One condition described in detail: Fish-odour syndrome

Thats what Ellie told about it…

Ellie James (42 years old) is traumatized by a rare condition. For the past 11 years she has suffered from trimethylaminuria also known as the fish-odour syndrome. Hormones, illness and diets can cause a particular smell but for Ellie it is much more complex. Her different odours are such as sulfurets, ammonia, band rubber, rotting garbage and marzipan.

When you have fish-odour syndrome your body loses the ability to break down a compound in certain foods. This causes that you give off unpleasant smells. The smells range from fish to rotten eggs. Living with this condition is often socially isolating. It can result in depression, and other psychological problems. It is not only that it just smells disgusting. You can be spreading the smell for 15 feet. That is a big problem if you are in a small room or if you are on public transport for example.

When the smelling happens you will see people start rubbing their noses. Because you are actually gassing them, their eyes can water, they can cough or can sneeze.

For some people the symptoms are not always there but unfortunately for Ellie they are. She constantly smells. She stopped going out in public and did not want to go to the shops anymore. She lost jobs because of this. Ellie says that she has really, really suffered. At one stage she was even borderline-suicidal. Borderline-suicidal means that you constantly and again and again have suicidal thoughts but that you don’t seriously commit suicide. It is important to get help then.

Ellie went to several GPs. None of them knew what she had. Most suggested that she had a mental health problem and she could imaging it. After 11 years living with this condition, Ellie only recently got a formal diagnosis. She researched het condition and symptoms on the internet. When she read that her odour probably could be managed through a diet she changed her nutrition. Ellie took the extreme step and cut out all but a hand full of foods. Ellie researched which foods are hiding choline  and completely cut them out. She said that she probably reduced her odour by about 70%. She is worried about it because she does not understand enough about the food connections. Ellie is afraid to make mistakes. She never had any proper professional advice about her diet. She lost 3 stones with her diet (about 20 kg). In the last 10 month she further lost 2 stones (about 12 kg). Ellie’s restricted diet is dominating her live. She feels like in a food prison. Ellie wants that food is pleasurable for her again. That is why she came to the Food Hospital GP.

That is what the GP said:

Trimethylaminuria (TMAU) or fish-odour syndrome is a condition that will never go away. TMAU is a compound that is produced by the body. Normally the body gets rid of it very quickly by an enzyme. The trouble for Ellie is that she has not enough of that enzyme. So her body does not get rid of it. It builds up and is released in the saliva, the breathe, in secretes of your body, the vagina, the skin and the urine. And it is very very smelly. There is no cure for Ellie’s condition. Limiting or avoiding food with a high choline content makes it possible to minimalize the constant smells.

 

At the Food Hospital they are worried about the diet of Ellie. That is why Ellie has to see a dietitian.

The symptoms of the fish-odour syndrome are different very bad body smells. But the consequences of that go further: mental problems, social problems, social isolation, skin problems and diets that can cause health problems.