newly diagnosed

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newly diagnosed

Postby egglover » Fri Aug 31, 2012 7:40 pm

After 25 years of suspecting I had a body odour problem (I'm 41) I have been finally diagnosed with TMAU. Friends/work colleagues have been dropping subtle (and not so subtle) hints for years but because I can't smell myself/my husband can't smell me I just thought I was being paranoid. It was only when I started running a special needs lego club and kids were coming up to me asking why I smelled so bad that I decided to get tested.

My doctor has put me on a course of antibiotics to help clear my gut but said they are not a long term solution. He said he didn't know of any dietician who could help and basically said there was nothing he could do !

I've been reading all your advice on diet (this forum is a GODSEND) but becasuse I also have coelics ie no wheat I'm struggling to come up with a healthy diet plan on my own.

Has everyone out there had advice from a dietician or are you doing it all by yourselves?

My poo is black (trying charcoal tablets) my wee is green (trying B2) and I feel like I'm about to go crazy !

The cruelest thing about TMAU for me is that I can't smell myself. If I did then at least I could judge what are the best days to go to the supermarket/crowded places. I used to love going to the gym but now I know it's me that's causing the "bad stench" everyone's been complaining about I'm too scared to go.

My son has autism and tourrettes and so I'm used to people whispering behind our backs when we go out but now I've become totally paranoid that they are talking about me and don't want to go out at all.
egglover
 
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Re: newly diagnosed

Postby bigvern » Sat Sep 01, 2012 5:07 pm

hiya egglover - can see where you are coming from - I can't smell myself neither can the Mrs, when I was referred to Dr Lachmann I also met with a Diet specialist who gave me a diet sheet etc. I go to the gym as well and love cycling as you're out in the fresh air away from everyone!..

I think the Doctor is wrong to dismiss a dietician becuse he doesn't know of anyone - you could ask to get referred to dietician and then they should be able to research the condition and make contact with DR L's dietician's who I would hope would help formulate a plan for you to try. In general terms it's about reducing the level of choline in the diet so once the dietician knows that they should be bale to help.

what I would say is don't alter or change your diet without seeing a dietician first :D
bigvern
 
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Re: newly diagnosed

Postby egglover » Sat Sep 01, 2012 7:20 pm

Thanks for that advice. I'm afraid the first thing I did when I tested positive was to try to elimate all offending foods and I'm absolutely exhausted all the time. I will go back to the doctors and ask to get referred to a dietician. I'm just worried he/she won't have a clue about TMAU as my doctor certainly didn't - but I know I'm not getting enough protein so desperately need advice. It's SO nice to know I'm not alone out there :) On the one hand I'm pleased I've finally got a diagnosis but it takes so much courage to get out there and continue a "normal" life.
egglover
 
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Re: newly diagnosed

Postby timid » Mon Sep 17, 2012 11:21 am

Hi Egglover, i know how you feel when you say you don't want to go out anywhere now, that's how i feel, even to the shops is daunting for me, i always feel like i smell bad, and some days when i feel i'm ok and there isn't a smell, someone will rub their nose or hint at me, and my hopes are dashed :( It sounds like you're stressed with your son as well as having to cope with tmau, and we all know that stress doesn't help this condition, i agree that you should go back to your dr and get a referral to a Dietitian, your dr sounds like he needs a kick in the backside lol, hope you get help with the diet x
timid
 
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Re: newly diagnosed

Postby egglover » Tue Sep 18, 2012 9:01 pm

Thanks timid,

I think you are right when you say stress makes it worse. If we are in public and my son is having a meltdown then I get super stressed (as well as hot and sweaty). I also think I'm approaching an early menopause which might be why I'm getting more complaints about my odour recently. My doctor definitely needs a good kick. Can't believe he just told me to go on the internet to find what foods to eliminate myself. I have another appointment with him next week to insist on a referrel to a dietician. We have booked a holiday to the US next year and I'm dreading sitting on a plane for 8 hours. Normally I try to sit next the toilets when I go on public transport and then people might assume that's where the smell is coming from. I must be the only person on a plane who is jumping for joy at getting a seat next to the loos !!!
Has your dietician been helpful or do you get more information from forums such as this?
egglover
 
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