Guest guest Posted January 15, 2004 Report Share Posted January 15, 2004 Jill, Yes, there have been studies that show CF carriers can have CF symptoms, but often not to the degree of pwcf, and certainly not life shortening. I've heard of lots of CF carriers with chronic bouts of asthma, pancreatitis, sinusitus, bronchitis, gall bladder problems, etc. The Danish (or was it the Swedish?) did a study showing that female CF carriers have a higher rate of asthma than non-CF carriers. Also, CF carriers often are low in DHA, which is an omega-3 essential fatty acid. When you're low, you have greater risk of inflammatory symptoms/diseases. Kim > ok, here's my question. I hesitated to ask but I've finally broken down. I've tried to find out about cf carriers and symptoms. As I've said before, I am a carrier. I have the W1282X gene mutation. Since I save copies of medical reports, I pulled out my gene mutation study. It was done in 2000 and it appears they tested 33 " common " mutations. The report says that " this individual is at least a carrier for cf... " > In the research I've tried to do, it seems to indicate that carriers don't have symptoms. However, I have 3 of the " cf " symptoms- I have chronic pancreatitis, chronic sinusitis and asthma. I know that there's probably a link with the pancreatitis but what about the other 2? > I guess I'm wondering if anyone has seen any research suggesting that carriers can be symptomatic. Possibly, it's purely coincidence, but I'm curious. > > Thanks, > Jill- aunt to 6- 1 w/cf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2004 Report Share Posted January 15, 2004 Its funny u should bring that ^...ive been assured carriers dont have symptoms...but i would SWEAR we do.Are we ALL suffering coincidences? Cant wait to hear what others say...i disagree with the dr.s.Theyve been wrong countless times before. Patty, mom to Tyler8wcf and 2 wocf > ok, here's my question. I hesitated to ask but I've finally broken down. I've tried to find out about cf carriers and symptoms. As I've said before, I am a carrier. I have the W1282X gene mutation. Since I save copies of medical reports, I pulled out my gene mutation study. It was done in 2000 and it appears they tested 33 " common " mutations. The report says that " this individual is at least a carrier for cf... " > In the research I've tried to do, it seems to indicate that carriers don't have symptoms. However, I have 3 of the " cf " symptoms- I have chronic pancreatitis, chronic sinusitis and asthma. I know that there's probably a link with the pancreatitis but what about the other 2? > I guess I'm wondering if anyone has seen any research suggesting that carriers can be symptomatic. Possibly, it's purely coincidence, but I'm curious. > > Thanks, > Jill- aunt to 6- 1 w/cf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2004 Report Share Posted January 15, 2004 Jill: We might be cousins! I also have W1282X plus A455E (the " E " obviously stands for excellence). As there are 1000 CF gene mutations (more or less) 33 isn't even a start. It took them three years to give a genetic designation to my A455E. Until then, it was named after me. So much for my small bit of fame. Hal carriers ok, here's my question. I hesitated to ask but I've finally broken down. I've tried to find out about cf carriers and symptoms. As I've said before, I am a carrier. I have the W1282X gene mutation. Since I save copies of medical reports, I pulled out my gene mutation study. It was done in 2000 and it appears they tested 33 " common " mutations. The report says that " this individual is at least a carrier for cf... " In the research I've tried to do, it seems to indicate that carriers don't have symptoms. However, I have 3 of the " cf " symptoms- I have chronic pancreatitis, chronic sinusitis and asthma. I know that there's probably a link with the pancreatitis but what about the other 2? I guess I'm wondering if anyone has seen any research suggesting that carriers can be symptomatic. Possibly, it's purely coincidence, but I'm curious. Thanks, Jill- aunt to 6- 1 w/cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2004 Report Share Posted January 15, 2004 Jill, I believe that chronic sinusitis is common among carriers. Gale > ok, here's my question. I hesitated to ask but I've finally broken down. I've tried to find out about cf carriers and symptoms. As I've said before, I am a carrier. I have the W1282X gene mutation. Since I save copies of medical reports, I pulled out my gene mutation study. It was done in 2000 and it appears they tested 33 " common " mutations. The report says that " this individual is at least a carrier for cf... " > In the research I've tried to do, it seems to indicate that carriers don't have symptoms. However, I have 3 of the " cf " symptoms- I have chronic pancreatitis, chronic sinusitis and asthma. I know