Diet - what works and any idea why?

I’ve had Ataxia since the year 2000. My best doctors are convinced I have SCA although genetic tests don’t confirm a gene as of my last tests in 2007. My life has been very very stressful as I’ve been trying to save my son, a Heroin addict and his wife (also a heroin addict) for the last 5 years. More recently I’ve given up on trying to save them and focused more on saving my vulnerable grandchildren now 4 and 8. Their parents are doing better, semi sober and better able to function thanks to a drug called Suboxone. The kids too are doing better and I’ve learned to escape to Hawaii for a month or two at least once a year. Despite all of this I am improving. I’ve tried many things over the years and am still trying to figure out what has helped most. Without a doubt diet is a big factor. For an entire year I went on a diet free of gluten, dairy (except eggs) and soy. After 3 months I saw improvement but refused to believe it. After 6 months I wrote my doctors that I thought I had found a cure! My balance was so much better that I could do a semi- kind of “run” and had visions of skiing again. My nstagmus was not better, but vertigo was improved most of the day. At the end of the year my improvement leveled off and I went off the diet. Now I eat gluten, dairy, and soy and still have much of the improvement gain from this year off of processed foods. That year required that I eat very “clean” no processed foods. Mostly whole foods and lots of fruits and vegetables. There weren’t the gluten free foods off the shelf there are today. Yesterday I spent the morning standing on a step ladder with hands overhead putting up window shades holding a drill. Perfectly stable. In 2012 when I went to Hawaii I took walking poles and needed to use them to get around. I no longer need them. Unfortunately since the gluten free diet ended I’ve gained a ton of weight and have to get back to a better weight. I have discovered that a high protein diet really helps me lose weight and really minimizes my ataxia symptoms. Carbs,sugar, bread, & processed foods definitely affect my symptoms (and weight), negatively. I’ve known since the diet that I’m particularly sensitive to milk, not just the lactose in the milk but the protein too. Still I love milk, but can only eat cream, yogurt, cottage cheese.

Here is an article I read about Parkinson’s Disease that implicates milk in some people which is making me inspired to give it up again.
Since I have a head tremor as well it makes me wonder about dopamine. And if milk can trigger an autoimmune response that can attack the brain as this article discusses why wouldn’t this be able to attack the cerebellum instead of the dopamine center as is the case in Parkinson’s? This article advocates high starch diet which I’m pretty sure is the wrong thing for me but I am wondering how I’d do on a less meat more vegan diet with plenty of good vegetable protein. BTW the year of gluten,dairy,soy free diet completely eliminated years of IBS that I thought was a part of my Ataxia. All tests prior to my diet showed I had no nutrient/vitamin deficiencies but I now believe that probably wasn’t the case after seeing so much improvement. Prior to the diet I was unable to take any vitamin supplements as they immediately went right through. I am now taking daily a multi vitamin, 5 fish oil pills (Carlson’s), co-q10, B complex, DHEA, Melatonin, —and 10,000 vitamin D twice a week (prescribed).

Very interesting. I agreed diets do seem to come and go in phases but keeping weight off is the most important for me. Cutting out sugar is my main aim and CHALLENGE !

There is no pattern to my symptoms that I can recognise .. how much CoQ10 do you take? I have had conflicting advice on it from neurologists I have seen. [UK]

Sorry to read of the young ones and their addiction but envy you the trips to Hawaii ;) enjoy grandchildren, I love mine. x`

I’m takin mg 100mg daily. This was part of the successful UCLA Alzheimers study using a multi systems approach. Why did your docs say maybe not?

Nothing seems to make my CA any better. Father hadPD from age of 50 but his PD seemed to respond to Sinemet although his movement was jerky.My ataxia seems worse and I was younger.Thanks for the very intersting article.

Keep up trying with the kids it is possible to get straight after heroin but it is not easy. I am on a cannabis site in Canada and some of them used pot to help get off of hard drugs. I had a cousin die on hard drugs so it is worth the fight. On the diet thing I tried Dr Ornish diet years ago and did great, so great my boss took me aside and asked if I was having health problems. A lot of people don't like this diet because they get bound up but I never had the problem.