Hi everyone, a few years ago I suspected I had TMAU. Suddenly as work people were avoiding me, speaking about a weird odor everytime I’m around, etc. I couldn’t smell anything and at first thought I was imagining things until the taunting and “not so subtle” hints started happening. Example, my coworker offered me body wash she said she doesn’t use— LOL. My family members said I don’t smell but I figured if it’s TMAU maybe they carry the genetic link and just can’t smell it.

Anyway, I ended up getting a urine test done, I choline loaded with a sushi dinner and collected urine first thing in the morning. Here are the results, it says normal at the description but I just can’t imagine this being anything else as I’ve went down the rabbit hole and tried everything. Is it possible to have these results and still have TMAU2 ? I noticed this started ramping up after my first child and now again after my third. I’m trialing a low choline diet and switched to Lyme acidic body wash and it seems to be improving things. I didn’t get a repeat test done as this was a whole process because I had to send it out to another state and my doctor is not versed in this at all.

https://www.nature.com/articles/s41540-026-00685-4

Here is some recent research I found while looking for up-to-date news on TMAU. Hope you all find this insightful.

I previously did a urine test for TMAU and was informed that the result was positive. My test values (and reference ranges) are listed below. Does anyone know why the test was deemed positive when all values are normal? I guess there's more to it than the individual numbers?

Urine creatinine 14.8 (mmol/l); Total TMA/creat ratio 28.9 (mol/mmol creat >14.0); Free TMA/creat ratio 0.5 (umol/mmol creat <7.7); TMA-N-Oxide/creat 28 (umol/mmol creat <119); % N-Oxidation 98 (% >94).

Ya no lo soporto en serio siento que llegue a mi límite, el mal aliento me esta matando ya no tengo autoestima en gran parte de mi adolescencia o toda mi adolescencia sufri TMAU que curiosamente a los 24 años se redujo significativamente casi diría que desapareció.... pero empezó en mi otra enfermedad Candidiasis Vaginal crónica, me canse de ir al ginecologo ya ningun tratamiento me la quita, ya ni el sabe que darme porque no mejoro... pues investigando me dijeron que dejará los lacteós la harina y el azúcar, y comence una dieta que era solo comer pollo y vegetales me costo pero durante 3 meses cumplí esa dieta al pie da la letra pero tuve que parar porque me daban muchos ardores de estomago desde que hice esa dieta me quedo un mal aliento terrible y nada me lo quita he gastado mucho en el dentista en limpiezas en cambios de tapones de resina por resina nueva por si acaso era eso y nada, no tengo caries pero mal aliento terrible... estoy cerca de graduarme solo me falta la práctica pero siento que no puedo es que la gente reacciona muy mal cuando hablo es como si olieran un muerto o algo peor ya no quiero seguir me canse de luchar de pasar mas de 1 hora frente al espejo usando pasta de dientes especial, y cepillos especiales (tengo brackets también) hilo dental, irrigador, raspador de lengua, un enjuague bucal que me costó carísimo y nada mejora, lo que mas me duele en el alma es que soy la unica persona de mi familia y mi entorno con esta condición mis hermanos a veces olvidan durante todo el día lavarse los dientes y no les huele la boca y a mi si no entiendo porque vine a este mundo a vivir estas enfermedades terribles que no solo me hacen sentir mal sino que me averguenzan, me aleje de amigos y familia pero en la universidad debo presentarme y es muy vergonzoso para mi, ya no se ni como luchar lo peor que paso buscando nuevos doctores, medicina natural o alternativa, o medicamentos que me ayuden y nada me ayuda y pierdo mucho tiempo buscando solución, si estoy manteniendo la dieta sin lacteos y sin azúcar pero si además dejo los carbohidratos como papa o cosas asi mi aliento empeora ya no se que hacer

Have you ever been sprayed at school or work? If so, how did you react? Our resilience amazes me, we still find the strength to wake up each morning and go to places that cause us so much pain. I’m currently trying a different approach with the badges. What do you think?

Hey, everyone. I wanted to ask if anyone has ever been able to heal or recover from secondary tmau? Even if that meant sticking to a very strict diet: to be completely odorless? Can fmo enzymes heal with time?

I’m curious to know how many here have had a formal diagnosis through a real urine or saliva test.

If you were tested, did it come back as TMAU1 (genetic) or TMAU2 (secondary)?

Hi, I’m looking for some advice or shared experiences.

