Admin Control Panel

New Post | Settings | Change Layout | Edit HTML | Edit posts | Sign Out
March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info:
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country

MEBO Map Testing & Meetups

Full details :
want listed ? contact

MEBO - UBIOME study 2018



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

Started May 2018 - Ongoing

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


Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts



TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
TMAU Petition USA end total 204
USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study

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
MEBO Research is a
NORD Member Organization
See RareConnect

Popular Posts (last 30 days)

Upcoming get-togethers

Let us know if you want a meetup listed

Subscribe to Blog

Enter your email address:

Delivered by FeedBurner

You will be sent a verification email

Subscribe in a reader

Blog Archive

UK residents survey : Prof Shephard/MEBO (until 31/1/21) click to visit survey
click to Read more/less

Prof Elizabeth Shephard is conducting a TMAU fact-finding survey for UK RESIDENTS. She plans to use it to raise awareness with decision-makers, such as perhaps MPs. It closes 31 Jan 21.

who is the survey intended for ?
UK residents who identify with TMAU

Living with TMAU study

We invite you to participate in a research project entitled ‘Living with TMAU’.

click to visit survey

survey full url :

Participation in the project will involve completion of a short questionnaire, which aims to capture the experiences of those living with the condition. There are two questionnaires.

For individuals with TMAU over the age of 18

For a parent or guardian of a child with TMAU.

The results from the questionnaires will be compiled to produce a report that will be available for you to use, for example, to lobby your MP. The findings will be used to reach out to policy makers in the UK to have TMAU recognised as an invisible disability and to make people aware of what it is like to live with the disorder. The report will be made available on the MEBO, UK website.

To complete either questionnaire you must be over 18 and resident in the UK. The questionnaire responses are anonymous and no personal identifiers will be collected.

The questionnaire closes 11:59 pm (GMT) Sunday 31st January 2021.

MEBO Metabolic Malodor Survey (international) for Dr Hazen click here
click to Read more/less

survey for ANYONE who identifies with METABOLIC MALODOR

begun : Oct20
end : no ending for now

Regular readers will know that Dr Stan Hazen et al at Cleveland Clinic are developing a TMA-blocker pill, as they proposed in a 2011 paper that TMAO is a factor in CVD. Recently Dr Hazen and colleagues contacted MEBO as they have always thought they could also help with TMAU. This survey is to give them an idea of the 'state of the community'. It is a "version 1". They may not even look (though they have access permission), but it could be useful to give them an overview of the community

MEBO had a zoom call with Dr Hazen and his team in October. Another zoom call is planned when they have time

This is a GOOGLE FORMS survey

short url for survey :

current participants : 113 (update 18dec20)

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


Post a Comment