Hi

I didn't have the genetic testing, but my doctor sent me for a sweat test, which was negative, so he said no further testing was needed. Did you have the sweat test first? Or did they go directly to the genetic testing? I too have been diagnosed with ideopathic CP and I always wonder what could be the cause. I also have a slight family history, my mother may have had it. But she passed away a long time ago and none of her medical records are available. I talked to her primary care doctor and he couldn't be sure, but he said her symptoms, etc fit with CP.

I hope all goes well for you!

My GI doctor never did any testing for CF. I have been meeting with a surgeon so I am hooked up with the best one if I become in a situation where I need surgery immediately. I asked him for the genetic testing because it would make the difference between the . whipple or a total pancreas removal. I have a faint history of pancreatitis and duct disease in my family. There is no reason to take part of the pancreas if I have genetic condition that is causing my pancreatitis. I have divisum so their theory was that the whipple would work by making a big duct but I wanted to rule out anything else and I am glad I did. My GI doc just emailed last night saying that this mutation in one copy of the cystic fibrosis gene and pancreas divisum is linked heavily to the development of chronic pancreatitis. Alone, the divisum and this gene mutation usually do not cause a problem but together they do. I think a telltale sign is my chronic constipation. That doesn't usually happen with chronic pancreatitis but is a CF symptom.

my son had the sweat test ( neg) and the genetic through Ambry...he was positive for one mutation in the CFTR ( which they said means he is a carrier) also positvie for the SPINK 1...... they were talking partial until they read the genetic testing.....not sure but I think it was the SPINK 1 that made the final decision..... hugggsss........ps aftere 2 failed previous surgeies...I was not wanting a partial!!!!

Thank you for the replies! I was negative too for the sweat test and my GI said further testing wasn't necessary, but I wonder if I should have the genetic testing. I also have chronic constipation. And I had major issues around my menstrual cycles, I had endometriosis, that got better once I had a hysterectomy. I have a lot of issues with sinus infections and nasal congestion, constantly dealing with mucus and phlegm, sorry if it's TMI. Is that a CF sign?

Thanks!
GG

garden girl...it may be.... i would definetly get the genetic done girl!!! good luck

Thanks! I will have a talk with my GI doc. How is your son doing since his surgery?

he is 7 months post op TP/AIT....a hell of a ride!!!! not fun!! BUT.....today his islet cells are working 100% he is off all inslin and his last C- peptide test was 3.8!!!! wooo hoooo
he does have pain from time to time but he an deal with it....his hardest part is (since he lost 7 years of his life) he now has to be an adult and live a life....but he has a good mama....so he will take it slow....he was depresed for quite some time!!! but I can see a very very slow turn for the beter..... thanx for asking hun hugggss

Omg you sound like me. I only have a pancreatic attack during my menstral cycle. I have cystic fibrosis all thru my family. I am unsure if I am a carrier or not? I haven't tested myself only my children and they were negative thank god. Before and during my period my stomach goes enormous I have adenomyosis too and thought it was from that. But my doctor is saying its chronic pancreatis. Was in hospital with really bad pain scale 20/10 thought it was a heart attack. Blood tests very high levels. Slowly coming back down. Why is it only happening during cycles? I am not a drinker as if I try to have a drink (before diagnosed) it would make me feel sick? I don't have a gallbladder either? I am very confused of this diagnoses.? It think it must be genetic I eat healthy? Not overweight. I have surgery for the adenomyosis on Friday so I just are shocked to be thrown this ATM?

Hi Thunder,

You should ask your doctor to test you as just having the gene fir CF can pre-dispose to CP.

Good luck?
GG

I realize this is an old post but just wanted to add my bit:
I have the CFTR Gene Mutation and multiple other mutations that combined with it cause a lot of health issues.
I have chronic sinusitis for which I have had multiple surgeries for nasal polyps and been on antibiotics for years at a time. Chronic Pancreatitis, with many acute attacks, & surgery for pseudocysts, and Sarcoidosis (which, in many studies has also been found to be connected with the CFTR mutations). Sarcoidosis which is an auto-immune disease. When they did surgery on my pancreas they found that the cells in the cyst were the same as the Sarcoid cysts in my lungs and lymph glands. I also have Hoshimoto's Thyroiditis (another auto-immune disorder). Interstitial Cystitis, (another auto-immune disorder). As you can see there are many inter-related issues going on with my health. It seems the older I get the disorders are added on.... Every couple of years I poke my head up and see if there isnt someone who can help me. I go to a couple new Dr's, get a couple more opinions and inevitably they run out of things to try and the ball gets dropped again. My hope of help goes out the window for a few more years...
It has been a very frustrating journey to say the least!