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PostPosted: Tue Mar 08, 2016 8:30 pm
by Sallybow
I have recently been diagnosed with tmau,I've completed a 2 week course of antibiotics am taking b2 twice a day aswell as probiotic drink also doing a low choline diet and I don't feel like it's making any difference does anyway else have this problem? Need some advise please

Re: Diet

PostPosted: Fri Mar 11, 2016 5:46 pm
by PinkPanther
If you've been diagnosed, isn't there an NHS dietician who can help you with your diet? I haven't been diagnosed, so I'm reluctant to give advice in case it's wrong for you - everyone's different...

It's still early days for you yet though. If you've been eating the wrong foods for years it might take a while for the new diet to fully work. Some people say to give any new diet up to 6 months for the full effects to show.

Stay away from coffee, processed food and sugar where possible. They're not good for anybody. Also, cruciferous vegetables can be a huge trigger for us. Dairy too.

Are you keeping a food diary? I find it really helps to write down everything I eat and drink - If I get a really stinky day I can refer back to see what might have caused it.

I hope you get some improvement soon.

All the best.

Re: Diet

PostPosted: Fri Mar 11, 2016 8:56 pm
by Sallybow
Thanks for your advice
Defo need to start a food diary. I've seen the dietitian at Salford hospital a few weeks ago after being diagnosed with tmau she gave me a spreadsheet with choline amounts in food and I didn't realise it can take 6 months for improvement and to be honest it's a total lifestyle change for me ie I love chocolate, red wine, coffee, meat and fish lol. I need to get some active charcoal over the weekend and do you know if a probiotic drink or tablet is better or both?

Are you waiting to get diagnosed? Mine was a long process and took a while but got there in the end and it just wasn't me being paranoid, hope you get your answers soon

Thank you for getting back to me getting more positive


Re: Diet

PostPosted: Sat Mar 12, 2016 1:39 pm
by PinkPanther
Hello Sallybow :)

I've never been tested for TMAU, but I've had a metabolic BO condition nearly all my life. That's why I'm reluctant to give advice, I have the symptoms of TMAU, but who knows what other undiscovered causes of this kind of rare BO there might be? Personally (and it's jmho) I don't think the TMAU diagnosis explains everything about this condition.

The 6 months I mentioned is a general diet-change thing, not specific to TMAU. You might find improvement well before that so don't worry. It's up to 6 months - 2 weeks isn't a long time, but I'd have thought you'd notice at least some improvement by now from changing your diet unless you're also eating or drinking other triggers without realising. They might not necessarily be things that are high in choline. Alcohol for example. And sugar. I know from personal experience that cutting out as much sugar as possible has a definite effect on my smell. Any cruciferous veg too, even something like watercress or rocket has an effect on my odour. Like I said; everyone's different. You'll learn by trial and error, that's why a food diary can be helpful. I've had this for forty years and I'm still learning which foods make my smell worse. :(

I don't know about the probiotic question, but if dairy is a trigger for your odour then obviously a dairy based drink (for example, yakult) wouldn't be the best choice. So it all depends really on what your triggers are and what else the drink contains! If the dietician recommended you take a particular pro-biotic then I'd say give it a good trial but go back to them and tell them if it's not working and ask for something else. I take capsules, but I've also taken a drink called VSL#3 in the past. Not sure that it helped me tbh, but others have spoke highly of it.

Hopefully you'll get a reply soon from someone who's been diagnosed who can give you some help.

Re: Diet

PostPosted: Sat Mar 12, 2016 3:30 pm
by Lisa
Hello you two,

I have, like a few others, been trying, with success, the GrapeSeed Oil, GrapeSeed Extract, Fruity Extra Virgin Olive Oil, with low choline diet.
Quite a few of us have noticed a definite improvement, me included.
It might be worth a try, the above ingredients contain DMB, which helps get rid of TMAU in our stomachs.
If you Google it you will get more information.
I have been on this religiously now for nearly a month, I'm very impressed, to say the least.
Hope this helps.

Re: Diet

PostPosted: Sat Mar 12, 2016 5:03 pm
by PinkPanther
That sounds very encouraging, Lisa. I'll have to look into that, thanks :)

Re: Diet

PostPosted: Sat Mar 12, 2016 10:15 pm
by Tenacity
Hi Sallybow,

I'm sorry to hear that you've been trying so hard with the diet and antibiotics and are yet to get anywhere. Do hang on in there - I'm sure something will 'click' that makes it a lot easier further down the line.

Well, first of all you are absolutely doing the right thing by seeing the dietician, as you will need to have your nutrition monitored to check you're not becoming deficient. That being said, I've been told some strange things by dieticians in my time, and I think we're such a small patient cohort that they tend to skim the literature a bit when making plans for us. The best thing I ever did when I first saw the dietician was to skip right ahead to the references she'd used to compile my meal plan, read anything I hadn't already read, and appraise the data for myself.

Did your dietitian *just* give you a list of low choline foods? Because this on its own is not sufficient. There are other precursors to trimethylamine that you will need to avoid, particularly:
-Torula Yeast
-Soy Lecithin (E322).
You will need to read the labels of packets carefully to avoid these. Better still, only eat things you've made yourself from scratch with fresh ingredients, and always drink plenty of water.

Do you mind if I ask what you *have* been eating?

Obviously I am not advocating such a radical diet as this long-term (it would be bad for your health, and you should never follow medical advice form random people on forums anyway - haha), but had you considered giving yourself 2-3 days of just eating the lowest possible choline foods ever and then adding things back in one at a time to see what your triggers are? By the lowest possible choline diet, I am thinking of things like just egg white omelettes, peppers, cucumbers, tinned pears, green or herbal teas etc with small amounts of carbs to stop you from fainting from hypoglycaemia (e.g. small amounts of white rice OR a handful of low fat oven chips OR tiny amounts of white, egg-free spaghetti etc). By the way, the official line is that you should notice a radical difference after just 2 days on the low choline diet. It personally takes 3 days for me, and that is only if I am not on my period or suffering physiological stress from colds etc. Nevertheless, if you did want to go down the 'adding things in' route, it should be doable over a relatively short period of time.

Maybe talk this over with your dietician to see what they think??

Good luck!


Re: Diet

PostPosted: Mon Mar 14, 2016 10:15 am
by Sallybow
Thanks lisa will add that to my food list

Re: Diet

PostPosted: Mon Mar 14, 2016 10:34 am
by Sallybow
hey pink panther
I hope in the future they find the answer to your bo condition.I thought waiting 2 years or so was unbearable its a long process.Thankyou for your advise about yakult will defo be not having this again :lol:

Re: Diet

PostPosted: Mon Mar 14, 2016 10:47 am
by Sallybow
Hi Tenacity
looking at what your saying my diet needs to be more strict.The leaflet given to me did mention soy lecithin and 3 food group low med high in choline content.The dietician also emailed me the usda databasde for choline content to which she explained to me in the hosp.
I still have been having tea with milk,toast with butter,jacket pot with butter,cornflakes with rice milk with some fruit in between meals.So going forward am just going to have fresh fruit and veg green tea see how I go on that for a week.I have tmau 1 does this make a difference to anything :shock: