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Posted By : meech - 6/20/2014 11:20 AM
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

Posted By : kberaun - 7/27/2014 6:42 AM
Sounds like doc needs to run an ANA and titer. There could be some other auto immune disorder going on. Recheck for CF.. there are some really mild cases and not diagnosed until people are in their 40's and 50's.

Also have blood sugar checked.

Posted By : meech - 8/3/2014 7:42 PM
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 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

Posted By : Tayra - 8/10/2014 3:45 PM
If your sweat tests are iffy I'd suggest genetic (blood) testing. Theres many variations in the genes that can cause CF, and they dont all present the same way....At the least you'd be ruling it out if you get a firm negative :) Your clinic can get you set on that path I hope, but you may need to prompt them!

If it is CF-ish, we can have mucus blocks in our pancrease that prevent insulin from getting out (its called CF Related Diabetes) - quite a pain, we can bounce around, get high when we're sick, then normal during well periods....also pain and heat can affect the sugars too, so lows during a ghospital stay wouldn't be out of the question either...Hospitals never feed you the same food you eat at home, so its "different" and body reacts to that and stress....Can be a frustrating mystery to try and solve..... *hugs* from BC!

Posted By : meech - 8/10/2014 7:56 PM
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

Posted By : meech - 2/17/2015 11:08 PM
I realized I never updated here. I have since been diagnosed with cf again through genetic testing this time and sweat test (came back at 74) and am now being seen at a cf clinic.

Posted By : Gemsi - 2/18/2015 4:25 AM
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


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

Posted By : meech - 2/18/2015 7:15 AM
Thanks, they have decided that my diabetes is CFRD and started me on novorapid.

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