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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info: https://youtu.be/811v7RLXP9M
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MEBO TMAU TESTING DISCONTINUED
(2012-2017)

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MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
Funded by uBiome Research Grant

"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

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BO Sufferers Podcasts

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TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
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USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study
NCT02683876

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned


Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
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Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Friday, March 20, 2009

'Over the counter' celiac home test in the UK and NZ

The freedom to test is something very helpful to conditions such as metabolic body odor and halitosis, where sufferers are likely dismissed by doctors as wasting time, and so don't manage to get tested at all. Someday anyone will be able to pay for any test, and then you can say peoples own health is in their own hands. At the moment the government bodies are in charge of our health ultimately.

In the UK (and New Zealand, as far as we know), one helpful test that is now available over the counter (or on the internet) for a fee is a reliable(?) home test for celiac. While celiac does not cause metabolic body odor (e.g. fecal body odor), it probably makes sense for someone with fecal body door to look for anything that may contribute to a dysbiotic condition of the gut (until the day the government says : the body odor and halitosis clinic we ordered to be set up has now shown what causes fecal body odor and these are the factors of the syndrome).

The gold standard test for celiac is a biopsy, but there are a collective group of blood tests that are normally used since they are easier and also collectively are almost certain to be specific and sensitive for almost every case.

The group of tests are :

  • Serologic Tests
  1. EMA (Immunoglobulin A anti-endomysium antibodies)
  2. AGA (IgA anti-gliadin antibodies)
  3. DGP (Deamidated gliadin peptide antibody)
  4. tTGA (IgA anti-tissue transglutaminase

the AGA and EMA tests are now probably considered outdated and unreliable outdated. The 'vital' new test nowadays seems to be the transglutaminase test.

The celiac sprue association website says :
Deamidated gliadin peptide (DGP) antibodies tests developed in 2007 in combination with Tissue transglutaminase (TTG) antibodies and have better accuracy than native gliadin antibodies. Multiplex immunoassay (MIA) measures multiple antibodies simultaneously providing with reduced turnaround time and cost. This test for antibodies is as accurate as ELISA for the presence of celiac disease. Rational combination testing can help identify patients who need intestinal biopsy.
Anibiotech of Finland have developed a home test that detects transglutaminase reaction. The test can be done in the form of a finger-prick test at home. If it is negative you cannot be totally sure you don't have celiac (false negative), but if you are positive it's very likely you have celiac. The person could then go on to test through their Dr.

If nothing else, it's a cheap way of at least ruling out something that is likely to be detrimental to your health, if not the reason for smelling.

Update: The Biocard celiac home test seems to be now available in the USA and other countries:
Example seller of Biocard Celiac test in USA

Manufacturers of Biocard
example of an online seller in the UK

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