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Does anyone have any information about Cystic Fibrosis carriers and the relationship to pancreatitis. I have been battling pancreatitis since November. All of the specialists I have seen have told me that my case is not your average pancreatitis, that the presentation is not of a classic nature. In April my GI doc ran some genetic testing and it came back that I am "at least a carrier" of cystic fribrosis. Now I am told that all we can do is manage the illness. Any information would be great!
Thanks,
Kevin

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My understanding is that with chronic pancreatitis (which is not the same as pancreatitis) that there is a correlation with carriers of cystic fibrosis. I'm not sure what else you are looking for in terms of information but it is true that you are going to have to manage the illness. What else would you like to know about it? I hope that what I posted was helpful or informative. Thanks!
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Not all chronic pancreatitis is correlated to being a carrier of cystic fibrosis gene; there are other reasons. However, if you are a carrier of the CF gene, then you should have further genetic testing done to conclude whether you have the CF gene mutation(s) that are related to idopathic chronic pancreatitis. I have cf-related pancreatitis. Once I found out I was a carrier of the CF gene, I had special genetic testing done at Ambry Genetics in California (I live in PA) and this test confirmed the CF. It is very expensive. You will need to work with your doctor and insurance company to see if you can have the costs covered.
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Hi there I was diagnosed with Chroic Pancreatitis in 2005.

I am a known C.F carrier as I have son with Cystic Fibrosis.

If you are still looking for replies then please answer this and I will give you contact details.

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my son was also tested for the gene and is positive. His first pancreatitis attack at age 19. He has had at least one every year for the past 5 yrs. These have ranged from severe to moderate. GI (we feel we had the best in the country) states the same. Manage it and hope there is a medical breakthrough.
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How is your son?have you heard of any new treatments? My daughter is also having a difficult time.
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Nothing new that I am aware of. Thigh as we speak my son has been two years without an attack.
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I am really glad to hear that. Best wishes.
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I am a carrier too. R347P/H. I have had pancreatitis, gall bladder out in my 20's. Greater then 20stones over an inch in diameter they stopped counting the stones, contant digestive problems GERD, fat in my stools. Constant sinis infections, I constantly have a dry cough which sometimes I can bring mucus up. They call it asthma but nome of the meds work. And a contant post Basel drip. And the list goes on. My GI doctor said all my problems are most likely caused because I am a carrier and we will just have to treat things as they come up. At least she acknowledges that carriers have problems.
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I am a CF carrier w/a sister w/CF & I have had idiopathic pancreatitis multiple times. I also have fatty stools quite often, along w/regularly occurring diarrhea (sorry for TMI). I didn't know it was related to the CF gene until I started reading into it. I am thankful that I stumbled upon this post.
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