Anyone Have Adult Diagnosed Cystic Fibrosis?

[powerofpositivethinking]

To be upfront, I have very limited knowledge of cystic fibrosis, and it is only something recently I have been researching.  Just to be on the safe side, at my next GI appointment I want to ask to have a gene test done for cystic fibrosis.  I've been diagnosed with Vitamin K deficiency, neutral and total fat malabsorption and although I am still waiting to visually see the results, I got a call from the GI office the other day telling me that my pancreatic elastase levels were abnormally low indicating pancreatic insufficiency.  

 

I know that now CF is a common screening for babies, but I was born way before that was a routine screening.  It seems the gene test and sweat test offer the best diagnosis, so I thought I should ask for the gene test first.

 

I am hopeful this is all celiac related, but I would feel more at ease getting tested for CF.  I have read that some mild cases have been diagnosed in adults, so if anyone has any insight, I would appreciate it!

 

This is the test I was going to ask for:  Open Original Shared Link

[HavaneseMom]

Sorry to hear you are having these issues.

I had the genetic testing about 7 years ago. If I remember correctly, they took about 5 tubes of blood. When I asked my doctor,for the test he said the protocol was to send me to genetic counseling before having the blood work taken. I told him I wasn't interested in doing that unless it came back positive, so I just had the bloodwork done and it came back negative. I had the test because my brothers little boy has cystic fibrosis and I wanted to find out if I was a carrier in case I had children. My brothers son wasn't screened at birth, but became very ill from it shortly after he was born. He was in the hospital sick for a whole month before they finally tested him for CF and he was diagnosed. I hadn't heard of adult diagnosed CF before, but was curious and did a Internet search too. It seems like "sputum" production is often present. I know my nephew has lots of sputum in his lungs and has to wear a vest that shakes it loose so he can cough it up every day. He also takes creon before meals for absorption. I think there is a active CF community somewhere online, similar to this celiac one. They might be able to help you too. Hopefully this is all celiac related for you though and you will get better soon.

[Ninja]

I have two friends (they are siblings) who were diagnosed in their late twenties. Neither of them have the most common genetic variation that predisposes to the more severe form of CF. One has more issues with her lungs, while the other has more significant GI issues and very little lung involvement. I believe they were diagnosed via the sweat test and subsequently, for the genes.

 

I certainly understand your desire to rule this out! Good idea. I, too, hope this is all celiac related and will improve as time moves on. Keep us posted.

 

Best wishes,

Ninja

[CaliSparrow]

Wow. I'm sorry you are experiencing these issues. I had no idea someone could be diagnosed with CF in adulthood. Good luck to you. I hope that it is "simply" Celiac.

Take good care of yourself.

Cali

[powerofpositivethinking]

thanks, everyone!  

 

I don't get sinus or lung infections ever which is why I believe it's probably celiac related.  Way back when my first Vitamin K test came in low I remember the GI asking, no cystic fibrosis, correct?  I told him not that I was aware, and there's no family history.  I'd rather get the gene test to be sure, so I'm hoping he'll agree to it.  

 

Here's an article about CF in adults:  Open Original Shared Link

[powerofpositivethinking]

I did ask the doctor about getting tested, and he was receptive to it.  He said he will have to make some calls to verify that the gene testing will go through insurance since he didn't want me to get slammed with a massive bill.