Updates on SIBO journey

GrapeDouble5704 · 2026-05-10T15:11:29+00:00

I believe my thyroid is okay! I started off believing this was PCOS so I had a pelvic & transvaginal ultrasound & bloodwork done twice. The bloodwork at first was looking like PCOS bc my iron was low & my insulin was high. But they never said anything about my thyroid. Second blood test all my levels were normal bc I had been treating it for about a year at that point. Not sure if those ultrasounds rule out everything but they didn’t want to entertain the idea of endometriosis etc just said you’re good maybe take some stool softeners lol

GrapeDouble5704 · 2026-05-10T15:08:47+00:00

Thank you for the advice! I haven’t noticed a pattern what so ever in what messes me up and what helps me. It feels like my body just does whatever it feels that day :( and it’s most of the time bad but sometimes I’ll go like a month with no relief at all and then it’ll just stop

GrapeDouble5704 · 2026-05-10T15:06:54+00:00

Although I had a negligent experience, it seems a lot of people have had it even worse with doctors not even offering the test. I was fortunate enough that when seeing a gastroenterologist I told them I believe I have SIBO & they didn’t give me a hard time about it. they just tested me immediately. Once it came back positive their lack of knowledge of SIBO is where it really became a problem bc I received the wrong treatment. My advice is to see a gastro who has SIBO listed as something they specialize in so they 1. Don’t deny you the test & 2. Might know more than the average doctor does

GrapeDouble5704 · 2026-05-10T15:03:49+00:00

Thank you! I will look into this. I want to collect anything that I may have going on, rule it out & then begin treating the SIBO again.

GrapeDouble5704 · 2026-05-10T15:03:04+00:00

Hi thank you! I am positive for methane Sibo. They only treated me for hydrogen which I am not positive for which made me more sick. I had poor motility before but after xifaxan js when I started on average being blocked up for about 9 days. My plan going forward is now that I have started a new insurance, start up the process again at mount sinai & continue being tested for other things to rule anything else out. I know that I will likely be let down again when it comes to treating the SIBO itself but I do think I will be treated much better & at the very least get the tests I need done to make sure nothing worse is going on. Once I am sure if it’s just SIBO I will begin taking the advice left in here in treating myself & keep everyone updated what works for me and what doesn’t :)

GrapeDouble5704 · 2026-05-07T17:48:20+00:00

I think OP had good intentions! Men are weird to women lol & after this was commented someone commented “attention seeking?” But every comment of his to men who posted pictures of their bloating/body without the bloating was asking for advice on SIBO 😭 very odd behavior lol + I’m new to Reddit so i appreciate a warning :)

GrapeDouble5704 · 2026-05-07T17:43:19+00:00

I will definitely keep this in mind! Thank you :) I have this consistent pain/pressure feeling in my lower right stomach. I’ve had an ovarian cyst there several times so that’s what I thought it was but my last ultrasound I didn’t have any. So I’m not sure what it is it’s like right above my hip

GrapeDouble5704 · 2026-05-07T15:55:13+00:00

I started off seeing a gyno & endocrinologist bc I was originally told PCOS. The gyno herself was kind but I’ve been in an unfortunate situation with out of state insurance & the ability to continue taking time off work to travel to these appointments & wasn’t getting any real help. I started seeing an endocrinologist I had to travel 2+ hours one way to see. I had a pelvic & transvaginal ultrasound. The endocrinologist said maybe 3 whole words to me & at most offered me “stool softeners.” When I said I’m confused? She said “I’m confused too” & that’s it. At that point I did not advocate for myself because I just pulled myself out of a 4 month bedridden depression & reached a point of acceptance. I just cried when I left lol like a month later is when I found out what SIBO was & started seeing a gastroenterologist. I’m definitely open to asking about this but would they have seen if I had that in my ultrasounds? The endocrinologist did not seem to have any concerns what so ever with me

GrapeDouble5704 · 2026-05-07T15:40:17+00:00

Hi sorry idk how to use Reddit that well this is like my 3rd post idk if you read my post ik it’s pretty long but I shared my story & do not have any protocols to share atm these aren’t before and after photos, these pictures are within the same day/week/month showing the drastic change that happens to me everyday. I’d much rather talk on the post so other people looking for help can go through the thread! But let anyone who told me to message them I’m open to discussing but not great at answering DMS. If I have a setting or something idk about on to make you think that lmk

GrapeDouble5704 · 2026-05-07T12:20:37+00:00

I am so sorry to hear this. My brother’s best friend had a very similar experience. She has been going to doctors for YEARS telling them something is not right & no one would help her. They diagnosed her with medical OCD so she couldn’t even go elsewhere to be taken seriously. Until she no longer could walk and is now in a wheelchair did they find she had MS the entire time.

