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19592380 tn?1480606612

Cystic Fibrosis, could I be diagnosed as an adult if I wasn't tested as a child?

I'm a 23 year old female who has been having chronic health issues for the last ten years or so, but still I have not gotten an actual diagnosis. I have bowel and stomach problems, such as alternating diarrhea and constipation, severe bloating, constant nausea, greasy and fatty stool and gas. I also experience chronic headaches, have problems with my joints swelling and becoming weak, sometimes making it hard for me to walk, a constant throat clearing and post-nasal drip like symptoms and experience random spells of lightheadedness and dizziness. The first incident I recall when most of my health issues seemed to start was when I was around 17, I woke up one morning and for some reason was unable to walk due to heaviness and severe pain in all of the muscles in my legs.

I've had a lot of tests done to try to figure out what is wrong with me, and I'm so beyond frustrated with trying to get a diagnosis. I've had many blood tests done, including blood tests for autoimmune diseases. I see a gastroenterologist who has done a colonoscopy and an endoscopy but has found no answers for my GI problems. I see my PCP for the chronic issues I have for my sinuses, but none of them seem to know. I contacted my parents to go through my family history when it comes to health, and they mentioned that when I was a child there was concern that I had cystic fibrosis due to the fact that I had swollen joints sometimes and I didn't want to walk. Because I was born in Pennsylvania in 1993, newborns were not being tested for CF here at that time. The issues must have resolved somewhat as I was never tested. I remember in my childhood having a lot of problems with nausea, stomach pain, ect., but was never given any answers.

My question is that with all of these tests that have been done and with everything that has been ruled out, is there a chance that I could still be diagnosed with cystic fibrosis at this age now that I'm starting to show more symptoms and see a general decline in my health? I genuinely know that something is wrong with my body and I just want to figure out what it is so I don't have to feel sick every day. Out of all of the blood work I had done, only one was closely-related which was my level of Lipase. I had a level of 7, but according to my PCP that level too lower and is "in the red" compared to what they have as a normal range. Would you recommend asking my doctor to perform further tests for this?
2 Responses
1530171 tn?1448129593
That sounds low, however, when lipase levels are chronically low, deficiencies in the fat soluble vitamins A,D,E,K would show up on your blood tests, as well as high cholesterol & triglycerides (lipase drives fats to get absorbed in the muscles, so when lipase is low fat stores go up raising cholesterol and triglycerides).

Do you have the results of your blood work?

At any rate, people with cystic fibrosis have 2 to 5 times the normal amount of sodium and chloride in their sweat.
Have you had a sweat test done?

Please let me know.

Best wishes,
Niko
1 Comments
I have not had a sweat test done yet, but I plan to have one done soon. I spoke to my family doctor and she said she doesn't do that test herself but that I need to see a pulmonologist who can assist me and provide the test. She also set up a chest x-ray for me to get done. I looked through my blood work but didn't see any testing for vitamin levels.
1530171 tn?1448129593
I was trying to find a term to describe the medical system's gaps/faults and doctors' negligence which does not quite fits the definition of Iatrogenic
(of or relating to illness caused by medical examination or treatment).
None-the-less, this pertains to millions of patients like yourself, you may be unnecessarily suffering because of the above scenario.
Should you have any chronic deficiencies in A,D,E and K you would certainly be ILL to some degree!
These are essential vitamins that keep your bodily systems and organs functioning well and when their levels are low, naturally you will experience dysfunction which can lead to serious disease processes.
Consider getting this ruled out asap!

Have proper thyroid testing by asking (and insisting) for free T3, free T4 and reverse T3.
Also  anti-TPO & TgAb. to rule out Hashimoto's.

A common sign for CF is salty skin, so just ... lick your skin and if your skin tastes very salty, this is a strong CF indicator. Try several times over a few days to verify.

Best wishes,
Niko
  
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