Wondering if anyone familiar with SIBO diet knows if the diet is the same for sibo patients with ileocecal valve intact and for those without ileocecal valve....thanks
I agree with tiss that the doctors don't seem to really know the best diet when it comes to missing the ileocecal valve (unfortunately), but I've been working with a GI dietitian for about a year and she has been really helpful regarding diet. Even though she doesn't know the perfect diet for people like me, she does attend lots and lots of GI conferences where they go over the latest research on SIBO and other tricky gut issues. Because of that, she's super well informed so I usually trust her to at least tell me what is and isn't backed well by current scientific research. She said that right now the best evidence-based approach for treating SIBO is still the low FODMAP diet, plus antibiotics and meal spacing. That's what I've been doing lately, and it actually seems to be working pretty well so far (thanks to @tiss for the info about going back on Rifaxamin indefinitely, which I think is a big part of why it's working).
At one point, I asked her about the Specific Carbohydrate Diet since I read a lot about it and it sounded really promising to me, but she said it wasn't based on good evidence. I tried it anyways and it didn't work, so I'm guessing she was probably right. I also asked her about the medicine Atrantil since it sounded really promising too, but she said the research wasn't good on that either so I didn't get it. It can be really hard to figure out what's a fraud or not sometimes...I've definitely spent money on some things out of desperation that ended up being totally bogus.
I also asked her who is the best, most trusted person in the field right now in terms of research on all this stuff, and she said it's Dr. Mark Pimentel, out in California. It looks like his lab has been doing a lot of groundbreaking research in these areas: https://www.cedars-sinai.edu/Research/Research-Labs/Pimentel-Lab/ He also has a Twitter page, where I saw some pretty interesting success stories of people with weird/unique gut issues that he was able to help. If the Rifaxamin and low FODMAP diet stop working for me, I may try to see if I can find a way to go see him someday, though I'm not sure how seeing a doctor out of state would work. Unfortunately there don't seem to be many doctors in general who are well-versed in SIBO or missing ileocecal valves at all. I asked my GI doc here if there were any local SIBO specialists or anything he said no 🙁
Anyways, sorry, long post, but just thought I would shared what I've learned so far 🙂 !
I agree with tiss that the doctors don't seem to really know the best diet when it comes to missing the ileocecal valve (unfortunately), but I've been working with a GI dietitian for about a year and she has been really helpful regarding diet. Even though she doesn't know the perfect diet for people like me, she does attend lots and lots of GI conferences where they go over the latest research on SIBO and other tricky gut issues. Because of that, she's super well informed so I usually trust her to at least tell me what is and isn't backed well by current scientific research. She said that right now the best evidence-based approach for treating SIBO is still the low FODMAP diet, plus antibiotics and meal spacing. That's what I've been doing lately, and it actually seems to be working pretty well so far (thanks to @tiss for the info about going back on Rifaxamin indefinitely, which I think is a big part of why it's working).
At one point, I asked her about the Specific Carbohydrate Diet since I read a lot about it and it sounded really promising to me, but she said it wasn't based on good evidence. I tried it anyways and it didn't work, so I'm guessing she was probably right. I also asked her about the medicine Atrantil since it sounded really promising too, but she said the research wasn't good on that either so I didn't get it. It can be really hard to figure out what's a fraud or not sometimes...I've definitely spent money on some things out of desperation that ended up being totally bogus.
I also asked her who is the best, most trusted person in the field right now in terms of research on all this stuff, and she said it's Dr. Mark Pimentel, out in California. It looks like his lab has been doing a lot of groundbreaking research in these areas: https://www.cedars-sinai.edu/Research/Research-Labs/Pimentel-Lab/ He also has a Twitter page, where I saw some pretty interesting success stories of people with weird/unique gut issues that he was able to help. If the Rifaxamin and low FODMAP diet stop working for me, I may try to see if I can find a way to go see him someday, though I'm not sure how seeing a doctor out of state would work. Unfortunately there don't seem to be many doctors in general who are well-versed in SIBO or missing ileocecal valves at all. I asked my GI doc here if there were any local SIBO specialists or anything he said no 🙁
Anyways, sorry, long post, but just thought I would shared what I've learned so far 🙂 !
@tiss thanks!! It definitely seems to keep things more in control than before 🙂 I was going to ask though -- do you ever still have flare ups, even while on it? Because sometimes even when I'm on it, and haven't tried anything new or weird with my diet, I still get flare ups. It's frustrating, but at least they seem to be less often than before 🙂
@tiss thanks!! It definitely seems to keep things more in control than before 🙂 I was going to ask though -- do you ever still have flare ups, even while on it? Because sometimes even when I'm on it, and haven't tried anything new or weird with my diet, I still get flare ups. It's frustrating, but at least they seem to be less often than before 🙂
@rachel_b , Oh yes. Still get flare ups but I've found that over time, I've learned that I will feel better soon and it won't last forever. It was so demoralizing the first 1 1/2 after surgery until I got a better handle on my diet, Xifaxan schedule, etc. I think I really developed an eating disorder after my surgery, I was scared to death to eat anything at all. I still pretty much stick to the same things all the time which is fine by me. Maybe keep a journal on how you feel each day. I was finally able to see that my good days started outweighing the bad. Huge break through for my mental state. So, so happy to hear you have a good dr willing to take a chance on prescribing Xifaxan in this way-- many wouldn't-- and that you have good support. It has been essential to my taking control of my health again when everything felt so out of control for so long.
