Does a Carrier of the CF gene exhibit symptoms?

I was actually tested after my kids were tested and discovered they were carriers. So, I was tested for free.

There are nearly 2000 Known mutations

CFMS .. Cystic fibrosis Metabolic Syndrome :))

My family history includes asthma, gallbladder, plus I am a CF carrier and had 2 children with cf my daughter passed at age 8 with severe lung problems, my son passed at age 47 from pancreatic cancer. My other 2 children have had stomach problems and sinus problems. I firmly believe being a carrier subjects you to life long symptoms.

This is an interesting web site. My husband is a carrier as was his mother, aunt(and her only son), and uncle (who had three children with CF). Our daughter is a carrier. My husband suffers from chronic sinus infections. I have done some research on the link to pancreatic cancer in carriers. My daughter is having some digestive issues so I wonder if it is because she is a carrier. It is hard to find much out on carriers.

Ok, here goes my two cents. I am 40 years old, female. Recently I was informed by my RE that I am a carrier for CF. No further testing as of yet. i TOO have all of these symptoms. GERD, anemia, insulin resistance, excesive sweating on my nose, I pass out easily in high humidity, digestive issues, shortness of breath, heart palpitations, and recently my alkaline phosphatase levels came back high - indicating liver/pancreas problems.

Why are so many carriers reporting the same issues? Maybe it is not important since maybe the symptoms are not as bad as full blown CF?

I am a carrier for Delta F 508. I know this for I have been genetically tested AFTER my daughter was born with CF. My childhood was "asthma" and severe allergies and required Chest PT at times to be able to breathe. My colds are worse, mucus thicker, etc. My son is a carrier of the same gene mutation. He has started at 14 to have some of the me bowel problems my daughter has including severe reflux, severe stomach pains, diarrhea, etc. We are taking him to a GI doctor who thinks there may be more to this CF Trait thing. Even more interesting....my daughter has now had TWO double lung transplants. First transplant she had normal mucous in the lungs, the second set it's more consistent with her old CF lungs. Turns out her second donor was a carrier for CF! No explanation yet but it blows everyone's mind! Point...there is way more we DON'T know about this then things we do.

Very interesting topic. I had know idea that some carriers of CF exhibited symptoms. My brother has CF, and my sister is a carrier (not sure what strain). Neither of my parents (who must be carriers) have exhibited any of the symptoms discussed here. My sister is having some digestion issues recently; though seem to be the opposite of CF digestion problems. Curious that some carriers exhibit symptoms and others don't.

I don't think that any of the research or health professionals are acknowledging it because as a carrier, the symptoms are just bad enough for you to suffer with but its not life threatening. I get on the internet and i find page after page after page of CF carriers that have the exact same symptoms - as do I. I agree.. it can be NOTHING like having full blown worst mutations of CF - but that doesn't mean that it doesn't need to be treated. For Christs sake - people are being treated for "chronic fatigue syndrome" and etc. Something need to be done about this and CF carriers need treatment accordingly.. Im 40, and Ive lived my whole life with these symtpoms - yeah.. Im still alive, but why should I suffer and be uncomfrtable if I dont have to be? Im tired of not feeling well. I have to wonder if the health insurances companies are behind the lack of attention to this..? because in america there are a lot of carriers and that could mean big bucks for the health insurance providers.

I am a carrier of the CF gene, I have always had trouble breathing and they called it ashma and now that i am older i am having horribe stomache issue... they say its chronic pancreatitis but they cant find out why... with everything i have gone through i do believe it is sypmtioms of CF. Im in so much pain i wanted the doctors to fix it all.

Hi
I am a Cf Carrier with a Son with Cf (508). I have chronic pancreatitis which was diagnosed in 2005, but probably had symptoms for at least 4 years previously.
I have never heard of CF carriers having CF issues though.
I would love to talk to other people, who are CF carriers and have been diagnosed with Chronic Pancreatitis.
Jan

Good Evening, I am from Scotland in the UK and had no history of CF in my family until my son at the age of 1 month was diagnosed with the delta F508 CF mutation this was 5 years ago and my second son was also diagnosed with CF shortly after birth 2 1/2 years ago. I have always throughout my life had chest infections, thick saliva and sweated easily, My wife has always had bowel and such issues so this lead me to thinking that as we are both carriers of the mutated gene could it be possible that my defective gene is related to the lung issues in CF and my wifes be related to the bowel and pancreatic side so combined this has passed through to our boys as full CF!

 

I questioned this with my doctor before and he as good as told me not to be silly (he is not an expert in CF and to be honest i probably know more) however earlier this year i ended up in hospital for 7 days with pneumonia and as part of the follow up 3 months later I had to see a chest specialist for a full checkup. During this checkup he was going through my records and noticed i had had alot of infections through the years so i mentioned my thoughts and he seemed to agree that this was something they had been looking into due to similar cases over his time in the profession.