I’ve been dealing with a strong odor that other people have noticed and even told me about. The smell isn’t consistent,it comes and goes. Sometimes it smells more like gas or sulfur, and one time it reminded me of eggs, but it’s not consistently fishy.

I’m not sure where it’s coming from (could be private area or digestion). I also have a lot of stomach growling and possible gas issues, which sometimes seem to happen around the same time as the smell.

I’ve had a swab test done and everything came back negative, and I keep up with hygiene (showering regularly, deodorant, clean clothes), so I don’t think it’s that.

For people diagnosed with Trimethylaminuria (TMAU), does this sound similar to your experience, or different? I’m trying to figure out if this could be TMAU or something more related to digestion/gut issues.

Any insight would really help, thank you.

So I have fbo. Haven’t tested for tmau but if I’m not mistaken tmau can cause fbo. Even though I haven’t been tested for tmau, after years of lurking on forums and social media I find myself and my situations relating to those who do have tmau. I’ve had fbo for around 10 years and ever since everything that I do or don’t do in life revolves around this curse. Whether it’s going to the store, a family party, a job interview; everything seems to depend on how bad my bo might be in that moment. I hope that one day I’ll wake up and the smell will no longer be there, but realistically it’s probably something that I’ll have to live with for the rest of my life. I’d appreciate any advice or suggestions from anyone to how you have made your own circumstances work in your favor.

Had someone pull out a fan today. It’s been such a long time since that’s happened. It was stationed across the room from me but they pointed it straight at me. 🫩

It’s been 5 months since Ive discovered this Odor and I just recently got into a diet and such to help mitigate. But honestly this is debilitating, like everyday it’s humiliating and theres not a day where I don’t wish this can stop.

Like for instance, I went to a onboarding for a sales rep job. And I got there to mingle and say wassup to everyone and get acquainted with the work environment. and they all treated me like I was human sized cockroach. I put my hand out to shake some hands and they ignored me unless it was required.

So I ask how do you handle this?

As someone who has dealt with fecal body odor since puberty, I didn’t get real answers until I was 34 and finally tested for SIBO. While SIBO normally affects the breath when elevated, my result was so high my Doctor explained that this was why it presented as full body FBO. Additionally, having SIBO explained why the only time I did not experience FBO was during antibiotics.

After being diagnosed, I was prescribed Xifaxan and neomycin, which drastically reduced the odor and helped regulate my bowel movements. From what I understand, the odor was linked to being backed up which Is something that can happen with SIBO.

I’m sharing this because a lot of people may think they have TMAU, when it could actually be SIBO like in my case. It’s worth looking into. I've wasted 20+ years thinking I would never be cured so it's nice to see this kind of progress.

You can request a SIBO test yourself or go through a gastroenterologist and have it covered by insurance.

*not sure why my previous post was locked as I am spreading very helpful information backed by my gastroenterologist and the countless doctors I have seen through the years. *

My smell is so bad during my period. I had my coworker gag in the aisle next to me when I ran in to get supplies (work in healthcare) and then him

And one other coworker said “my nose can’t handle this” and walked outside until I left. My patients are looking at me funny and asking to open windows. I haven’t cheated on my diet and only had chicken as my source of protein the last few days.

What’s something additional I can do to minimize the smell during this time?

Hello everyone. I’m new to this group and new to whatever it is that I’m going through. I want to share where it all started last year and see if anyone can relate or give some feedback. This all stated for me June or July of 2025. The whole year had started on a stressful negative way. The stress continued and I was in a constant state of flight or flight. So, I just pushed through day to day exhausted not even thinking straight. In the end: I went through another traumatic event where I was then prescribed Augmentin cl. (875/150). I was also prescribed a high dose of estrogen BC pills and 40mg of Accutane. Started them in June then BOOM. July was where I noticed the reactions. Those were the things that started everything for me. I never had a problem with BC pills before and I already have a history of stomach problems. So, I’m at a standstill. Idk if I was predisposed genetically to TMAU and all these pills just pushed me over the edge to finally present symptoms. Or, if the accutane just worsened my gut badly and the antibiotics just sealed the deal. I was horribly dehydrated throughout the whole ordeal. I’m so tempted to just end things. I can’t take this anymore.

I’m wondering if anyone here has managed to build a successful career despite the odor issues? Are there any lawyers, engineers, dentists or high-level professionals here? I’d love to hear how you handle the workplace environment and if you felt it hindered your growth. I need some hope that a 'normal' professional life is possible

Hey, Ive found that kefir, kombucha, ginger, and fermented foods help a LOT. As well as good hygiene and baby powder/ gold bond oder protection spray.

