40 year old misdiagnoised as a baby

HI, just wondering if anyone knows of a condition LIKE CF?
I am now 40 and was misdiagnosed as having CF when I was 6 months old. I got very ill with Staphylococcal pneumonia and my lung collapsed. When I was hospitalized the doctors contacted the hospital I was born in and discovered I had Meconium ileus at birth. This got them testing and they did some kind of scope and found I was making NO Pancreatic Enzymes. Sweat Tests were high borderline, so my parents were told I had CF. I was treated for 10 years. At about age 8 my mom started thinking they had it wrong, she said I was a little chubby and just didnt look as ill as all the other children at the CF clinic. The doctor finally agreed but said one day there will be a condition discovered that mimicks CF and then we will know. Now, I have always had a lot of health issues but aside from the pneumonia when I was a baby, my lungs have been good. The only issues remotley related to CF are chronic blocked sinuses. Not sure if it is a CF type symptom but suffer from chronic constipation and mucus in my bowels. I am also overweight. I am looking for answers now as I have a condition non histaminergic angioedema and my current doctor says that sometimes it is caused by something internal like a malignancy or an autoimmune condition. My blood work is clear with the exception of a consitantly (usually mildly) elevated wbc and elevated neutrophils. So any ideas would be greatly appreciated. Unfortunatley the CF doctor I saw as a child has retired (Dr.Bill Wilson in Ontario) or I would have tried to contact him. Thanks

Sorry for the late reply. I have seen a hematologist. I have had the Ana test and all autoimmune tests they could think of, also test for chronic leukaemia and mastocytosis. All came back fine/normal. I have actually been diagnosised with type 2 diabetes.....it acts very strange though after 5 years my a1c is still 5.8 and I am on no medication. I have the odd high sugar of 15 max but that is very rare. I was in the hospital last month for gallbladder removal (over 100 stones and it was my first attack) and was actually having problems with low sugar while there. I have an appointment in September with my local cf clinic in Hamilton. Thanks for the ideas

Thank you for your reply. I have since got the medical file from when I was first diagnosed and am more confused now. My sweat test ( I had 3 done as an infant ) were between 62-95 and the duodenal aspirate came back with no tryptic activity and no bicarbonate detected. I was culturing staphylococcus and enterobacter. By the time I was 8 or so they were questioning the diagnosis and did 2 more sweat tests which were in the high 30's and then the high 40's. I am going to ask for the genetic testing, but feel it has to be something that was mimicking cf. as you said i would love a firm negative. I guess time will tell. Thanks again

Hi there,

Sorry to hear you now have a definite CF diagnosis after all that confusion aswell. I hope you are OK and feeling well despite the diagnosis.

I see you were also diagnosed with diabetes, the fact it was acting "strange" could be related to the CF. CF related diabetes (CFRD) is neither type 1 or type 2 but some sort of strange version that takes characteristics from both.

Hopefully with a proper cf clinic they'll be able to address things like this and find a way to support you with it.

All the best

Gem

Edit:looked back and seen someone already gave you the information about CFRD.

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Moderator of the Cystic Fibrosis forum

Hey, I'm Gem with CF, age 28 and diagnosed at 2 years old. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Myopathy

Post Edited (Gemsi) : 2/18/2015 3:28:02 AM (GMT-7)