 

I have participated in various tests and have been told that although i do not have CF i do obviously carry the defective (508 or 507) gene and that it could be possible that along with the defective gene i could have a gene that is not 100% healthy so not full CF but possibly certian symptoms. I will be attending my first CF clinic in the middle of October and will be having more tests done at the request of the specialists.

 

I certainly think that its not unreasonable that the thought has entered your head and although i cant answer your origional question I do personally believe that it is possible to have certain signs without having full blown CF and from the reaction i have seen from some specialists they seem to think this too however i will keep you up to date regarding how i get on at the clinics ect.

 

Kind regards

 

Mark  

Figured I might as well add my 2 cents just to help the cause that seems to be developing here.

I have been suffering from recurring acute pancreatitis since I was 12 (I'm 26 now). Not chronic though, it doesn't hurt every day, but about 2 or so times a year I get a terrible attack (Lipase over 16,000 last time) and spend a week in the hospital.

Let me just give you a quick list of what they did to find the problem DURING my last attack.

HIDA Scan to check my bile movement from liver to gal bladder and onwards - Perfect results. 100% healthy they said.

ULTRA Sound to look for gal stones or enlarged appendix - Perfect results. 100% healthy again.

CT Scan to check overall 'looks' of my insides. Pancreas was on fire but no scar damage. Everything else was perfect again.

Endoscopy (....so much fun....) to check for stomach causes. Perfect results.

MRI to look very closely at the pancreatic ducts, hoping they were just too small and getting clogged. Aparently mine are huge and better than normal. 100% Healthy and not the cause.

P.S. I don't drink. Every doctor thinks they are going to convince me to "admitting" I drink too much. They always jump straight to that when you get pancreatitis. Well I sure as h*** wasn't a 12 year old alcoholic and I still don't drink now so explain that doc lol.

 

Anyways, we tried diet. Lowered fat intake to 20 grams a day. Haven't had much delicious food in a year. Made it 10 months between attacks. Ate pretty much perfectly and still got a huge attack again this month. They couldn't find ANY reason whatsoever why I have had pancreatitis over 30 times as a 26 year old 'kid' basically.

Then finally one doctor came in and said "This sounds weird but I want to test you for Cystic Fibrosis". He said that it was incredibly rare (not so rare to me I guess) but sometimes a certain CF gene can cause pancreatitis even for a carrier.

Sure as sh*t, I am a carrier. Never even heard of this stuff.

It all made sense though. I looked up the symptoms. When I was a kid I would literally sweat PURE SALT. I'm not talking like "Oh my sweat was a little salty tasting" I mean, when I would play outside, my mom made me come in every hour to peel the chunks of salt off my sideburns and forehead. It was ridiculous. I could literally pull a large flat 'plate' or 'layer' of salt from each sideburn. My doctor as a kid said it was normal and that was that. It backed off when I grew up but I still have some seriously salty sweat. When I dry off from sweating I can rub my head and feel salt falling everywhere (Gross I know).

Also, I was an incredibly small kid. I weighed 90 pounds as a freshman in highschool. Now I'm 160 but I definitely grew way late which is aparently a sign too.

And I'm caucasion which aparently makes me more prone to getting it.

My sister just found out she was a carrier from pregnancy tests and she has had terrible asthma and no asthma treatments have ever helped her. She has lots of respiritory issues too.

My mom is a carrier and she gets pnemonia (spelling? too lazy to google) every year like clockwork.

 

Ok that's pretty much my entire story. I agree 100% that carriers can have symptoms if they have the right mutation or whatever it is. Any doctor who says otherwise should probably read this forum. I know doctors think everything on the internet is complete garbage but I'm just saying, they should put all of us in the same room and test us. See what they decide then lol.

I forgot to add something. My dentists always complain that my saliva is too thick and I have way too much of it. Every morning I have to clear my throat out and it is very very thick almost solid mucus. Also a sign.

I just found this site. My 3 week old grandson was just diagnosed via newborn screening and sweat test with CF.  We had no idea that either our son or our daughter in law were carriers.  However in these 3 short weeks, some coincidences...both my son and dil were extreme "spitters" as babies..projectile.  Our new baby spit up since birth, until they switched him to soy.  I keep trying to think about any signs or anything we could have missed.   My son had a lot of what I think/thought were normal....ear infections, coughs, until his tonsils were removed.  Then he seemed fine. 

Either my husband and I are also carrier...I always sweat profusely with the least exertion.  When I talk on the phone I leave white salt marks...my son does the same, he even corroded titanium glasses when he was a kid, the eye doctor couldn't believe it. 

All this makes me wonder and your posts just tell me that the medical community doesn't know it all.

The grandson has the common mutation plus another rare one,  is it possible, with the rare mutation he may not suffer as many symptoms? 

Any thoughts?