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Trikafta causing Disaccharidase Deficiency?
Hi All, since starting Trikafta I’ve had non stop gut issues (frequent loose stools, pain, bloating) for over 3 years. I’ve worked with my CF specialist, Gastro drs, dieticians, played with Creon dosages (up and down), colonoscopy, endoscopy, blood tests, different diets, fibre, water intake, keeping a food and symptoms diary, antibiotics for SIBO, probiotics etc etc… and I still haven’t found anything that has given me any sort of meaningful improvement.
The only test that showed anything was an endoscope biopsy that showed that I had Low Disaccharide enzymes (sucrase, lactase, and maltase). I tried a low disaccharide diet, lost 12kg and didn’t see any sustained improvement in my symptoms. My GI dr also dismissed the results as a false positive.
However I’ve recently had a fecal microbiota transplant (aka stool transplant) to help repopulate the good bacteria in my bowel after 40 years of antibiotics. This hasn’t made a huge improvement of my symptoms. Now my dietitian wants me to try the low disaccharide diet again with the hopes that my bowel will tolerate it better.
I’m concerned that it’s Trikafta and how much my digestive system has changed because of it that’s causing my symptoms.
FYI I’m a 42yo pwCF DDF508 – taking a modified dose of Trikafta (single orange pill once a day)
Has anyone else been diagnosed with low Disaccharide enzymes?
For those of you who have experienced bad chronic GI symptoms since starting Trikafta where the usual suspects (creon, diet) haven’t helped, what have you done to manage your symptoms?
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4 Replies
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Hi Jono,
Admittedly, I do not take trikafta, but I am aware that it CAN create GI issues. My version of CF has a lot of GI issues as well. Before switching to that diet, I would talk with your CF team about stopping trikafta for a while. On another note, I know what helped me was switching from Creon to Pertzye. Pertzye is a stronger Creon and has helped me gain and then maintain some weight. I’d also look into trying that and seeing if it can be helpful.
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Thanks for the feedback. I’ve actually had a few people online suggest to me to change from Creon to another brand of enzymes. Unfortunately I’m from Australia, and I’m not sure if any other brands are available here. But I’ll bring it up with my CF team and see what they can suggest.
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Best of luck! I hope there are more.
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Cheers. Thanks again for replying William. Appreciate it!
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