Could I have CF?

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Lannister

New member
I've had what has been diagnosed as horrible allergies my entire life. My nose is completely clogged 365 days a year, to the point where I basically can't breathe through it. What's worse is I have this horrible post nasal drip. It's so thick and copious that I feel like I am constantly choking. I'm coughing and sniffling literally every second of every day. Although I do exercise, I have a hard time breathing when I run. I often feel like I can't breathe deeply enough. I feel like I constantly have a sinus infection, I've had probably 2-3 a year for as long as I can remember. I've had my lung capacity tested before to see if I had asthma, and the doctors said it was fine.

I've tried literally everything to reduce my symptoms; nothing I've tried has made any difference at all. I take antihistamines every day but they don't help. I did allergy shots for three years, at which point my allergist gave up because they weren't helping me. After the shots, I seemed to be allergic to fewer things according to my allergy tests, but my symptoms just get worse and worse. My doctors have basically said they don't know what the issue is, and that there's nothing they can do to help me.

In addition, I also have digestive issues. I came to the conclusion that I had celiac disease (even though IgA blood test was negative) so I went off gluten, which seemed to help for several months. But in the last month or so, my digestive symptoms (painful bloating, constipation, etc.) have started to come back. I have no idea why, and can't link the symptoms to any specific foods.
I don't know if this is relevant, but I've also been diagnosed with PCOS, and I have read that CF can cause reproductive issues. But I'm not sure if PCOS qualifies as a "reproductive issue". Just thought I'd mention it.

Is it possible that my symptoms could be caused by CF? Everyone I mention this to thinks I'm crazy, and to be honest, I kind of do too. Based on what I learned in bio and have read on the internet, CF is a pretty serious disease, whereas my symptoms, although they make me miserable, don't seem to be life-threatening. But I've also read that you can have mild CF, and since I'm kind of desperate to figure out what's wrong with me, I thought I would investigate that a bit more. If anyone has any input on this, I would greatly appreciate it.
 
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Aboveallislove

Super Moderator
It could be cf and there are many diagnosed later in life..one posting recently of a lady I think diagnosed at 77. I'd ask your gp for a referral to a cf clinic for a sweet test to just rule it out. Also...you could do a couple home things ...after running lick your arm...is it really salty? Put your hand in water...do your fingers wrinkle in 3-5 minutes? Two things that indicate cf but not all so cf have.
 
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Lannister

New member
Aboveallislove said:
It could be cf and there are many diagnosed later in life..one posting recently of a lady I think diagnosed at 77. I'd ask your gp for a referral to a cf clinic for a sweet test to just rule it out. Also...you could do a couple home things ...after running lick your arm...is it really salty? Put your hand in water...do your fingers wrinkle in 3-5 minutes? Two things that indicate cf but not all so cf have.
Click to expand...

Thanks for the response. My sweat is definitely salty, but I'm not sure what qualifies as "really salty". Occasionally the smell burns my nose, and if it drips into my mouth it definitely tastes like salt water. I just assumed that was how it was supposed to taste. I'll try the hand in water test later tonight and post the results here. Thank you! Do I have to get a GP referral to go to a CF clinic? The thing is, my doctors kind of think I'm a hypochondriac at this point, because I have so many health complaints about my "allergies" and my digestive symptom and so on, but there never seems to be anything wrong with me. So I'm not sure they'd take me seriously if I asked for a referral to a CF clinic. I'm not sure my parents would take me seriously either, which matters since they'd be the ones paying for the appointment.
 
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Lannister

New member
Also just for reference, my hands definitely were not dry (I'm kind of addicted to lotion and lip balm because I hate having dry skin), and I wasn't dehydrated (I drank probably at least 500 mL of water with my dinner 30 minutes ago).
 
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Printer

Active member
The short answer is, yes you COULD have CF. You should go to an Approved Cystic Fibrosis Clinic and see a CF Specialist. If your PCP won't give you a referral, get another PCP.

Good luck,
Bill
 
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Aboveallislove

Super Moderator
well what you say is similar to what you what...yes, it could be cf. You kinda have to know to compare but I know if I kiss our son I immediately taste salt after just a tad of exercise. but none of that gives you an answer. As Printer said you need an appointment at an accredited cf center and most will not take you for a sweat test without a referral. I guess you could pose it to your general as you know that it seems you think something is always wrong, but it is and you'd like to rule out CF as a possible cause since you are having both gi and sinus issues. most doctors still think of it as an infant/childhood disease and now a days that is no longer proving to be the case as many late diagnosis are coming out. and many think if your lung function is okay it isn't cf, but many with cf have sinus issues too. as printer said, if he won't give you the referral you'll need to find another. Another option would be to have a blood test done ordered by the general doctor to see if you carry any of the typical mutations. It could be you get a hit with one and that might give you more cause to see if there is a second mutation or to get the sweet test.
 
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MichaelL

New member
I agree with the comment above -- you could have CF. I was diagnosed at age 34. My mutations indicate a more mild case, which is common for people who are diagnosed as adults. I didn't really have GI symptoms for a long time, but I've started to have them in recent years. Although I am pancreatic sufficient, I still have problems with bloating and constipation.

In terms of testing, some mild cases (like mine) test negative on the sweat test. You might want to ask for genetic testing if you start with a sweat test and it comes back negative.

I have minor sinus symptoms, but nothing like yours. If you aren't already, I would recommend a saline rinse daily. I mix 1 1/2 cups of water with 1/2 teaspoon of baking soda and 1 teaspoon sea salt. I then use a ear syringe to clean out my sinuses each morning. I use one syringe full in each nostril. My ENT that got me started on this told me not to do it within a few hours of bedtime since it take a while for all the water to work its way out.

Good luck -- it can be very frustrating not knowing why your sick.
 
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Lannister

New member
Thank you for your responses, everyone! When I go back to my home university in January (currently studying abroad) I'll go to health services and see if one of the doctors there will give me a referral to our University Hospital's CF clinic.

MichaelL said:
In terms of testing, some mild cases (like mine) test negative on the sweat test. You might want to ask for genetic testing if you start with a sweat test and it comes back negative.

I have minor sinus symptoms, but nothing like yours. If you aren't already, I would recommend a saline rinse daily. I mix 1 1/2 cups of water with 1/2 teaspoon of baking soda and 1 teaspoon sea salt. I then use a ear syringe to clean out my sinuses each morning. I use one syringe full in each nostril. My ENT that got me started on this told me not to do it within a few hours of bedtime since it take a while for all the water to work its way out.

Good luck -- it can be very frustrating not knowing why your sick.
Click to expand...

So do I have to ask for a sweat test before they will perform a genetic test? If mild cases can result in a negative sweat test, should I just do the genetic testing first? I would assume the genetic testing is more definitive.

As for the saline rinse, my mom is really big on that stuff so she used to force me into using the neti pot. Unfortunately, I'm so congested that the water, instead of coming out the opposite nostril, just comes right out my mouth, which makes me feel like I'm drowning. It's kind of awful, so I gave up on it. And even when it did work (once, and I had to do it literally ten times before the water came out the other nostril), it only cleared my sinuses for 5-10 minutes, then all the congestion was back :(
 
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Melissa75

Administrator
I think your doctors/you can fairly easily request a sweat test and genetic screening for the most common CF mutations. It's just that if either of those is inconclusive or negative that the further testing (full genetic sequencing) is more complicated to obtain. What I mean is that if your sweat numbers are negative or borderline and/or you don't have those common CF mutations, your doctor has to be able to justify ordering you the more expensive test. Things that build the case are abnormalities on sinus CT scan, lung x-ray, and lung function tests; a history of gastro-intestinal problems and being underweight; and sputum cultures of bacteria and fungus that aren't common in the general population.

Your sinus situation sounds serious and like it needs major attention regardless of what the CF investigation yields. I really want to urge you to give sinus washes another go. Try the squirt bottle rather than the pot. You can lean your head forward, get some force with the squirting, and have the water come forward out your mouth in a less drown-y way.

I can't speak too highly of how this helps. Although I'm still a little clogged all the time and a mouth breather, I AM much better off. I've even gotten over sinus infections without antibiotics, just by doing washes 3-4 times a day. The massive dark and sometimes bloody stuff that comes out--wow. The thought of it staying in there is pretty appalling and certainly explains the headaches and pressure.

Best of luck in your search for answers.
 
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Helenlight

New member
I agree with the above statements about getting checked out- you want to get to the bottom of this, CF or not. With quite a lot of experience in allergies I'd also recommend a food diary for a few weeks. I had similar symptoms to you when I was younger and it turned out to be dairy that was the culprit. Fully clogged nose and throat, horrible! Lung wheezing. I also got tonsil stones and milia (milk spots) on my face when regularly consuming dairy. It is very difficult to diagnose because it's not an easily identifiable anaphylactic style allergy, more of some kind of intolerance? Just thought I'd mention that just in case it's something similar. A good naturopath can guide you through an elimination diet if you think it could be food related. Oh- the antihistamines- they will be drying up/thickening your mucus, if you don't think they are helping, perhaps stop them for a while under supervision.

Good luck and please keep us updated!
 
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mommof2b1

Guest
I was diagnosed at 32 sinus problems all my life bronchitis here and there and constipation. At age 28 I had my 1st case of pancreatitis and it took having it a total of 5 times before they finely grated me. My sweat test is normal. You need to have a Dr run DNA testing
 
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believingjesus

Banned
I would ask your doctor for a referral to get a sweat test. My son has CF and has always "tasted" salty. Before he was diagnosed his doctor treated me like I was crazy too and also misdiagnosed him with irritable bowel syndrome which he told me over and over he would most likely grow out of, then said it wasn't that but celiac disease and I changed his diet so no wheat, ry, barley or oats and did that for awhile. Then my son told me one day his stomach hurt really bad. He had got skinny that year and I had a doomed feeling he had cancer or something. Then I dropped off another stool sample and blamed it on my husband and said he really wanted it tested. Then he finally said he suspected CF. I had never even heard of it at that time. Unfortunately it was CF but he is almost 25 yrs. now and doing fine. He was 4 1/2 when finally diagnosed.
 
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