that there's probably a link with the pancreatitis but what about the other 2? > I guess I'm wondering if anyone has seen any research suggesting that carriers can be symptomatic. Possibly, it's purely coincidence, but I'm curious. > > Thanks, > Jill- aunt to 6- 1 w/cf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2004 Report Share Posted January 15, 2004 Dori, sounds like a winner to me! n, with Love to you and yours! carriers My mother's side of the family are very prone to ulcerative colitis, an inflamitory disease of the bowel, which I now have, too. And I'm prone to synus trouble, allergies and asthma. I've wondered before about carriers and symptoms. Maybe us carriers need to gang up on the doctors. Dori Ownbey... " If I haven't grown up by now, I'm never going to. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 Dori, we could be twins. I have IBS, asthma, allergies, and chronic sinus problems. I also get migraines, have Raynauds and in the past year, tested positive for lupus. What a lovely cesspool I am. The good news is that I found things that keep everything at tolerable and controlled levels. Most days none of these health things bother me anymore! It's only when I'm under stress and don't follow my self-designed eating plan that things accumulate and go awry. And every day, I have to take a minimum of 400 mg. magnesium glycinate (more when sinuses, migraines, or IBS flares up), and every day I take 250 mg. DHA and eat flax seed. And once or twice a week, I eat broccoli and brussel sprouts sauteed in olive oil with a couple cloves of garlic (they're high in sulfur, which is really important for these health issues). I don't have a gluten intolerance (my sister has celiac, so she can't tolerate any wheat products) but I do think I have a wheat allergy. I stopped by bread and pasta and other wheat products as a way to lose some weight, and then one day I made a batch of homemade biscotti, and after eating a few pieces I noticed my nose got really stuffy. Now I notice that happens whenever I eat something made from wheat flour (but nooo, it doesn't stop me from eating the occasional Oreo, whole grain pasta, or bagel! But it's very occasional because at age 46, I really want to maintain my present weight!) Kim > My mother's side of the family are very prone to ulcerative colitis, an inflamitory disease of the bowel, which I now have, too. And I'm prone to synus trouble, allergies and asthma. I've wondered before about carriers and symptoms. Maybe us carriers need to gang up on the doctors. > > Dori Ownbey... " If I haven't grown up by now, I'm never going to. " > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 Jill, You're welcome. I hope the information helps. There is a ton of information about people with chronic pancreatitis being low in magnesium. You might want to read those abstracts and consider taking magnesium to see if it helps you. Good luck and I hope you feel well soon. Kim > Thank you to all that replied- Patty, Katy, n, Hal, Kim, , Gale, Val, Roxxe. I'm glad I asked as it seems others have similar experiences. > Roxxe, I have asked several of my doctors if they think any of my problems are due to the cf gene and I always get a head shake. Now, after posing this question to all of you, I'm beginning to believe there might be something to this. In February, I'm supposed to see a world-renowned specialist in Boston for my pancreatitis. I plan to broach the subject with him since he is supposedly so knowledgeable and it's a fresh brain to pick. > > Kim, thank you so much for taking the time to find and post the abstracts. I printed 1 of them out. It was a great help and set me in the right direction to get some information. > > n- what you said was very interesting. I have heard that sometimes people don't get diagnosed til adulthood due to mild symptoms. I'm a bit afraid to ask for further testing, but it might be worth it. Maybe the doctor in Boston will recommend it and then I can get it done. Thank you for your candor and your insight. Also, thank you for your help in researching this subject. > > Patty, it looks like we aren't alone in this. The doctors must be wrong! > > I plan to pursue this. Hopefully, I'll come up with something. Thanks again. > > Love, > Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 This just goes to show that even if you don't have CF, you still may have your own kettle of worms to deal with. We only hope that there are more good days than bad. I do agree that the magnesium and other supplements and diets have more to do with our health issues than the doctors want to admit to. They couldn't charge us so much then. Take care. Tina W. Re: carriers Dori, we could be twins. I have IBS, asthma, allergies, and chronic sinus problems. I also get migraines, have Raynauds and in the past year, tested positive for lupus. What a lovely