Advice please!

[sal]

Hello All, I received diagnosis of TMAU today. I am due to have a blood test to determine type of TMAU . I can find very little information of diet plans, only lists of what to avoid. Does anyone have an advice they can share?

[sweatybetty]

Hello Sal

First of all sending positive thoughts your way!

I was in the same situation as you 2 months ago and I received minimal information from my GP other than to avoid fish (particularly seafood), eggs (yolks), legumes and most meat.

I was referred to a specialist in London (Dr Lachmann) and recently had an appointment with him and his dietician. If you see a specialist they should help you further with your diet. The list of TMAU trigger foods is far more extensive than the broad categories outline above. Based on my experience, I would ask for specialist help and avoid being excessively restrictive on your diet beyond the broad categories (especially if you have any other medical issues) until you have been given professional advice.

There are people on the forum far more knowledgeable than I am but I thought I'd share what I have picked up since diagnosis.

Some questions

Assuming you are UK based?
Have you been referred to a specialist yet?
Has anyone given you the US database link - this lists foods by the choline content. It is not easy to use as many of the foods listed as US branded and as such not applicable There is also a area on this forum which allows you to search by food category - this is easier!

Other useful sources of information (in case you are not aware of these)
MEBO site - this has a webinar with interviews and webinars from experts in the field. A good one to listen to is the discussion with Dr Lachmann and his dieticians.
There was an interesting food doctors episode where a lovely lady with TMAU was being given advice - if you google this hopefully you will find it!

Take care

sweatybetty

ps I think generally on the site we are discouraged from sharing diet plans as your overall health should be probably be assessed before embarking on a diet which can be quite restrictive.

I tend to eat a lot of salads/veggie curry and fruit particularly strawberries. I've never been a meat eater and ate fish very infrequently so cutting out these was not a huge issue for me. Personally I still eat some cheese but am waiting for my results back from the specialist to see whether I should restrict this. Have cut right back on yoghurt and other diary and minimised milk. Lecithin often found in margarine/ready meals and some chocolate ( )can also be a no no.

[sal]

Hello,
Thanks for the positive thoughts.
Thank you so much for the information. I am in the U.K.
I will request a specialist referral and hopefully that'll help.
I've been reading articles and found the U.S. list of choline content of foods.
Can I ask if you've just followed a diet of if you've done anything else? My GP mentioned antibiotics etc but was unsure if I sh take them etc.
I work full time in a stressful job and would welcome any ideas people have for managing this as it seems to be a big trigger?

Sal

[sweatybetty]

No Problem

This is a really frustrating but horrid condition – on the one hand it is benign i.e. it is not going to make you seriously ill but the social and emotional consequence can be life limiting.

How did you do the test – did you request it? Did you choline load? Presumably your diagnosis was from a urine test – were the results suggestive of TMAU1 or TMAU2? On this forum there have been threads on analysing the test results and there are some extremely knowledgeable people who helped me when I posted my test results. Not sure what your GP has told you but try to get the full test report from the testing centre.

The dermatologist registrar prescribed a two week course of metronidazole (from the research I have done I think there are about 3 different anti b that can be prescribed for this condition)

I was left completely in the dark and only by contacting the scientist who did the test and the dietician at UCL did I gain much useful information. In my case this led me to take 2 week course of anti Bs and then follow this with probiotic theory. The idea being that TMAU is exacerbated due to bad bacteria in your gut. The ant Bs nuke this (indeed they nuke both good and bad bacteria) and then you introduce good friendly bacteria through probiotics. Unfortunately in some cases the bad bacteria grow back and the cycle begins again.

Before the consultant appointment the dietician was only able to give me general information (US database). I constructed my own diet – fruit /soups /salads/vegetable curry/paneer curry/grilled peppers/ stuffed peppers/mushrooms/rice/white breads which I used for the 6 weeks before my consultant appointment.

What I ate before the appointment had some commonality with the diet plan I was then given by the specialist dietician.

With respect to your question about stress I am not sure what you do for a career and the other potential stressors in your life. I can only offer my POV and experiences . I worked in what most people would consider extremely stressful roles long hours /difficult work (IB/Corporate Finance Director) until my early 40s. I experienced issues in these roles due to the TMAU but some of the most unpleasant incidents were when I had a temporary job as a student catering at a festival and when (this year)I took a far less stressful less senior role at a Local Authority. In both these cases the bullying /harassment from other colleagues was very unpleasant and I left the LA job due to the people. For me the most stressful issue is the reaction of other people and feeling excluded and in my experience these can happen equally in stressful jobs and non stressful roles. For the last few years I would not consider myself externally stressed – I am not currently working and I have a dog (he makes me happier!) but TMAU is still causing me problems. I guess only you can assess if your work is stressing you and exacerbating your TMAU or whether it is your TMAU (and potentially colleagues negative reactions to this) which is stressing you and causing a work stress spiral!

I think most people on here have experienced the frustration of the initial lack of knowledge - my GP had never heard of the condition. It is hard but hopefully your GP will support you to get specialist input.

[sal]

Hello,
Thanks so much for the information.
I haven't seen the results yet, I got my result by phone as couldn't make it into surgery when Dr was free. I have asked for a specialist referral when I picked up my blood form today. My GP is very good so am sure the referral will be made.
I work in mental health field , with people in crisis.
Thanks for the menu ideas, I've been out to the shops and got new foods in ready to make a start.

Best wishes

Sal