@rachel_b , Oh yes. Still get flare ups but I've found that over time, I've learned that I will feel better soon and it won't last forever. It was so demoralizing the first 1 1/2 after surgery until I got a better handle on my diet, Xifaxan schedule, etc. I think I really developed an eating disorder after my surgery, I was scared to death to eat anything at all. I still pretty much stick to the same things all the time which is fine by me. Maybe keep a journal on how you feel each day. I was finally able to see that my good days started outweighing the bad. Huge break through for my mental state. So, so happy to hear you have a good dr willing to take a chance on prescribing Xifaxan in this way-- many wouldn't-- and that you have good support. It has been essential to my taking control of my health again when everything felt so out of control for so long.
Oh my gosh, I can relate so much about being scared to eat anything. I've lost a lot of weight unintentionally because not eating is just so much easier than eating a lot of the time. Funny you mention the journal because I was actually keeping one recently, where I recorded everything I ate and how I felt after (and even included bloat pictures). It definitely helped identify some of the foods that are more troublesome for me, but it also showed me that sometimes there's really no rhyme or reason to it and my gut just decides to flare up regardless of what I eat (which I'm guessing is just the result of somewhat random and uncontrollable bacterial overgrowth because of the missing valve). I tend to stick to the same foods every day too. Once in a blue moon I'll get adventurous...but hardly ever since it's scary and usually not worth it! Anyways, thankfully the Xifaxan at least keeps it manageable. Thanks for sharing and for the support 🙂 !
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I don't think many drs have any idea what diet those of us missing an IV should be on. We are on our own.
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3 Reactionsnot surprised. Thanks
Have you checked out the FODMAPS diet? Also, you might ask your dr for a trial of Xifaxan,
What are the symptoms of sibo
I agree with tiss that the doctors don't seem to really know the best diet when it comes to missing the ileocecal valve (unfortunately), but I've been working with a GI dietitian for about a year and she has been really helpful regarding diet. Even though she doesn't know the perfect diet for people like me, she does attend lots and lots of GI conferences where they go over the latest research on SIBO and other tricky gut issues. Because of that, she's super well informed so I usually trust her to at least tell me what is and isn't backed well by current scientific research. She said that right now the best evidence-based approach for treating SIBO is still the low FODMAP diet, plus antibiotics and meal spacing. That's what I've been doing lately, and it actually seems to be working pretty well so far (thanks to @tiss for the info about going back on Rifaxamin indefinitely, which I think is a big part of why it's working).
At one point, I asked her about the Specific Carbohydrate Diet since I read a lot about it and it sounded really promising to me, but she said it wasn't based on good evidence. I tried it anyways and it didn't work, so I'm guessing she was probably right. I also asked her about the medicine Atrantil since it sounded really promising too, but she said the research wasn't good on that either so I didn't get it. It can be really hard to figure out what's a fraud or not sometimes...I've definitely spent money on some things out of desperation that ended up being totally bogus.
I also asked her who is the best, most trusted person in the field right now in terms of research on all this stuff, and she said it's Dr. Mark Pimentel, out in California. It looks like his lab has been doing a lot of groundbreaking research in these areas: https://www.cedars-sinai.edu/Research/Research-Labs/Pimentel-Lab/ He also has a Twitter page, where I saw some pretty interesting success stories of people with weird/unique gut issues that he was able to help. If the Rifaxamin and low FODMAP diet stop working for me, I may try to see if I can find a way to go see him someday, though I'm not sure how seeing a doctor out of state would work. Unfortunately there don't seem to be many doctors in general who are well-versed in SIBO or missing ileocecal valves at all. I asked my GI doc here if there were any local SIBO specialists or anything he said no 🙁
Anyways, sorry, long post, but just thought I would shared what I've learned so far 🙂 !
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6 ReactionsHas anyone tried these supplements: from Biotics Research: Dysbiocide & FC-Cidal and/or CandiBactin-BR from Metagenics?
@rachel_b , so glad your doctor agreed to indefinite use of Xifaxan and that you are better!
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1 Reaction@tiss thanks!! It definitely seems to keep things more in control than before 🙂 I was going to ask though -- do you ever still have flare ups, even while on it? Because sometimes even when I'm on it, and haven't tried anything new or weird with my diet, I still get flare ups. It's frustrating, but at least they seem to be less often than before 🙂
@rachel_b , Oh yes. Still get flare ups but I've found that over time, I've learned that I will feel better soon and it won't last forever. It was so demoralizing the first 1 1/2 after surgery until I got a better handle on my diet, Xifaxan schedule, etc. I think I really developed an eating disorder after my surgery, I was scared to death to eat anything at all. I still pretty much stick to the same things all the time which is fine by me. Maybe keep a journal on how you feel each day. I was finally able to see that my good days started outweighing the bad. Huge break through for my mental state. So, so happy to hear you have a good dr willing to take a chance on prescribing Xifaxan in this way-- many wouldn't-- and that you have good support. It has been essential to my taking control of my health again when everything felt so out of control for so long.
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Helpful -
Hug
3 ReactionsOh my gosh, I can relate so much about being scared to eat anything. I've lost a lot of weight unintentionally because not eating is just so much easier than eating a lot of the time. Funny you mention the journal because I was actually keeping one recently, where I recorded everything I ate and how I felt after (and even included bloat pictures). It definitely helped identify some of the foods that are more troublesome for me, but it also showed me that sometimes there's really no rhyme or reason to it and my gut just decides to flare up regardless of what I eat (which I'm guessing is just the result of somewhat random and uncontrollable bacterial overgrowth because of the missing valve). I tend to stick to the same foods every day too. Once in a blue moon I'll get adventurous...but hardly ever since it's scary and usually not worth it! Anyways, thankfully the Xifaxan at least keeps it manageable. Thanks for sharing and for the support 🙂 !
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2 Reactions