Hello. I'm a bit stumped right now. Maybe you can help me figure out what to do next or change?
History:
I've been extremely lactose intolerant since my 20's. In addition I've always had mild reactions to food that couldn't be explained by lactose intolerance. Then last year numerous other symptoms hit. May of 2015 I had a overgrowth of blastocystis hominis which resulted in diarrhea/very soft stools. I've had difficulty being solid ever since. The blastocystis is gone and I've not tested positive for any other infections, but in the process of figuring out why I felt so bad I've seen a gastroenterologist and a rheumatologist and been diagnosed with Sjögren's syndrome. Besides causing body aches and messing up my mucus membranes, it's doing a number on my gut.
What I do now:
4 doses of Benefiber daily (5 allowed)
2 doses of Enteragam daily (4 allowed but it's expensive)
Follow Heather's safe food list pretty strictly per doctor's directions. She told me to use it as an elimination diet but I've barely progressed past the first safest list. I can barely eat anything from the "moderate list - veggies, fruits, beans, etc... after soluable fiber without my stool getting soft again, especially beans and soy and the dairy substitutes.
Yoga and Meditation
Plaquenil for my Sjohren's (after fiber only)
Aleve for aches (after fiber only)
Omega 3 for dry eyes and mood (after fiber only)
Probiotics
Lansoprozole for GERD
Rhodiola rosea for aches and stamina
5HTP at night for aches, sleep, and stamina
I was solid this summer for longer than ever in the last year and a half (a month or so?). But getting my period or any stress and I go straight back to very soft stools or diarrhea. Then I take a bit of Imodium. Right now even that is only helping as long as the Imodium is in my system. It's gotten bad enough that the gastroenterologist has me in Xifaxin which usually helps but it's not helping enough this time.
Questions:
How long can I eat mostly rice, potatoes, bread, the safest foods.... with a little white meat chicken and a fruit or vegetable each day without suffering nutritional problems? It's been about 6 months now. I'd like to think going down to just bread and water for a couple days will solidify me but eating only the safest foods doesn't seem to be enough right now.
Is there anything I'm doing that seems like an issue? What could I try next to make it better? (I recently got some fennel tea too.) What foods from the second list are the ones to start adding? And why can't I tolerate beans since they're high in soluable fiber? I'm not as concerned about gas, but about the diarrhea they cause, even cooked without fat
Does anyone else deal with an Irritable Bowel caused by Sjogren's or another autoimmune disease? What helped you?
Thanks!
Karen
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IBS-D and Autoimmune/Sjogren's
