Have you ever walked into a food market in the evenings where the stench of rotting fish makes it unbearable to walk through without gagging? Now image what it would feel like if you smelled like that —- all the time….
Yes, Fish Odour Syndrome, or Trimethylaminuria, is a very real condition. The stench comes out of hair and body because certain food compounds cannot be digested and are released from the body via sweat, urine and saliva, resulting in body odour and bad breath that smells like stinking, rotting fish.
What Exactly Is Trimethylaminuria?
Trimethylaminuria is a rare metabolic disorder that is genetic, where the body simply cannot breakdown trimethylamine found in food products like meat and leafy green vegetables. This smelly chemical is produced in the gut when choline-rich foods and proteins are digested. For sufferers, the chemical that is contained in many food products simply has no outlet, since the body cannot process it, and it builds up in the body before it is released through sweat, urine and breath.
In a normal body, an enzyme called flavin-containing monooxygenase 3 (FMO3) is produced by the liver to ensure trimethylamine or TMA gets broken down into odourless molecules of trimethylamine N-oxide or TMAO and gets released from the body via excreta. Most people have an FMO3 gene, which provides instructions for making this enzyme. In most people with Trimethylaminuria, the FMO3 enzyme is missing or their FMO3 gene doesn’t work as well as it should. This allows trimethylamine to build up in the body.
Usually, those with Trimethylaminuria have inherited the faulty FMO3 gene from both their parents. In other words, each parent will carry one copy of the faulty gene and be a ‘carrier’ of the condition. Carrier parents may not have symptoms themselves, or may only have mild or temporary episodes of body odour.
Some Facts About Trimethylaminuria
Trimethylaminuria is listed as a rare disease by ORD or Office of Rare Disease of National Institutes of Health (NIH), yet afflicts men, women and children all over the world. The condition seems to be more common in women as compared to men for unknown reasons, and the smell tends to get worse around menstruation. It can also be aggravated around puberty, menopause, or when starting (or just after stopping) contraceptive pills. Scientists at National Human Genome Research Institute believe this could possibly be due to higher levels of progesterone and estrogen (female sex hormones) levels in the body during these times.
Most sufferers are born with the condition, though it can also become apparently only when children are being weaned. Some children who suffer from the disease may have only a temporary form that suddenly disappears as they grown older. However, sometimes the condition starts in adulthood.
Not everyone with Trimethylaminuria will have the faulty FMO3 gene. Some cases may be caused by an excess of certain proteins in the diet, or an abnormal increase in the gut bacteria that produce trimethylamine. A few cases of Trimethylaminuria have been linked with liver or kidney disease, where the FMO3 enzyme is underactive.
How Is Trimethylaminuria Diagnosed?
Trimethylaminuria is diagnosed with a urine test that measures the ratio of trimethylamine —the fishy-smelling chemical, to trimethylamine N-oxide — the odourless version.
Patients are asked to consume choline tablets and several urine samples are collected over the 24-hour period that follows for an accurate diagnosis. If you have Trimethylaminuria, you’ll have higher-than-normal levels of trimethylamine in your urine.
Gene testing can also be carried out, to look for any genetic changes in the FMO3 gene.
Can Fish Odour Syndrome Be Cured?
Sadly, there is no cure or approved drug for treating Trimethylaminuria at the time. No medicine or treatment can rid patients of this embarrassing and harrowing metabolic disorder. However, the disease can be managed with lifestyle changes.
- Changes in Diet
As is obvious, foods containing choline or those that break down in the gut to produce excess trimethylamine are best avoided. The list is rather extensive, and includes:
- Soy products
- Brussel sprouts
- Milk from wheat-fed cows,
- Lecithin and lecithin-containing fish oil supplements
- Seafood (Freshwater fish have lower levels of trimethylamine N-oxide)
- Other Lifestyle Changes
It’s best to avoid extensive group exercises to avoid being in an embarrassing situation, since the stench is often given off by sweat. Many doctors also recommend mild or natural laxatives to speed up the digestion process, so less amount of trimethylamine is produced while the food moved through the bowels.
Other medications are available to manage the disease, which your doctor can prescribe based on your situation.
Patients are recommended soaps and shampoos that maintain pH levels between 5.5 and 6.5 to remove trimethylamine traces from skin and hair.Trimethylaminuria can be very upsetting, potentially affecting your personal life and career. If you feel stressed and alienated because of the disease, counselling is best to help deal with the stress and depression.
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