Finally think I have found my problem with Tmau..

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Finally think I have found my problem with Tmau..

Postby pinkerton » Sat Mar 07, 2015 5:18 pm

Hi all,

Newly registered today after I think finally finding my problem online on Thursday.

I have been plagued with this problem for years and never knew what it was. I started getting closer a month or so ago when I stumbled onto leaky gut syndrome, and then after only being in work after freshly showering for 10 minutes a colleague ( and friend ) said, " whats that fish smell " it only started when you came in. I brushed it off but was dismayed again thinking I had to do my usual routine of trying to avoid everyone in the offices as much as possible. Luckily I work in my own office at least 4/5 days a week and I dread if I was ever moved to a shared office.

Anyway the fish comment ( first time I had ever had that one, its usually a whos farted comment, although I have noticed myself a gas like smell when its bad ), led me to Trimethylaminuria. It just seems to make the most sense at the moment although I have not been tested I have a doctors appointment for 18th and hope he will refer me.

For years I just thought this was poor hygiene particularly in the downstairs area. I have sprayed deodorant on my bottom, I have had aftershave down there, talcum powder and now I realise that its coming out of my pores and breath.

My daily office routine involves spraying myself with deodorant whenever I have to visit others, plastering myself in aftershave. I dont know if this has any affect at all, but surely it masks some of the smell or at least throws another smell into the mix. As I say I work alone a lot of the time and am lucky I have time to do that before I visit others. I dread being in groups in case there is a fart comment and then the inquisition begins of who is it. I dont know if some people know I smell and they talk behind my back or if there is still some confusion there at times.

The fact is if I am diagnosed and daft as it is, I hope I am because I have this problem whether or not and then I may even tell colleagues about it, when I can clearly tell them its something real.

After finding out about Trimethylaminuria a couple of days ago I have already started to try and alter my diet. My god I ate eggs all the time, fried, boiled, omelettes. I would eat 4 boiled eggs with toast, I drank lattes, and I only hope that making a massive change to my diet will help me. It seems the diet is hit and miss with people, but if I have literally been adding fuel to the fire then I hope changing my diet to be as good as possible will impact my condition.

I do seem to have gone through phases where it has been worse than others. I had a 4-5 year employment where it wasnt on my radar, but then I was in my own office again and it was a very boys environment, so there was always someone parping anyway which I guess made me less conscious.

I dont know if my family know I smell, there has been the odd comment, but very few and it was usually " had the dog farted ". Maybe I will tell my wife and she will say " oh my god that makes so much sense because you do smell ".

Its a living hell at times, I avoid going out with colleagues because I just have no clue if I smell or not. They could be stood there thinking that I stink or maybe there is no smell at all.

Since yesterday all I have had to eat is

Yesterday 1 portion of white rice, some cooked chicken.

Today 2 egg whites as an omelette with a couple of red pepper thrown in.

I plan to eat later, some more white rice and chicken with some more peppers.

If I can get rid of the smell with white rice and peppers and chicken, so be it, thats what I will do. I only hope I can improve it to some extent. I know it may never go away but if my diet could make it much, much better than I would take that. Surely the less I eat and the less choline enriched food I eat the smell must surely become less?

Anyway hi to all, after only just finding out about TMAU I am still utterly confused but hopefully I will learn more and more about the do's and dont's as I go along. I bought some johnsons baby soap today for the neutral PH, ( thats a good thing right? ).

Its great to find this forum, I have already read many, many of your wonderful posts and I just hope now I am pretty sure what I have I can at least help myself as much as possible with diet and possibly some supplements. The only other action I had taken when I thought I had leaky gut was to take a yakult every day and have a spoon of coconut oil which I had heard could help, but perhaps with my diet changes I can find a little more success, some of the foods on the choline chart had me asping, eggs in particular but there was a lot on there that I ate so much that it must have been having a profound affect on my smell ( I hope it was and I can alter ).

Sorry for the long post, but again hi :D
pinkerton
 
Posts: 7
Joined: Sat Mar 07, 2015 4:38 pm

Re: Finally think I have found my problem with Tmau..

Postby Lisa » Thu Mar 12, 2015 9:01 pm

Hi Pinkerton, and welcome.

As you have probably seen by reading the posts, your story sounds very much like everyone else's.

I haven't much time to write what I would like, sorry, but I will try sometime over the weekend.