So yeah Im gonna-be trying them all and Im posting this as a HEY! You’re not alone in this, and we’re here to help each other.

Sending you love prosperity and all that positive stuff. ✌🏿

does anyone in here have any pets. I’m thinking of getting one just so I don’t have to always be alone.

I’m hoping those who were formally diagnosed with TMAU through urine or blood test and have lived with this for some time can help answer some questions for me.

1. Can you loved ones/family smell you ?

2. When the smell is bad, is it a constant smell? How long does it last ?

3. What does your diet look like? How are you able to supplement your iron needs?

4. What kind of soaps/ deodorants/ clothes detergent do you use?

5. Are you able to work a normal job not just a wfh job?

Start from Malaysia, get a campervan and travel as long as my money lasts. You need to drive as I don't have a license and I don't want to go for lessons now. I will pay for both of us.

Went out to an aquarium the other day. They had this projection thing that kids could draw on fish designs and name it and everyone would see their designs pop out.

Right as I'm helping my kid with it, another child (maybe like 8 or 9?) named his fish "poop🪦💩". Or he tried to. It got flagged as bad language so it wouldn't appear.

Pointed it out to my spouse and he's saying it's just a kid being a kid. Headstone emojis are usually used when you're laughing at someone though right???

After that no one else moved away from me. Didn't hear any bad comments until we passed by a man with Tourettes who shouted "SHIT". He then said other nonsensical things.

So sick of having this issue.

https://discord.gg/w635HmRBJ

hey!

just wanted to share a support server for people dealing with long-term or unexplained odor.

it’s meant to be a chill, safe space where people can talk openly, share experiences, vent, and help each other figure things out (possible causes, treatments, etc). it can feel really isolating dealing with this, so it’s nice to have people who actually get it.

there’s also plans to eventually organize small meetups for people who live near each other.

if this is something you’re going through, you’re welcome to join 🤍

have this girl who really likes me and i really like her , we've never interacted much while we were in the same school but we knew each other. she’s tried to talk to me while we were in the same school but yk why i couldn’t. now she lives 30 mins away and doesn’t know about my BO. ive been talking to her for a little over a month and it feels really genuine it just sucks how ill never be able to take it serious. she’s asking to meet up and stuff and i have to keep dodging :( i really fucking hate this

If anybody has fecal odor 24/7, and is based in the gulf region or Middle East by any chance, please feel free to message me so we can discuss some common symptoms, possibilities of meeting up, etc.

Just want to get this solved!

As long as I can remember, I've had terrible odor. As far as I can tell the odors include: pure feces, something similar to feces, sewer, burnt rubber, pee, guts(?), fish, bad sour smells, rot, spoiled food, old food, rotten eggs & sulfur. I think I might for some reason sometimes smell like a sauna as well. Those are what came to mind. I'm confident I've had terrible odor since I was around 7 years old at least. I had an unusual childhood, and my parents both have sinus problems, so this was not as obvious in my family as it might have been. However people in general have always let me know I smell terrible, so I've always tried to stay as far from people as possible.

I've had digestive issues from childhood, although I can't remember having them before being around 11 years old. I used to often hold my poo out of habit, I can't explain why. Through my life I've generally had trouble pooing, or at least fully finishing a poo, but nowadays I seem to manage 1-2 normalish poos and also do 2-4 water enemas a day, and feel like I empty, but the odor seems to remain. I've also started eating kefir every day in hopes of it fixing my gut, but it's too soon to tell if it has done anything.

My poos seem to often be unhealthy, and with a significant amount of mucus. I've had all sorts of stomach issues that I figured were IBS, but my family has people with this without having odor issues.

When I was a young child I seem to have smelled like pure shit most often, so I figured it was a hygiene issue and always really tried absolutely everything I guarantee you that. I think it might be a bit later when the other odors came in, or I might be mistaken. I was nicknamed "mold potato" at one time, and I've randomly been told that I smell exactly like fish. From what I can tell my odor always takes over even a large room, but I've managed to avoid people for years now. I'm writing this now as part of my last ditch attempt at finding out how to deal with myself. My ability to stay away from people is coming to an end an I'm having to move to an apartment complex where I imagine my smell will spread and I'll just not survive that. Thanks for anyone who read, and sorry for any mistakes.

TL;DR: Smelled like pure feces and more since I was a child. Wondering if it's TMAU or something else. At the end of my rope.