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Cystic Fibrosis Message Board


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I wrote previously (yesterday) about my son's work-up for CF. His sweat test was negative, so we're going to ask for a genetic profile. However, after reading through a bunch of the threads on this board (my son's respiratory symtoms are a perfect match for CF, making us very suspicious), I am suddenly wondering about myself.

I don't have any respiratory symptoms at all, except that whenever I get sick, I get VERY sick. However, that isn't more than 1-2x a year, usually,and I don't have a history of chronic pneumonia, ear infections, or anything like that. I just get really bad chest colds.

However, is it possible to have only g.i. symptoms with CF? For 20 years, I have had unrelenting diarrhea. I'm 5'4" tall, and a skinny 100 pounds. Every dr. has written it off as irritable bowel syndrome, but I've often thought it seems worse than that. I have a tough time gaining weight, and lost my pregnancy weight with both kids within two weeks of birth. I am hungry all the time, but can't eat much because of the abdominal pain I get about 10 minutes into every meal, followed by diarrhea. My celiac test was negative, and I don't have any food allergies. I'm only asking this because my son is being worked up for CF. My daughter underwent 4 exploratory surgeries for enexplained respiratory issues that we eventually had to accept were just that: unexplained. Now, I'm beginning to wonder if perhaps there is more here than we thought.

Can you have CF without any respiratory issues? Can CF ebb and flow--my daughter will get so ill she'll be hospitalized, but then go several months without any problems. My son is plain sick all the time.

Thanks
[QUOTE=Kian'sMom]I wrote previously (yesterday) about my son's work-up for CF. His sweat test was negative, so we're going to ask for a genetic profile. However, after reading through a bunch of the threads on this board (my son's respiratory symtoms are a perfect match for CF, making us very suspicious), I am suddenly wondering about myself.

I don't have any respiratory symptoms at all, except that whenever I get sick, I get VERY sick. However, that isn't more than 1-2x a year, usually,and I don't have a history of chronic pneumonia, ear infections, or anything like that. I just get really bad chest colds.

However, is it possible to have only g.i. symptoms with CF? For 20 years, I have had unrelenting diarrhea. I'm 5'4" tall, and a skinny 100 pounds. Every dr. has written it off as irritable bowel syndrome, but I've often thought it seems worse than that. I have a tough time gaining weight, and lost my pregnancy weight with both kids within two weeks of birth. I am hungry all the time, but can't eat much because of the abdominal pain I get about 10 minutes into every meal, followed by diarrhea. My celiac test was negative, and I don't have any food allergies. I'm only asking this because my son is being worked up for CF. My daughter underwent 4 exploratory surgeries for enexplained respiratory issues that we eventually had to accept were just that: unexplained. Now, I'm beginning to wonder if perhaps there is more here than we thought.

Can you have CF without any respiratory issues? Can CF ebb and flow--my daughter will get so ill she'll be hospitalized, but then go several months without any problems. My son is plain sick all the time.

Thanks[/QUOTE]

Hi

Because CF has so many different degrees it is possible have more problems with g.i. than with lungs.

A friend of mine wasn't diagnosed with CF until he was 32. He had few chest issuses as he was growing up but it was always put down to Broncitis or asthma.

Over the years the lungs do gradually get worse and it's then that some people are diagnosed,

I don't think it would hurt to ask them about you while you are there. I am from Australia and when my daughter was diagnosed they genetically tested us too.

I know this must be a very difficult time for you but just remember that you aren't alone. You only have to read these boards to see that. Thinking of you
Good Luck

Wendy W





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