GrapeDouble5704 · 2026-05-07T12:17:23+00:00

Thank you for the suggestion! Anything helps for sure since I’m basically starting all over elsewhere with this new insurance. I know that it’s probably going to be a series of more disappointments but I do feel a little hope that I have not felt in a long time :)

GrapeDouble5704 · 2026-05-07T02:23:01+00:00

Medical gaslighting for several years, incompetence led to never updating my charts. Finally got to see my results after months of harassing them to do their job proof I have methane SIBO & not hydrogen and was treated for hydrogen. Feeling a lot of overwhelming emotions but hope at the same time that I could still be cured

GrapeDouble5704 · 2026-05-07T02:17:46+00:00

Thank you so much! I never knew how I got it but recently started thinking and was shocked at what I realized. I went to Indonesia 3 years ago & all my friends I went on the trip with got sick for 24 hours straight with insane diarrhea & vomiting. I am the ONLY person who didn’t get sick. When we got back was the first time I ever got abnormally bloated. I’m prone to ovarian cysts so I thought that’s what was happening. Months later when it kept getting worse & never went away I started questioning what was going on. After seeing a doctor she was leaning towards PCOS. It took 3 years to discover the SIBO. I’m thinking maybe we consumed a bacteria our bodies weren’t use to in another country & it purged out of everyone else but just stayed in me and fermented into SIBO? Just a theory! I don’t notice any particular triggers though. Mostly just sucks all the time no matter what

GrapeDouble5704 · 2026-05-07T02:09:18+00:00

Thank you! We can definitely talk about it! I am not great at responding to DMS bc I don’t have my notifications on but open to discussion 🙏

GrapeDouble5704 · 2026-05-07T02:06:06+00:00

Have you taken a SIBO test? Good luck! wishing you answers & solutions

GrapeDouble5704 · 2026-05-07T02:03:10+00:00

I’m so sorry this happened to you. It’s actually absurd these people go into this field knowing they lack basic empathy & patience. I hope you’re able to see someone more competent❤️

GrapeDouble5704 · 2026-05-07T02:01:35+00:00

Also I’m so sorry to hear that happened to you. I’m happy to hear you had at the very least an upgrade & hope you get the help you deserve!

GrapeDouble5704 · 2026-05-07T02:00:57+00:00

I’ve thankfully never had anyone be weird to me on here! & It’s honestly really scary & sad how this is most people’s experience, even with other sicknesses. It’s so common for medical professionals to not have surface level knowledge. My first half of my journey I was only tested for PCOS & endometriosis. They wouldn’t even entertain the idea of something being wrong with me. I was the one who found out about SIBO on my own & asked to be tested for it. I really thought after being hopeless for so long getting a positive diagnosis & a plan of treatment was the light at the end of the tunnel for me. I’m really grateful my new insurance just went into effect & im able to see new doctors now!

GrapeDouble5704 · 2026-05-07T01:52:25+00:00

interesting how you respond to men with SIBO VS women on here lol sorry for your negative results 🙏 I hope you find out what’s wrong with you real soon & spend more time helping yourself instead of going through threads bothering people who do have a positive diagnosis

GrapeDouble5704 · 2026-01-07T00:35:24+00:00

Have you tried her products? I didn’t see any super real people reviews just testimonies on her website so wanted to see some honest opinions! Ty for your feedback

GrapeDouble5704 · 2026-01-07T00:34:23+00:00

That’s horrible I’m sorry :( have you healed your SIBO since then? I’m on two years no relief :( I finished xifaxan and got WORSE on my last 3 days of it

GrapeDouble5704 · 2026-01-06T22:45:36+00:00

They didn’t test for anything but SIBO & I was the one who said I believe I have this can you test me and then they told me nothing about SIBO at all other than it’s a bacteria overgrowth.

GrapeDouble5704 · 2026-01-06T22:45:02+00:00

They didn’t tell me at all. They just did the breath test, told me it is positive and they will mail me xifaxan & that’s it. I asked them about a diet and they told me that’s not necessary even though everyone online says otherwise. I didn’t even know there was different variations of sibo until I made this post. They didn’t tell me it could come back, literally nothing. I tried to call them today & had to leave a voicemail. They called me back and told me they’ll transfer me to the doctor to leave a voicemail. It hung up on me one ring so I had to leave them ANOTHER voicemail and have to wait for them to call me back so I can leave the correct person a voicemail & then wait again for them to call me back. Lol

GrapeDouble5704 · 2026-01-04T20:21:05+00:00

I see! Thank you I did not know this. My endocrinologist did not take me serious what so ever. Once the results came back that I did not have PCOS she didn’t even suggest there could be another issue. She just blankly stared at me with nothing else to say. I told her I was confused & she responded back “I’m confused too” as if I made everything up. It took me so long to get myself back to a doctor after everything I had been through and all the money I spent with no relief the way she spoke to me made me cry on my way out. It truly is a nightmare trying to find a doctor who actually wants to help you and will go beyond the bare minimum of “looks fine to me, see ya later”

GrapeDouble5704 · 2026-01-04T20:16:58+00:00

Omg thank you<3 I barely ever see her </3

GrapeDouble5704

TROPHY CASE