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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

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TMAU UK end total:262
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TMAU (Dominican)
Metabolomic Profiling Study
NCT02683876

Start : Aug 2016
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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

Thursday, May 15, 2014

Protein and Fiber in Low Choline Diet




PLEASE READ THE FOLLOWING POSTS
On this blog and on RareConnect

Letter from Charlotte Ellerton
Specialist Dietetic Practitioner - Metabolics
For
RareConnect
(presented by Rob Pleticha)

It can definitely be a challenge to obtain adequate protein and fibre if you are reducing the choline content of your diet, as typically high protein foods do tend to contain more choline. Many wholegrain foods also contain more choline than refined carbohydrates (e.g. wholemeal or wholegrain bread contains more choline than white bread). Both protein and fibre are essential nutrients for health, so we do not advise cutting these out all together, but instead looking for alternatives and aiming to keep your diet as varied as possible.

If someone feels that eating meat exacerbates symptoms and is avoiding this on a regular basis, I would encourage the use of lower choline options such as egg whites - these are a fantastic source of protein, and very low in choline (it is the yolk of eggs which is choline-rich).
Meat products such as sausages contain less choline than meat itself (due to the addition of different ingredients), and poultry is lower in choline than red meat, so you may opt for chicken or turkey instead of beef or lamb. Of the patients we see, many are able to tolerate including meat in their diet, but perhaps less frequently or in smaller portions. According to the USDA database of choline content of many cheeses are actually very low when compared to other high protein foods, and cheese is an excellent source of protein.

Cereal products are also a source of protein - potatoes, bread, pasta and rice all contain some protein, so including these foods in your diet will provide protein. There are also a number of protein rich foods that contain moderate amounts of choline - beans, pulses and nuts for example, so small servings of these could be included in the diet in moderation.

Fibre can also be restricted if someone is following a low choline diet, but there are options - for example, brown rice is naturally low in choline and fibre-rich, as are sweet potatoes (eaten with skins) and porridge oats.

Many fruit and vegetables also contain minimal amounts of choline and are an excellent source of soluble fibre. Oat bran contains moderate amounts of choline, and could therefore be introduced gradually into the diet as an additional high-fibre source.

If you have concerns about your diet then my advice would be to seek more support from your dietitian, who can look at your diet specifically and make individual recommendations. There is not one diet that suits everyone - different people tolerate different amounts of choline, and it is important to eat as balanced and varied a diet as possible.. We also encourage people to relax the diet whenever they feel they can as it is exceptionally restrictive and following it strictly all the time can potentially result in malnutrition. Through a combination of diet, plus potentially use of antibiotics and also perhaps some of the other supplements (charcoal/copper chlorophyllin) we hope that individuals can feel more confident in managing their symptoms whilst also ensuring they are not compromising their health.

Thanks,

Charlotte

Charlotte Ellerton
Specialist Dietetic Practitioner - Metabolics

Translated from English into Spanish
by Maria de la Torre
for El Blog de MEBO


María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
www.mebo.com.br/
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