Intermittent fecal/sulfur breath odor

Posted by pbleonar @pbleonar, Jun 8, 2017

After scouring the web, I'm certain I'm not the only person with this problem, and not the only person who's been told they were imagining it. Anyway, the issue is I have intermittent odors when I talk (yes, I've been to the dentist 10+ times-- all say my oral hygiene is on point and xrays and inspections showed nothing). The only time it's practically non-existent is when I eat an unhealthily low-carb diet. Like others online, I've had CT scans, Barium swallows, endosocopy/colonoscopy, screening for parasites (getting one more from an IDS before crossing that off my list). All showed up negative. I tested positive for SIBO, but after researching that for the past 3 years, I'm certain SIBO is more of a symptom than a primary causal problem. Furthermore, even when I treated SIBO with heavy antibiotics, it did absolutely nothing for my breath-- and yes I was cleared of SIBO after a couple rounds of work. yet, the moment I eat carbs, I still get a "did someone just s*it themselves?" comment.

I guess what I'm getting at is I'm tired of doctors just saying it's IBS and SIBO and then proceeding to do zero investigating afterwards. I want to get down to the root cause of this, but most doctors are either too apathetic or too incompetent to do anything. Are there any researchers who specialize in studying and diagnosing hard to find problems in the GI tract? Between the 3 GI docs, 2 ENTs, 2 NDs and 1 IDS, I just can't take normal doctors anymore. I want my life back and I want a specific root cause so I can work on progressing from there.

Further notes: Diarrhea actually cleared up when I ate junk food and I had zero bloating, albeit the odor remained.

Xifaxan and neomycin did nothing for the odor, nor did the elemental diet. I actually think the elemental diet made the smell as bad or
worse than before.

*******Nitazoxanide********** worked wonders for the month I was on it. Solid stools even with foods that normally cause my ibs to flare up.
It's exactly the reason I felt there was more going on to everything than just SIBO and IBS.

Interested in more discussions like this? Go to the Digestive Health Support Group.

@jojododo

I double/triple-checked OP's post to make sure I hadn't posted it myself and forgotten about it. The OP's post describes my symptoms and frustration with this problem to a T. I've been dealing with this mystery condition for 14 years. I have been to ENTs, dentists, and GI doctors and nothing has ever come close to a diagnosis, much less a cure. When I told a GI doctor, with much humiliation, about this problem, she dismissed me with, "that's not important to me." Fine, but it's sure as hell important to me!

With respect to the replies here, one of the most frustrating part is the most common responses revolving around halitosis. But it's not halitosis as we know it. It's not eating a garlic burger or neglecting dental hygiene. Of course, I have halitosis when I don't brush my teeth or eating 10 garlic pieces. No, what is perplexing is that I will be talking to someone normally and for long periods, everything is fine and then all of the sudden, the person will jerk back. And I know it's a fart breath has wafted out. That's as plainly as I can describe it. Sometimes I can smell it and sometimes I can't. When I do, I can't believe how foul it is. And it happens when I'm not talking or doing anything so that's why I don't think it's oral and that it is further down. As the OP posted, it is intermittent fecal/sulfur breath and it pops up randomly. It has destroyed my self esteem and greatly affected my social life and career. It's horrible to hear people ask if someone shat. The most recent example was a guy saying, "it smells like gas here, I'm moving away" while I was in a group conversation.

Done all the GI tests, taken all the acid reflux meds, done all the ENT sprays, tried every mineral and supplement, acupuncture, chinese medicine, etc. Everything under the sun. Everything that has listed here in the replies and yet, this problem persists. It's been 14 years and I miss that outgoing, intrepid person I used to be. Now I stay at a job I hate mainly because I can work from home. I want to look for a new job but dread going out there for interviews and having this issue pop up. It's intermittent and it happens throughout everyday.

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Hi, I know it’s been a while since your first comment. I’m curious if you’ve found anything that helps. I’m going through the same thing. It seems to also come out through my sweat. My job requires a lot of physical activity so this is a recipe for disaster. I desperately need answers because my doctor is prescribing anxiety medicine because she thinks it’s all in my head.

