Disappointed - negative result :(

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Disappointed - negative result :(

Postby Sarah25 » Tue Mar 08, 2016 7:38 pm

Good evening all!

Although I've known that something has not been right for many years, I've only just come across the condition TMAU. It was my GP who suggested I do the urine test after I presented to him with IBS that was out of control, and faecal body odour and breath. I did a bit of research and HALLELUJAH! Sounds exactly like what I'm experiencing! But then I'm told that my urine sample was fine :? I did the choline load - 400g of beans and 2 eggs at 1pm and 7pm, and then took the urine sample the following morning and it was sent to Sheffield. I wasn't aware of any smells that morning though but I WAS aware later on that day... I seemed to reek, from my breath, my skin, and erm, my bottom :o (I usually can't smell myself though) So my first question is, could it be possible that my urine came back fine because it WAS fine that morning, maybe if I did the test later in the day when I was stinking it wouldn't have been the same result? And if so, perhaps the 24 hour urine test would be more reliable?

I'm sure I read that some GPs can allow you to do up to 3 tests, is that correct? I have another appointment with my GP at the end of the month and was planning on taking him some info and asking for the 24hr test, although I know he was communicating with Sheffield previously about how to do the test and then came back to me saying it was just the single urine test :? so do they still do the 24 hour test or is the one I did standard now?

I stopped eating eggs and beans after the choline load and have definitely noticed a difference in my smell, but then it will creep up on me unexpectedly and in the most inconvenient situations :( Interestingly, I have been smellier when on particular diets that use eggs and beans in LOTS of recipes (slimming world), which I think confirms this isn't just in my head. My second question is, do I go it alone and start the low choline diet without any professional input, or wait to see my GP and try to get him to let me either do the test again or refer me to somebody else?

I went to see a naturopathic doctor last year for these symptoms and we did a hair mineral analysis, and when she saw my results she said they would fit the profile of a typical vegan, because for some reason my body isn't absorbing what it needs from the food I'm eating. I should note that I do have a bad diet, I have a major sweet tooth and eat a lot of junk food :( Since then I have been for a bile acid malabsorption test (still waiting on the results) to see if this could explain the IBS (diarrhoea). I don't know how, or if, these problems are interlinked. My main worry is that if I try to do this restricting diet on my own naively I may put myself at risk of more serious vitamin and mineral deficiencies... So what are the next steps? Are there any supplements that should be taken whilst on the low choline diet? I have ordered Champex and I'm going to order some Riboflavin.

I'm a total newbie at this and am already confused about the 1's and 2's after the condition name! I would love to hear from anybody with any tips - are there any particular brands of shampoos/body wash that you use? Are there any supplements that should be taken alongside the diet? Does anybody follow this diet without input from a doctor? Do antibiotics and probiotics make the treatment more effective or is the low choline diet effective on its own?

Thank you for reading, and I hope to talk to you soon :)

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Re: Disappointed - negative result :(

Postby Lisa » Tue Mar 08, 2016 9:29 pm

Hi Sarah,

Have PM you
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Joined: Tue Jul 06, 2010 10:35 am

Re: Disappointed - negative result :(

Postby Lisa » Tue Mar 08, 2016 10:04 pm

Replied Sarah
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Joined: Tue Jul 06, 2010 10:35 am

Re: Disappointed - negative result :(

Postby PoetFire » Thu Mar 10, 2016 10:43 am

Hi Sarah

re 3 tests :
I think that's only Dr Lachmann that has that policy (probably for a negative reason, so stop people wanting more tests). Other Dr's, I guess it's up to them. Worth a try though.

re result :
personally I think people often get a 'false negative'.
I would say you are almost definitely not a 'severe genetic' case, as I guess these will almost always show up in the urine test.
But most I think are sort of 'mild difters', that may drift around the cut-off zone.
Also the Sheffield test is quite conservative.
For TMAU1 you need to be <79%, whereas other labs say <85%, even <92%. So you could be positive at another lab.

People may feel that TMAU is well understood and the tests are rigourous, but really very little has been done past 'stage 1'.
Personally I don't even think it is just trimethylamine that we have a problem with, but with all FMO3 sulfides and amines
But TMAU is the only diagnosis on offer as TMA is all they tested for and still do.
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Re: Disappointed - negative result :(

Postby Sallybow » Thu Mar 10, 2016 12:38 pm

Hi Sarah
Am new to all this to and its mind boggling lol I've just ordered sebemed products they are ph 5.5 which they say is best to use on our skin,can't wait for them to come to try see if they make a difference
Finger crossed
Sallybow :)
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Joined: Mon Mar 07, 2016 12:18 pm

Re: Disappointed - negative result :(

Postby noturbo » Sat Dec 17, 2016 4:14 pm

Hi Sarah. I know its frustrating getting unexpected negetive test results, can be really confusing after you think you've discovered some answers. But try and be positive, maybe the test was right, maybe its not TMAU. But like I said think of the positives... You've narrowed it down, and lets face it, noone wants TMAU. Theres very little you can do to treat or cure TMAU, so while you may still be in the dark. But you've got closer to your answers and atleast when you do find your diagnosis there may be a solution. I'd rather wait a little longer and do a little more investigating if it means theres a cure. I'm not sure of your particular situation but thought i'd offer my opinion anyway lol. There are other things that give similar symptoms to TMAU. The 2 i'm thinking fit your situation are Candida and H pylori. Candida is a fungal overgrowth that occurs in your stomach. H pylori is a bacterial infection, also in your stomach. Now I would have suspected these 2 options just with the TMAU like symptoms. But if I remember correctly you say you have IBS, Diarohea etc. These are all also signs of the 2 infections i've mentioned. Do you ever get stomach pain? Gas? Reflux? Even if you dont imo its still a good possibility this may be your issue. If I was you i'd return to your d.r and request an H pylori urea breath test or stool sample. The blood test is a little unreliable as it only detects antibodies. So it could detect an immune response long after an infection is gone, ie a false positive. And if your infection is long standing your immune system maybe weakened, therefor no antibodies to be detected even though the infection exists, false negetive. So push for a breath test or stool sample. If you are positive then you will be prescribed something called Prevpac, its basically a combination of antibiotics and ppi's. Maybe Amoxycillin, Clarythromicin and omeprozole. After a 10 - 14 day treatment you should be symptom free. I'd also recomend taking a good strong probiotic during and after the treatment. Preferably 50 billion probiotics a day. Also i'd add Mastic gum after the treatment for atleast 2 months. Take a gram in the morning on an empty stomach and a gram in the evening on an empty stomach before bed. If you get a negetive on the H pylori test then look into Candida. Its harder to diagnose and treat but with a little research you can look for typical signs, like a white coated tounge etc. There are lifestyle changes you can make, diets and such, which are easily found online. Search for a guy called Eric Bakker. He has lots of videos on youtube and has written a book called "Candida crusher" I think. There are also a bunch of supplements to help too. Caprylic acid, Pau Darco tea, probiotics... Theres lots if you look.

Anyway hope some of that helps, but like I say particularly that your TMAU like symptoms are accompanied with digestion issues I think this is well worth you looking into. I know you werent happy with your negetive test result, but atleast the alternatives have a solution. Far from being dissapointed, i'd be extatic. TMAU is the last thing you want. So Congratulations on your negetive result lol. And good luck finding the culprit

Much love,

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