert!!!) Yes, I'm still reading the list......and yes our grandson was evaluated for Celiac disease...and from the last biopsy...was found to have damaged villi... " Not indicative of celiac disease. " . We did do a gluten free diet for several months, with good results as far as weight gains, and my opinion is that, this time allowed his gut to heal itself without being irritated by gluten.. Basically all forms of gluten are removed from the diet...really just good old fashioned single ingredient foods minus breads, wheat flours..rice grains and products are ok....no good for someone who is dependent on convenience foods. Our best information came from the Internet....and the Celiac Sprue Society. He still struggles with weight gains, but lung wise all is well..(she says knocking on wood..) He still prefers rice over wheat and corn...I think his belly just feels better with rice products. Puffed rice cereal with chocolate syrup is his favorite. And I still prefer to be called " Beary " ....and I'm still reading.....and hoping all is well with all of you.... mj.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 Torsten and all..... here's a link to on line support group CEL-KIDS@... for general celiac discussion celiac@... Hope this will help.... mj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 Torsten and all..... here's a link to on line support group CEL-KIDS@... for general celiac discussion celiac@... Hope this will help.... mj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 In a message dated 11/5/2002 6:11:50 AM Central Standard Time, mamabear@... writes: > At www.celiac.com, they did list cystic fibrosis as " related " to celiac > -- meaning that you are more likely to find someone in the family with > the other disorder if you have one. If that makes any sense! I never > know how to clearly word that My mother in law has celiac. That is very interesting. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 In a message dated 11/5/2002 6:11:50 AM Central Standard Time, mamabear@... writes: > At www.celiac.com, they did list cystic fibrosis as " related " to celiac > -- meaning that you are more likely to find someone in the family with > the other disorder if you have one. If that makes any sense! I never > know how to clearly word that My mother in law has celiac. That is very interesting. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 In a message dated 11/5/2002 6:11:50 AM Central Standard Time, mamabear@... writes: > At www.celiac.com, they did list cystic fibrosis as " related " to celiac > -- meaning that you are more likely to find someone in the family with > the other disorder if you have one. If that makes any sense! I never > know how to clearly word that My mother in law has celiac. That is very interesting. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 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 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 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 My son wcf, and his dad, are also unable to tolerate gluten, we recently discovered. I was considering pursuing diagnosis but am not sure I even want to go that route -- we're just avoiding gluten. If you are avoiding gluten and she still has gastrointestinal symptoms, then something else is going on -- because celiacs are normal so long as they are on a gluten-free diet. I also found out that there are many " levels " of gluten intolerance, from an intolerance to full-blown celiac. And that there is also the possibility that it isn't an intolerance at all, but an allergy to gluten. The two work differently in terms of the immune reaction. I have no idea which form of gluten intolerance or allergy my husband and son have but well, the treatment is simple. At www.celiac.com, they did list cystic fibrosis as " related " to celiac -- meaning that you are more likely to find someone in the family with the other disorder if you have one. If that makes any sense! I never know how to clearly word that. And yes, in terms of mistaking one for the other: both cause pale, bulky, fatty stools and gastrointestinal discomfort. )O( mama to , 2yo, wCF and alpha-1 and to , 4 yo, w/alpha-1 but no CF CF and Celiac Disease 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 5, 2002 Report Share Posted November 5, 2002 My son wcf, and his dad, are also unable to tolerate gluten, we recently discovered. I was considering pursuing diagnosis but am not sure I even want to go that route -- we're just avoiding gluten. If you are avoiding gluten and she still has gastrointestinal symptoms, then something else is going on -- because celiacs are normal so long as they are on a gluten-free diet. I also found out that there are many " levels " of gluten intolerance, from an intolerance to full-blown celiac. And that there is also the possibility that it isn't an intolerance at all, but an allergy to gluten. The two work differently in terms of the immune reaction. I have no idea which form of gluten intolerance or allergy my husband and son have but well, the treatment is simple. At www.celiac.com, they did list cystic fibrosis as " related " to celiac -- meaning that you are more likely to find someone in the family with the other disorder if you have one. If that makes any sense! I never know how to clearly word that. And yes, in terms of mistaking one for the other: both cause pale, bulky, fatty stools and gastrointestinal discomfort. )O( mama to , 2yo, wCF and alpha-1 and to , 4 yo, w/alpha-1 but no CF CF and Celiac Disease 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 5, 2002 Report Share Posted November 5, 2002 My son wcf, and his dad, are also unable to tolerate gluten, we recently discovered. I was considering pursuing diagnosis but am not sure I even want to go that route -- we're just avoiding gluten. If you are avoiding gluten and she still has gastrointestinal symptoms, then something else is going on -- because celiacs are normal so long as they are on a gluten-free diet. I also found out that there are many " levels " of gluten intolerance, from an intolerance to full-blown celiac. And that there is also the possibility that it isn't an intolerance at all, but an allergy to gluten. The two work differently in terms of the immune reaction. I have no idea which form of gluten intolerance or allergy my husband and son have but well, the treatment is simple. At www.celiac.com, they did list cystic fibrosis as " related " to celiac -- meaning that you are more likely to find someone in the family with the other disorder if you have one. If that makes any sense! I never know how to clearly word that. And yes, in terms of mistaking one for the other: both cause pale, bulky, fatty stools and gastrointestinal discomfort. )O( mama to , 2yo, wCF and alpha-1 and to , 4 yo, w/alpha-1 but no CF CF and Celiac Disease 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 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...
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