Just be careful on the diet, you should really be under a GPs supervision while on it, it is very strict, very hard, and not taken lightly, we still need some choline for brain function and other things, we also need vitamins which we would normally get from " normal" food, please make sure you are regularly monitored, I know some of us lost a lot of weight when we first started the diet, The Heroin Chic Look I believe Kitty called it. :o

Will look in at the weekend, take care.
:D
Lisa
 
Posts: 412
Joined: Tue Jul 06, 2010 10:35 am

Re: Finally think I have found my problem with Tmau..

Postby Lisa » Thu Mar 12, 2015 9:01 pm

Hi Pinkerton, and welcome.

As you have probably seen by reading the posts, your story sounds very much like everyone else's.

I haven't much time to write what I would like, sorry, but I will try sometime over the weekend.

Just be careful on the diet, you should really be under a GPs supervision while on it, it is very strict, very hard, and not taken lightly, we still need some choline for brain function and other things, we also need vitamins which we would normally get from " normal" food, please make sure you are regularly monitored, I know some of us lost a lot of weight when we first started the diet, The Heroin Chic Look I believe Kitty called it. :o

Will look in at the weekend, take care.
:D
Lisa
 
Posts: 412
Joined: Tue Jul 06, 2010 10:35 am

Re: Finally think I have found my problem with Tmau..

Postby Lisa » Thu Mar 12, 2015 9:02 pm

So good I said it twice! :?
Lisa
 
Posts: 412
Joined: Tue Jul 06, 2010 10:35 am

Re: Finally think I have found my problem with Tmau..

Postby pinkerton » Sun Mar 15, 2015 10:01 am

Thanks for your reply, it was much appreciated.

Diet wise I am trying to keep it very simple at the moment.

For around a week now my main meal has been white rice, chicken ( coated in honey ) and peppers with a little garlic and chilli salt for flavour.

I have completely cut out caffine and am just drinking water ( as much as I can ) and diet soda.

Other snacks and meals consist mainly of

Tomato Soup
Chicken Noodle Soup
Canned Pears
Canned Peaches

Outside of that I dont think I have eaten any other kind of food at all.

I have just ordered some riboflavin and activated charcoal supplements and I take a yakult every morning.

I need to copy the choline items and amounts into a spreadsheet so I can sort by lowest amount and hopefully add some more low choline foods to my diet.
pinkerton
 
Posts: 7
Joined: Sat Mar 07, 2015 4:38 pm

Re: Finally think I have found my problem with Tmau..

Postby Lisa » Sun Mar 15, 2015 11:29 am

Garlic & chilli salt will add to the odour.

General rule of thumb is, only eat tasteless white food! :roll:
Lisa
 
Posts: 412
Joined: Tue Jul 06, 2010 10:35 am

Re: Finally think I have found my problem with Tmau..

Postby pinkerton » Sun Mar 15, 2015 1:39 pm

Lisa wrote:Garlic & chilli salt will add to the odour.

General rule of thumb is, only eat tasteless white food! :roll:


Will such a small amount of food affect things? I could understand eating a big piece of liver having an effect, but a sprinkling of chilli flakes, garlic and salt?

Scary !!!
pinkerton
 
Posts: 7
Joined: Sat Mar 07, 2015 4:38 pm

Re: Finally think I have found my problem with Tmau..

Postby Lisa » Sun Mar 15, 2015 2:26 pm

Trial and error Pinkerton, everybody is different, but, personally I steer clear of onions, garlic, leeks etc, and defiantly chilli's.
Lisa
 
Posts: 412
Joined: Tue Jul 06, 2010 10:35 am

Re: Finally think I have found my problem with Tmau..

Postby pinkerton » Sun Mar 15, 2015 2:57 pm

Lisa wrote:Trial and error Pinkerton, everybody is different, but, personally I steer clear of onions, garlic, leeks etc, and defiantly chilli's.


This is where I struggle to get my head around things. Don't we all have the same thing? Isn't choline, choline?

I can understand perhaps some have it worse than others but why would certain foods affect some people more than others.

That doesn't make any sense to me? Are we just seeing things that are not really there? Are bad days just bad days despite what we have eaten?
pinkerton
 
Posts: 7
Joined: Sat Mar 07, 2015 4:38 pm

Re: Finally think I have found my problem with Tmau..

Postby Lisa » Sun Mar 15, 2015 4:30 pm

We all struggle to get our head round it, what I'm saying is you might be ok with Garlic etc, I would imagine most of us aren't, that why I say trial and error, this disorder is extremely confusing/ infuriating.

Maybe Poetfire can answer your Q's.

Maybe get tested first and take it from there?

I don't think any of us fully understand this disorder, we just have to work out what does and doesn't work for us.
Lisa
 
Posts: 412
Joined: Tue Jul 06, 2010 10:35 am

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