Dairy elimination is the only thing that got me off antipsychotics and allowed me to stay in a mainstream school. If I eat dairy, I have tic attacks so severe that I need to be restrained. However, not everyone with tics reacts in this way to dairy as different people have different triggers.
Scientific research has shown that a lot of people with Tourette’s do better on a gluten free diet (Rodrigo et al, 2018.) However, being gluten free for a year only caused me to get worse. My muscle weakness was more severe, I struggled to sleep more, and I had severe emotional dysregulation that lead to self-injurious behaviours.
I need to eat a high level of carbs including gluten to relieve my migraines, reduce my muscle weakness so I don’t need a wheelchair as much, and to give my body the energy to have emotional regulation. This may be due to an undiagnosed metabolic issue or cellular energy deficit (that explanation would make the most sense as I have multiple symptoms of poor mitochondrial function, high lactic acid, and post-exertional malaise.). Therefore, despite the fact that a lot of people with TS do better without gluten, I don’t fit into this category due to other underlying issues.
Some people say that no one with Tourette’s should eat sugar as this can be a huge tic trigger for some people. However, it doesn’t worsen tics for me. I do however need to reduce my sugar consumption as I have a gastrointestinal candida overgrowth and sugar makes that worse. I also have episodes of mild low blood sugar though according to my blood sugar monitor so sometimes I need sugar to get me out of those episodes and allow me to function.
Food dyes impact me TERRIBLY, they trigger horrific rages 6 hours after consumption. If I don’t eat the dyes, my rages are a LOT less frequent. This is common for people with PANS and also Tourette’s and ADHD. However, some people react to dyes in different ways, and find that they worsen hyperactivity or tics rather than rages.
I was vegan for 2 years - and it made me sicker. I was eating a “proper vegan diet” and was having enough B12 and other vitamins, but my body just couldn’t cope on a vegan diet. Others with Lyme have said the same thing. I need the high level of protein and amino acids from meat in order to not be bed bound during bad flares and not have to strain my muscles just to sit up.
I wouldn’t be able to function if I didn’t have my dairy free, dye free, high carb, high meat diet. I also have to eat a lot of salt as per the advice of my cardiologist because it is the best way for me to increase my blood volume as someone with POTS. This diet might not work well for other people despite the fact it is vital for me, as we all have different food sensitivities and metabolic needs even with the same diagnoses
Diets for neurological conditions and chronic illnesses are never one size fits all as people have different food sensitivities, histamine issues, metabolic issues, etc. There are some foods which are common triggers but they still might not affect everyone in the same way. There is no one size fits all.
Encourage people to discover their own unique food sensitivities and metabolic needs rather than assuming everyone needs the same specific diet.
