Newly diagnosed

[Jackie]

Hi. I'm Jackie. I've just had my test results back and have been diagnosed with TMAU. My GP has told me to start a low choline diet....where do I start?

[Lisa]

Hi Jackie,

Welcome, if you are starting the restricted diet, make sure you are regularly checked by your GP, and monitored carefully.
Look on the diet board on here, it will point you in the right direction.
Any Q's you have, there are plenty of people on here willing to advise.

[beautifulsoul39]

Hi welcome,first thing i would do is get a blood test done to check for nutritional deficiency,because a tmau diet will leave some poorly,get yourself a filtered water bottle keep with you at all times ,next check out your tongue this will tell you if your bowel transit time is sluggish,thick coating at back of tongue look up different points as each cordinate to where toxins are overloading ,cut back all yeast and limit dairy ( only under advice if doc says ok) ,things that will make you stink to high heaven chocolate,chewing gum will make you reek too it has soya in and it constantly release gas from tmau and rebuild its back up ,invest in ph level soap etc ,buy charcoal works for 1-2 hours takes 20 mins too work do not use regularly as will cause severe constipation,buy turkey mince instead of beef ,turkey bacon ...i could say more but not aloud basically its a low protein diet ,remember if you have tmau you never completely get rid of it but you can lower it too acceptable level mouthwash etc only works very very short term don't waste your money trust me ive been to harley street and spent a huge amount of money before i found out it was tmau ,never ever go without food you will make smell appear and it would be a pooy smell,good luck you want too chat im on here most of time because i don't want people to struggle like i did trying to find answers so i do my own reasesrch from trial and error and luckily i ask people what smells i give off on low choline its been " mouldy old vitamins" rotten potato salad",pumpkin (i quite like that one hahahaha) burning,smoke,farts,poo,cat wee etc not every can smell you only 1 out of every 4 can smell you on a good day xx

[sweatybetty]

Hi Jackie and welcome - sorry to hear of your diagnosis

There are some very knowledgeable people on here who have been dealing with this for a while.

I was in your position a few months ago - more or less told to do low choline but that was it until I was able to obtain a consultant referral and get the expert input of the dieticians. In the three months gap between diagnosis and consultant appointment I cobbled together a plan (vegetables/fruit/vegetables)that was broadly OK but I later found out that some of the things I was still eating in small quantities were a problem (chocolate )

I'm not sure what your current diet is like - for me I was principally vegetarian so low choline involved less change than for others.

As per the good advice given by others it is very important to obtain some medical input as reducing choline too much can be problematic and you need to consider the implications on any other medical conditions you may have.

In very general terms the following foods need to be restricted /avoided: meat/sea fish/shell fish/brassicas (sprouts/cauliflower/broccoli) /egg yolks/chocolate /soya lecithin/milk

But you do need to be careful and I hope your Dr is able to refer you for dietary advice as personally I think it is very important you receive medical input in devising a sensible eating plan - this condition is hard enough to manage without suffering nutritional problems.

Has the Dr prescribed anti-B / probiotics yet?

Good luck

[need help please]

where is this diet board ? on this site ? sorry about your diagnoses my test is still in the mail for me to start testing !

[beautifulsoul39]

You will need to see a dietician do not attempt to remove choline from your diet as nearly every single food has it you would become very poorly,also starving your self will produce a faeces smell ,you need all your bit levels checked,iron,thyroid any allergies etc before you start ( speaking from experience) once you've had your internal mot checked look at your tongue which is a map to all points in body which are suffering eg big crack down middle means you have a week spleen etc black patches on tongue means your liver is seriously in need of tlc ,your diet is basically a low protein diet and falls into a lot of vegan ,you can actually eat a huge amount eg watermelon you can eat quite a lot of this

[sweatybetty]

Hi need help please

Not sure if I am interpreting you correctly but if you are waiting for the test does this mean you have not had a diagnosis yet and at the moment suspect you may TMAU?

If it is the case that have not tested yet/ you are not as yet confirmed as TMAU it would not be the right thing to do to restrict choline before the confirmatory test as this could skew the result in marginal cases.

[beautifulsoul39]

Totally agree 100% spot on if you start low choline will even possibly give you a negative result , the diet is gruelling and you would need doctors to refer you too dietician etc i was fourtunate as i had more than one doctor dealing with the tmau and they contacted the big peeps in London so i know my advice is legitimate and of course what works for me may not work for others ,you need to be under guidance because you will loose a significant amount of weight not in a good way ,i know the waiting part is hard we've all been there