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@elle1233

Hi @pbleonar2 I haven't had time to read what your problem is - but I just finished 2 (separate weeks of evaluation/consults at Mayo - and am VERY disappointed, rather disgusted; in fact. They actually did diagnose my problem - or what seems to be a big part of it, and while I know from my own research and info that other centers make available to the public - that my problem is quite treatable.. and in many people, good resolution of symptoms can happen.... in fact. I've had a positive response to the first round of antibiotics I was put on. however, from what experts in this area do, I should have a little longer course, and possible another AB, based on the type of bacteria I have. However my GI doc, who is a Fellow, appears to have no interest in "fixing me", nor looking at any of the research or information from a major center that Specializes in SIBO., nope, he wants me to go to a "chronic pain program"... and as you say, "learn to live with it'! I'm thinking ,, WHAT? You're giving up already? I haven't even had a chance to go through a decent treatment protocol, and i wrote these concerns to him along with the fact that I am getting sick from the Miralax he wants me to take (BAD for SIBO), which I told him before... he thinks constipation is causing my pain.. I KNOW it isn't.. I now know the SIBO is likely making me constipated at times.. but now I have diarrhea thanks to his "treatment". The he got mad because I was asking him to many questions on the portal (I thought he might want feedback on how I was responding.. I asked for a prescription for something for my SIBO protocol that he actually suggested, and 2 weeks, I can't get him to answer.

I told the urgent care Doc (I had so much diarrhea I was really dehydrated).. she said, get a different doctor, and go to Cleveland Clinic.. She said that's what Mayo does.. you see the people in training.. that's why you don't see anyone who "specializes" you your problem (I don't know the initials.. it would help if people write things out maybe. if you don't know SIBO, I will). I've heard Cleveland Clinic is really good for GI problems from several other people, so I'm thinking of going there next.

It's probably not popular b/c this is Mayo's site, but maybe the feedback is something they need, and if they want to improve their GI care, they'll listen. It's terrible I (and my insurance company) have paid them over 20K , and I'm on the internet coming up with my own treatment protocol, found a SIBO diet from Cedars-Sinai in LA (they sent me to a dietician who knew NOTHING, told me to eat three times a day and eat a lot of Fiber (EXACTLY the opposite of what us SIBO people should do... LOW fiber for us), so she gave me BAD advice.

I hate to say it, but after 3 bad experiences, I'd move on. Don't know where you live, but Cleveland Clinic is in midwest, so maybe close. The SIBO centers are on east and west coasts, I'm trying to see if I can get someone local to write scripts for me. But it's really sad.. that there is treatment for me.. and the doctor won't write the scripts.. and I told him I was miserable... on Aug 21. This is substandard care, IMO.

And no, I don't want to "live with it", that was why I came there.. I have a treatable problem, and I think there are other things that could be ruled out. The GI Fellow also didn't have correct information about some other things.

Other places, you make an appointment with a specialist, and see them. I wouldn't mind seeing a Fellow (someone still training) if they were open minding and wanted to learn and were open the idea that there is so much to know nowadays one doctor can't even know it all, and work with me... HE could actually learn a lot too, which is what he is supposed to be doing. But he doesn' t give a damn (sorry can I say that), it seemed to fit. After all, he doesn't get paid for answering questions on the portal. I should drive 4 hours and make an appointment, so he can charge me $400 to write a prescription. That is crazy.

You can't change people, if the docs aren't taking you seriously they aren't going to change. Like the one I saw. I don't bother to waste my time. Cut your losses. I learned the hard way, spend too many years with docs like that, and all I did was lose years of my life. Check into the Cleveland Clinic... you shouldn't have to beg for decent care.

Good luck and I'm with you..
Oh.. FYI.. I just met a retired Family Practice doc who has SIBO (my problem) and was looking for info.. I sent him my collection (I've done a LOT of research).. he's actually written a book and has a website calling "managing your doctor".. it's all about what i've been kvetching about .. and he agrees is a huge problem with the medical system.. he wants to help people learn how to be their own advocates , how to be assertive about getting care... ...I just ordered it, looks fabulous! You can also write him on website.. doesn't look like many people do, but he's interesting in hearing stories from people who have had to basically help themselves b/c the system didn't....
https://managingyourdoctor.com/

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Hello , I've read your post for 2019 , have you found a doctor or solution that has helped solve you problems ?

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Hello - have you since found anything to help with the odor issue ??

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@lovelybones

I believe the smell is coming from the mouth and nose and not body. It is crazy to think something so bad can come from the mouth and fill up a room.

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Were you cured buddy?

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@lovelybones

Hi @glam55 do you also smell the odor in your nose ? I have this problem and a doctor at an urgent care said if the smell is coming from mouth and nose then it is coming from somewhere in the body

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Were you cured of this?

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@pinkbird

I have this same exact problem. I've been told I smell like rotten eggs, sewage and poop. It is socially crippling. There are certain things that make it worse, for example, if I have an alcoholic drink, eat beans/hummus, bananas, chocolate, fried foods or drink lemon water and certain teas. I would say the alcoholic drinks are the worst for me - after 2 minutes of consuming a drink I emit the odor and it's just continuous from there (with several comments of "who farted").

Another odd thing is when I have a cold or sinus infection, the smell is absolutely horrendous....it fills a room and people can smell me from many feet away.

The crazy thing about all of this is that I can rarely smell it. There was a time when I went back in my car after being out of it for a couple of minutes and I smelled it then.

Some other info - my tongue is always a light white color with white chunks in the back. I've had a two candida tests (a swab from my tongue and one from a stool analysis), but they were negative.

I'm pretty sure this is related also - my thumbs and pointer nails have beaus lines (horizontal grooves). Recently had blood work done and I'm not deficient in anything. My doctors do not know what they are from (asked my regular doctor and dermatologist about them). Also, my hair became very thin and is always shedding.

Digestion related issues: I sometimes have heartburn and am constipated occasionally.

Some other background info - a year ago I was tested positive for SIBO and I was treated with Xifaxin for two weeks. The smell never went away. I believe I do have some sort of dysbiosis (maybe hydrogen sulfide dysbiosis), but I think it's a different bacteria than what was tested when I was tested for SIBO. The test results showed an increase towards the end of the test (which I have read can be a false positive).

My life is a nightmare because of this. It makes me depressed and literally not want to do anything. Going to work everyday or doing anything socially is a struggle. I'm on a mission to solve this. I'm going to order a stool analysis test and will hopefully gain some insight into what's going on. If I come across any answers or anything that helps, I promise I will post it here.

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Friend can you give us an update?

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@chrioli

Hmmm, my son was plagued with this problem. They discover he has stage 2 fatty liver disease though he is young and an average weight. He has stopped all PPI and upped his exercise regime and is eating a plant based diet. All foul smelling breathe has resolved!! Best wishes! Hope you get to the root of what is causing yours. I understand that it must be most distressing. Keep searching my impression is that many things can cause it.

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¿En qué consiste esta dieta?

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I haven’t read this entire thread, but have you been tested for h pylori? Mine was discovered during endoscopy and was eradicated (I hope) with antibiotics. Apparently many people have it and don’t know it, but it can cause breath issues as well as possibly lead to GI ulcers.

Best wishes, Cindy

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After my diagnosis of Gastro Perseus. Sorry spelling errors. It’s also known as a paralyzed stomach. It won’t empty as it should. So food sits in the stomach acids and since I have food sometimes 2days to digest food. But while this is happening if I belch it smells AND taste like 💩. It’s highly embarrassing. Mine last for about 2 days sometimes a little longer. Has anyone else experienced this?

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@tiabrooks

After my diagnosis of Gastro Perseus. Sorry spelling errors. It’s also known as a paralyzed stomach. It won’t empty as it should. So food sits in the stomach acids and since I have food sometimes 2days to digest food. But while this is happening if I belch it smells AND taste like 💩. It’s highly embarrassing. Mine last for about 2 days sometimes a little longer. Has anyone else experienced this?

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Does the smell come out of your nose? What sirnomas generates gastroparesis? Thank you

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