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sucrose intolerance.
I had c. diff for a year and after 2 negative cultures I still had horrible bloating after meals . I finally had a sucruse breath test and I tested sucrase defficient . The question is now what. It looks like I can only eat green veggies,salad and protien.Will I survive on this diet. I certainly can't afford Sucraid ,the needed enzyme to digest sucrose into glucose and fructose. The drug is $8084.00/month . Help...anyone with this ailment ?
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Sorry, I have no answers, but am curious about your breath test. I'm reading about people having different kinds of breath tests, and wondering where you had your testing/ are getting treatment? I have a diagnosis of SIBO from endoscopy culture, which isn't exactly the same as c. diff, but the 2 have some similarities. And yikes, that drug price, that's awful. Who could afford that.
I know from my research that sometimes SIBO (which can be a variety of different bacteria) can sometimes start as a particular infection, i.e. c. diff or e coli, and they give antibiotics that kill those bugs, but that can cause an overgrowth of some other kinds, or other kinds are still causing trouble - hence your continuous bloating. I know this seems to be an area still wrought with controversy (SIBO, etc. ), but I have read sources that say that diet will be of no use if you don't get rid of the offending bacteria with antibiotics. Have you been tested for SIBO? Were the cultures from your stomach?
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2 ReactionsHi there ,at least sibo can be cured with the right antibiotics and probiotics. The breath test (kit) was supplied by my doctor. I did the test (thought it was a waste of time) and mailed it to the lab the results came back showing 0 sucrose activity. I also did the sibo breath test which came back negative. There are several types of breath tests. Sibo breath test looks for hydrogen in the breath meaning positive for sibo. You had an actual culture that is a definitive diagnosis. Take the antibiotics and ask which probiotic to take and when. The breath test for sucrose intolerance is as accurate as the sibo test. The sucrose test measures hydrogen methane in the breath. Thank you for responding
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1 ReactionIs there anything natural that may be able to help with GSID? I am told that I can use honey to sweeten drinks but is there anything else besides a special diet. I am hoping for natural herbs or medicine.
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1 ReactionHi @ceciliat, welcome to Mayo Clinic Connect. While we wait for @sue6408 @elle1233 @lelia @saucy and others to join, I did a quick internet search. According to this website https://www.csidcares.org/treatment/sugars/, honey is tolerated only by some people with genetic sucrase-isomaltase deficiency (GSID) or congenital sucrase-isomaltase deficiency (CSID). Note the website is by the manufacturs of Sucraid® (sacrosidase).
You may also be interested in this related discussion:
- Fructose Malabsorption https://connect.mayoclinic.org/discussion/fructose-malabsorption-1/
I recommend reviewing the resources listed on this website from NIH https://ghr.nlm.nih.gov/condition/congenital-sucrase-isomaltase-deficiency
Cecilia, what foods can you tolerate?
What is SIBO?
I have recently been tested for sucrose intolerance and test indicated abnormality. Haven’t see the doctor for follow up visit yet but he prescribed an enzyme called Sucraid which, as another person mentioned, costs $8000+. No thanks. In addition, many of the dietary limitations for sucrose intolerance conflict with my IBS Low Fodmap diet. Combined with the GERD diet, this is getting too crazy.
Dies anyone know of a supplement for sucrose intolerance that a real person would actually buy and use?
Can you offer which antibiotics you have heard are most useful?