cesspool I am. The good news is that I found things that keep everything at tolerable and controlled levels. Most days none of these health things bother me anymore! It's only when I'm under stress and don't follow my self-designed eating plan that things accumulate and go awry. And every day, I have to take a minimum of 400 mg. magnesium glycinate (more when sinuses, migraines, or IBS flares up), and every day I take 250 mg. DHA and eat flax seed. And once or twice a week, I eat broccoli and brussel sprouts sauteed in olive oil with a couple cloves of garlic (they're high in sulfur, which is really important for these health issues). I don't have a gluten intolerance (my sister has celiac, so she can't tolerate any wheat products) but I do think I have a wheat allergy. I stopped by bread and pasta and other wheat products as a way to lose some weight, and then one day I made a batch of homemade biscotti, and after eating a few pieces I noticed my nose got really stuffy. Now I notice that happens whenever I eat something made from wheat flour (but nooo, it doesn't stop me from eating the occasional Oreo, whole grain pasta, or bagel! But it's very occasional because at age 46, I really want to maintain my present weight!) Kim > My mother's side of the family are very prone to ulcerative colitis, an inflamitory disease of the bowel, which I now have, too. And I'm prone to synus trouble, allergies and asthma. I've wondered before about carriers and symptoms. Maybe us carriers need to gang up on the doctors. > > Dori Ownbey... " If I haven't grown up by now, I'm never going to. " > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 Hi, I have chronic sinusitis (have had 4 surgeries) and asthma. My ENT said I have " cfey " sinuses. I think there is something to the carriers having some symptoms. Almost every parent I know has some kind of sinus problems and/or asthma. My son used to have asthma but I don't know if he is a carrier. love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 Kim; high hopes that you are one of those who tests positive for lupus, but does not actually have it; this is the case with my middle kid and with me. Highest hopes, n Re: carriers Dori, we could be twins. I have IBS, asthma, allergies, and chronic sinus problems. I also get migraines, have Raynauds and in the past year, tested positive for lupus. What a lovely cesspool I am. The good news is that I found things that keep everything at tolerable and controlled levels. Most days none of these health things bother me anymore! It's only when I'm under stress and don't follow my self-designed eating plan that things accumulate and go awry. And every day, I have to take a minimum of 400 mg. magnesium glycinate (more when sinuses, migraines, or IBS flares up), and every day I take 250 mg. DHA and eat flax seed. And once or twice a week, I eat broccoli and brussel sprouts sauteed in olive oil with a couple cloves of garlic (they're high in sulfur, which is really important for these health issues). I don't have a gluten intolerance (my sister has celiac, so she can't tolerate any wheat products) but I do think I have a wheat allergy. I stopped by bread and pasta and other wheat products as a way to lose some weight, and then one day I made a batch of homemade biscotti, and after eating a few pieces I noticed my nose got really stuffy. Now I notice that happens whenever I eat something made from wheat flour (but nooo, it doesn't stop me from eating the occasional Oreo, whole grain pasta, or bagel! But it's very occasional because at age 46, I really want to maintain my present weight!) Kim > My mother's side of the family are very prone to ulcerative colitis, an inflamitory disease of the bowel, which I now have, too. And I'm prone to synus trouble, allergies and asthma. I've wondered before about carriers and symptoms. Maybe us carriers need to gang up on the doctors. > > Dori Ownbey... " If I haven't grown up by now, I'm never going to. " > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 > Jill, > Many CF carriers that I have heard from do have symptoms. Along with the sinus/asthma/allergies things that are common in carriers, > ok, here's my question. I hesitated to ask but I've finally broken down. I've tried to find out about cf carriers and symptoms. As I've said before, I am a carrier. it appears they tested 33 " common " mutations. The report says that " this individual is at least a carrier for cf... " My son's said that as well. It found the " common " gene. It was until we had the Ambry test done they found a second mutation. I have also read that carriers may experience some of the same symptoms of CF.- primarily asthma and sinusitis I think. I would ask for the Ambry test to be done. jan Quote Link to comment Share on other sites More sharing options...
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