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Hello! Wondering if anyone has had a good experience with a GI doc in Los Angeles. I'm at the USC CF center, but from what I've seen I don't know if I have a lot of confidence in their GI department. UCLA looks more promising, but I don't know whom specifically to look into. Any...

Actually, I did experience something similar. My CF problems are almost all digestive, but I've never had a problem gaining weight. When my digestion is off for whatever reason, I do notice I gain a few pounds, especially around my stomach. When everything is working smoothly and I'm eating...

I started having very uncomfortable GI reactions, but the opposite of what other people were reporting: bloating, constipation, etc., not loose stools. I just stopped it on Monday to see if the symptoms resolve.

Warning to the faint of heart...I'm gonna talk about poop. Has anyone else had constipation while on Orkambi? A bout of constipation isn't uncommon for me, but I'm wondering if it has to do with the drug since the timing is so spot on. The only think I can think is that maybe the Orkambi is...

I'm on day 8 now, and thankfully things have gotten way better. The only side effect I have now is fatigue, but it comes and goes and I've still been able to get to the gym a bit. I've always been extremely lucky with my CF and it's never been too bad, so if the side effects dissipated so...

Wow, that's really interesting. I haven't been able to get my period naturally for five years (since I was in high school), and I just heard at the CFRI conference that CFTR can affect the hypothalamus, which is essentially your brain's control center for hormones. There are of course other...

I'm on day 2 of Orkambi and yesterday, about 3-3.5 hours after taking the first dose, I had a strange feeling almost like an allergic reaction. My throat got tighter, I got hot and started sweating in an air conditioned movie theater, and I had a hard time taking deep breaths. It passed a little...

This isn't talked about very widely, but you may have low stomach acid that could be affecting your digestion. I've found recently that taking HCl (hydrochloric acid) supplements with Pepsin can help a lot, as can having a little bit of apple cider vinegar in water before a meal (which can help...

Have you tried adjusting your to diet to be more anti-inflammatory? Even if you don't have digestive problems, if what you're eating is causing inflammation, that can manifest anywhere in your body. There's a lot of information online about anti-inflammatory diets. If you eat refined foods, cut...

If you're looking for a substitute for dairy products, try coconut oil / milk / butter. Especially the butter—it's very creamy and completely addictive. I would recommend cutting out gluten first though (and cutting down on processed stuff in general), because that's more likely to be the...

I used to have bad stomach pains, but thankfully they're rare now. I agree with the suggestion to try probiotics (and different brands if one doesn't work, because each one has different strains) and especially to try diet modification. Try cutting out processed foods and gluten (including...

Hi everyone! Last month I started a blog, Sardines on the Subway, about my experience using a Paleo diet to deal with my CF. My latest post is about mindset and how you can mentally prepare for any health-related changes you want to make. I could use some more eyeballs, so I'd really appreciate...

I would check out Chris Kresser and his info on GERD and other GI problems. You can start here: http://chriskresser.com/the-hidden-causes-of-heartburn-and-gerd. Hope that helps a bit!

Hi everyone! I've launched a new blog, Sardines on the Subway, about my experience using a Paleo diet to treat my CF symptoms. I'm only a few posts in but I'd love for more people from this community to take a look: www.sardinesonthesubway.com. And leave a comment to let me know what you think...

Hi everyone! I've launched a new blog, Sardines on the Subway, about my experience using a Paleo diet to treat my CF symptoms. I'm only a few posts in but I'd love for more people from this community to take a look: www.sardinesonthesubway.com. And leave a comment to let me know what you think...

As the last poster said, I'll sometimes skip a treatment in favor of working out if I'm strapped for time. I know the way things affect me well enough to know that for me, that one workout will be better for my health (and definitely my mindset and mental health) that day than sitting and doing...

I know it's been a while since the original post, but I wanted to add my two cents. Recently there's been a flurry of information in the media regarding SIBO, small intestinal bacterial overgrowth. I found studies on PubMed showing that cystic fibrosis patients are much more likely to get it...

You can definitely eat high-carb, but just not refined carbs. At first, you could try just taking out gluten and all processed / refined grain products, e.g. gluten-free snack products and breads. I don't think everyone must cut out all grains, but it's a matter of experimenting and figuring...

Bump...plus, another question I have. Do CF'ers tend to have a hard time making their own cholesterol? The more I read about it, the more I hear people say that the vast majority of our blood cholesterol is not dietary but is that produced by our livers and small intestines.

I'm exactly the same! I'm still hopeful I can figure out what's causing this and maybe see some improvement...