I HAVE BEEN ON THE GLUTEN FREE DIET FOR FOUR DAYS AND HAVE HAD MORE GAS AND EVEN MORE BATHROOM TRIPS THEN I HAD BEFORE. I HAVE J POUCH FOR SEVERAL YEARS LIVING ON ANTIBIOTICS, NOT PUCHITIS EVER, BUT HAVE HAD SEVERE STOMACH DISTENTION BAD GAS AND DIARREA FOR EVER, THE ANTIBIOTICS WORK A FEW DAYS, BUT IT ALL STARTS OVER AGAIN. I SO THOUGHT THE GLUTEN FREE DIET MIGHT HELP ME, BUT FEELING WORSE?? MY DOCTOR NOR I DON'T KNOW WHAT TO DO FOR SOME REIEF, ALSO HAVE TAKEN EVERY MEDICATION AND SPEND A FORTUNE, BUT TO NO AVAIL. HELP
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A gluten free diet isn't likely to be helpful to most people, though some seem to get benefit. A *very* low carb diet seems to help more people than gluten free. The advocates of gluten free are very enthusiastic, but the evidence doesn't support the practice in most cases. Since you stated that you've taken every medication I can't offer you any suggestions there, except to point out that of course you haven't taken every medication, though I bet you've taken plenty. Good luck!
Hi Scott-Thanks so much for your response, and your right I have not tried all medications, but the ones most people try with my problems. If you have any suggestions it would be certainly appreciated. Again, thank you Scott.
MIKEEY, I'd be happy to think about your medication options if you take the time to describe what you've tried, and what your doctor thinks you have. It won't help you if we start guessing.
Also, remeber that when you removed gluten from your diet you almost certainly *added* a bunch of things. You're more likely to be sensitive to something new than in need of gluten.
Scott- Again thanks, he believes I might have bacterial over growth and inflamation and has tried so many different med. , these are the ones I remember, cipro, keflex, augmentim, flagyl(made me sick) dosxycycline, tindamax, clidinium, clonazepam ,dicyclomine,hyoscyamine, and lomitol when I go out for the day, enteragam, recently went off discyomine it stopped helping me. Wow, so many the one antibotic that still helps a bit and I take one daily is the augmentim. Looking at these I can't believe all I have taken and many I can't remember. I feel like I will never feel better.
SIBO can require a few months of treatment - I was on doxycycline for several months when I had SIBO, and it eventually cleared up. Have you continued treatment long enough? A *very* low carb diet at the same time can be a big help: no sugars, no starches, no special exceptions (like fruit) because you think it's healthy. For some of us such a diet is very difficult to maintain. If you got good results you might be motivated, though.
Have you tried VSL? The evidence is clearer for pouchitis, but I used it through my SIBO treatment. And it gives some people gas...
Gassy foods (cabbage, beans, soda) will add to the trouble, of course, even if they don't add to the SIBO. Eating too fast can lead to swallowed air, another source of gas. And if you're using any fiber supplement see if you can tell if it's increasing gas - some of us get that reaction to some supplements.
Best thing I ever did
It depends though what your eating
Some people think eating g-free processed foods will help. It's the worst thing to many chemicals
Stay with fresh foods nothing processed, it's hard but you will probably feel better
Meats, fish, potatoes, veggies
Hi Scott- Tried doxycycline for quite some time, VSL gave me more problems, have tried different pro biotics, that did not seem to help me. For the past two months I have been on a low carb and sugar free diet, even lost 11 pounds, which I really did not want to lose. I think I might ask my doctor if I can again try doxycycline, maybe it might help, its possible I was not on it long enough. I really felt no difference on the diet, I sometimes feel like I just can't fight anymore, I get so discouraged . Thank you so much for all your advice, its so appreciated Scott. I am in NYC curious where are you located? Take good care,
Best Regards, Michael
I'm also in NYC, do you have good GI doctor?
I'm in need of one..if you have any suggestions id appreciate it
If you need a great GI/ J Pouch specialist in NYC you have one at Mount Sinai/Beth Israel. He was my specialist at Yale for 5 years until he left for NYC where he was promised to be part of a Pouchitis clinic (and maybe the eventual head of it?). Cleveland Clinic trained, and mentored by Dr. Bo Shen- here is his profile:
When he left Yale he left many sad J Pouch patients behind in Connecticut.
C.T.Barrister- Thank you so much for this information, however, the doctor does not accept my insurance , I am on Medicaire and would not be able to afford him if he does not accept my insurance. I like my current doctor but feel I need another opinion and was going to post it on the j pouch group to see if anyone living in NYC knew of a very good doctor who would accept my insurance. Again thanks for much.
Hi Yvonne- I have a good doctor but I have gone to him for so many years and was actually looking to get another opinion since we have tried so many avenues and feel maybe another doctor might have some other ideas. My doctor is very good , but as far as I know he is not accepting any more patients, if I hear other wise, I will certainly contact you. Thank you.