Hi there Smith,
I know of 2 other tests you should be able too ask for.
The first is the sweat test, people with CF sweat 100% more salt than the average human, making a sweat test very accurate in diagnosis.If the concentration of chloride is >60 mEq/L, the test is positive; 40-60 mEq/L is borderline; <40 mEq/L is negative.
The second is a blood test. I believe this is less accurate. It involves taking blood and looking for the 2 copies of the CF gene. However there are many different mutations of the gene, and they can only actually spot like half of them too date.
Some of your symptoms do sound similar too symptoms of CF. However, it could just be that you've had bad luck,and had all the symptoms, yet don't have CF itself. Bad luck-because it obviously makes treating you a lot more difficult. Sinuses I know of a few people with CF who have has nasal polyps, and have had too have an op. Pnumonia-not heard of too many people with CF getting it. We were once advised too get the vaccine as we were more at risk, but since it's being decided it's the same risk as "normal" people. Acid reflux can be a CF symptom, but then, I think most people can get it anyway.
The one symptom I would say sounds least likely, is the constipation. Because it most people with CF, the chloride channels are blocked in the pancreas, meaning mucous builds up there, the same way as it would in the lungs. This blocks important enzymes getting through, meaning food cannot be digested, meaning it passes straight through. More likely causing very bad diorrhea, with greasy and floaty stools. You will find most people with CF, are on an enzyme supplement, like Creon. These put the enzymes in there, so food can be digested. I know personaly if I miss one dose of creon with a high calorie meal. I end up paying for it, by spending the next day running too the toilet.
However you could be one of the few that are pancreatic sufficient, meaning you don't have a blocked up pancreas so enzymes in your body work. The constipation thing could be another problem entirley.
You're right in thinking the best thing to do, is too mention your concerns and ask for testing. The earlier you are diagnosed with CF, the quicker you can be put on meds too make you feel more comfortable.
Concerned aunt/mom- How have the tests gone, have the results come back yet? I hope things have gone ok, and it turns out none of your family has CF. Hope you're all doing well!
Best Wishes to you both!
Moderator of the Cystic Fibrosis Forums
Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Posted 6/20/2008 12:30 PM (GMT -7)
I understand being scared and yet wanting answers. Lots of times it is hard to ask the questions, because we aren't sure we want the truth.
My nephew has been struggling with pneumonia and bronchitis for over a year. Continual cough and trouble with digestion, along with weight loss. He did have symptoms as a child that follow CF signs, but I'll be the first to admit it is easy to take a lot of the symptoms to far. That is why CF is wrongly diagnoised or for the same reason not diagnoised. The only way to know is to get tested.
My nephew's regular doctor kept treating the symptoms and not the cause. He has been on antibiotics and cold medication for almost that entire year. He too was treated for allergies. It was a chest x-ray that was the first sign of CF. They said the chest x-ray showed that it was not just fluid in his lungs, but mucus. From there he was sent to a specialist. He administered a sweat test. The first test was positive. However, things are in limbo now. His second sweat was negative and so was his blood test (but that is not uncommon). So now they are saying it is not CF, but not for sure. He goes back for more testing next week.
All I can say is keep pressing. You need the answers no matter what they are. A sweat test is the way to rule out or find out if it is CF.
As far as my family, we are waiting for those answers. When they determine what is wrong with my nephew if it is CF or not we will deal with it. Then we will determine if testing for his brother or any cousins is needed.
My prayers go out for all of you.
Currently it is Tuesday, December 18, 2018 12:01 PM (GMT -7)
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