In 2005, the Familial Dysautonomia NOW researchers made a huge treatment breakthrough! They discovered that those with familial dysautonomia (FD) must avoid tyramine, a natural substance found in aged foods, such as hot dogs, prunes and soy sauce. Avoiding tyramine is crucial for those with FD. When tyramine floods the system, the FD body is ill-equipped to wash it away, causing a potentially fatal attack. Our son, and many others with familial dysautonomia, has experienced these physical attacks due to inadvertent tyramine intake.
Avoiding tyramine is tricky. It does not appear on a food label. Tyramine levels change in food overnight. No commercial test strips currently exist to measure tyramine levels in food. Cooking does not remove tyramine from food. Consuming certain food is a gamble and losing is no fun! Adhering to a tyramine-free diet affects choices when dining out, grocery shopping, preparing meals and eating leftovers.
One of the most frustrating aspects of tyramine is that the same food purchased one week may contain low levels of tyramine, but higher levels the next. Also frustrating is that each person has their own “tipping point” so someone with FD might be able to handle a cautionary food, while another person with FD cannot.
With that in mind, we recommend taking a guarded approach when selecting foods. For starters, learning about a tyramine-free diet is helpful. You can find specific guidance at https://fdnow.org/wp-content/uploads/2016/09/Tyraminelistpdf0916.pdf.
Ann Slaw, JD
President, FD NOW
Parent to young adult with familial dysautonomia