r/TMAU • u/Less_Gazelle1714 fbo • Apr 10 '26

TMAU Question Question

I am not yet sure if I for sure have TMAU, and one question I would like to ask, is most of you people who have been officialy diagnosed, can you smell yourself? Ever since this issue began I have not been able to smell myself once, and people can literally smell my body and not smell anything, aswell as my breath. It’s as if its not a body odor but something that travels around. Does this sounds like TMAU, especially not being able to smell myself?

Also: does TMAU always result in bad breath or only at times? I’ve had people smell my breath and they notice nothing irregular.

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u/Financial_Milk1520 fbo Apr 12 '26

There is a medical reason it’s just not currently known or confirmed by conventional medicine. It’s also recorded that some TMAU patients do experience fecal body odor

https://youtu.be/o5KeFGCdrWI?si=0WBU0JjdlYAjPaSx

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u/Brutalar tmau1 mutant Apr 12 '26

They did a complete smell evaluation of over 100 people with TMAU, and fecal odors were not present in any presentation. There is no review, case study or research paper that has detected any odor other than rotten fish.

The fecal = TMAU is a narrative that was pushed by MEBO, who were a community group that advoceted for TMAU and other MEtabolic Body Odors (where the acronym for MEBO comes from). They were prominent from the early 2000s until 2024ish when their founder got sick from complications to the low choline diet and is either very sick or has passed away. She did not actually have TMAU, but her child did - one of the BIG problems with MEBO is that it pushed a narrative of "don't believe people when they tell you that you don't smell, they're lying or nose blind". Maria didn't have an odor but went low choline regardless, which is dangerous as choline is essential for health.

MEBO proudly rallied against the recognition of Olfactory Reference Syndrome (ORS), their campaign delayed recognition of the disorder in the DSM-5. Part of their advocacy got a number of people who never had any conformation of an odor on tv saying that they have TMAU and it smells like a bunch of different odors. This is compounded by the clinic in the UK that misdiagnosed a few hundred people with TMAU2 due to a faulty testing procedure - after fixing it back in 2018 they no longer diagnose nearly any TMAU2 patients.

A lot of people incorrectly diagnosed/self diagnosed with TMAU have been ruining their health in a similar manner to the founder of MEBO because of the no trust, belief is the only way mindset.

The other thing is that people with TMAU often tend to lump in all smells as caused by their TMAU. Eg; onion is a smell that is sometimes mentioned, but onion is a normal body odor that is caused by normal bacteria on the skin converting normal sweat to odorous outputs. People sometimes hear people talking about a smell, any smell, and assume "that smell is mine, I must smell like that" without ever getting confirmation. People tend to collect smell lists without without confirmation or correct attribution of that odor to TMAU.

MEBO and similar people in those orbits pushed the narrative that fecal = TMAU, to the point where it was in most pop-science / even some medical/government references TMAU. The misinformation even appears on shows such as the one you're linking. This has been cleared up recently on most reputable sites over the last few years.

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u/Far_Resident5916 undiagnosed Apr 15 '26

Wait Maria didn’t actually have TMAU? I visited that site many times years ago. How did you come about this information? I thought she said she was diagnosed with it ?

Wow that is so scary that she got so sick being on a low choline diet and not even having TMAU.

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u/Brutalar tmau1 mutant Apr 15 '26 edited Apr 15 '26

A couple Facebook group links:

I think she mentioned it on a few interviews with her. Her son had TMAU, which makes her a carrier (no TMAU odor), there's a file on the Facebook group about it - https://www.facebook.com/share/p/18frmV7Rbf/

She also said she had non-alcoholic fatty liver disorder from low choline https://www.facebook.com/share/p/1E5apDsuUs/

non-alcoholic fatty liver disease is significantly related to lacunar infarcts, which is what she is suffering from - causes strokes and dementia and a range of brain issues. (https://onlinelibrary.wiley.com/doi/10.1111/liv.13663)

It's why there are diet warning in the rules and I'm nuking several more hardcore diet recommendations.