I am in a bit of a dilemma with my gluten ataxia. I stumbled upon the diagnosis when I went on a gluten free diet last July in an attempt to help my array of nasty symptoms including dizziness, nasty headaches/migraines, poor balance; and unfocused vision. After two months, my head felt much less inflammed and the headaches were not as intense. Late last fall, I also eliminated refined sugars from my diet based upon sound advice from this support group.
I hoped I was on my way to a better quality of life. Unfortunately, I continue to be hit with attacks on a daily basis. The only thing that seems to quiet the attacks is a steroid treatment that I use when I get into a multi day attack. I then feel much better for as long as 72 hours before the attacks start again. I feel as if my immune system is quite literally off the rails; attacking me and causing further damage.
Appreciate advice on medications that might help stop this nasty cycle. I very much want to handle my condition via diet but sadly it is not the silver bullet I hoped for; although it clearly helps and I will definitely stick with it.
Hey Bill, you mean Cortico or Anabolic?
Cortico are most commonly used for auto immune disease.
yes they are, that may be a red flag as far as I am concerned. My Father died from Ideopathic Pulmonary Fibrosis. What that means is... undiagnosed, incurable auto-immune disease. I mention that because I was fine, until I got Chicken Pox. My body did not respond to Varicella Zoster like almost every child. I became very ill. Damage to the cerebellum. My point being that these where both genetic identical hyper immune response cases. One resulted in death and the other is suffering. Cortico Steroids suppress the immune system just as anabolic steroids do after awhile. The balance between the two and the fact that I'm showing genetic hyper responsive white blood cells as well as my Father is no coincidence. The use of Cortico is commonly and widely used but no one has ever touched the subject of the benefits of Anabolic Steroids. There is improvement in quality of life as the muscle cell is triggered at the Mitochondrial level to respond with no choice to store nitrogen, become strong and more responsive. We are talking about quality of life so I think this is an issue that should be spoken of because I'm not a doctor and I can say that. I threw doctors out the window 15 years ago.... not the solution.... doctors dont care unless you have money.
I have not been given steriods by my GI doctor for gluten ataxia. He has given me a prescription strength pro-biotic (VSL #3). I do eat an anti-imflamatory diet. I believe it's the best medicine.
I take a pro-biotic also Julie (per my neurologist). Although I don't have Gluten Ataxia, I do try to eat "clean", lots of fruits and veggies (organic), and fresh meats like organic chicken and non-farmed seafood like salmon. I don't eat processed foods. Can't hurt, hope it helps...,ha!