Has anyone made any diet changes that have helped/hurt their ataxia? I know that some people have gluten ataxia, but I'm wondering if cutting out gluten has been helpful for anyone with a genetic spinocerebellar ataxia?
I have. I started eating paleo in February this year. I know people think it is a fad but OMG I never expected a change with my ataxia but I certainly got one. My interictal symptoms almost completely disappeared and my episodes reduced as well as having more energy so I was far less tired which is why I tried it in the first place. I fell off the wagon (foodwise) and my ataxia got worse - I am now eating primal - paleo with dairy products (I can't live without cheese) and it is the best decision ever :) My husband has also noticed a change in my ataxia symptoms
I have SCA3 - hereditary. I came across the Auto Immune Protocol diet which is similar to the Wah'ls diet. It looked really, really restrictive so I didn't start it right away. But my energy levels were sinking fast - I'm only working 4 days a week but by Friday, I just layed down on the couch and never got up to make dinner or anything else! I woke up tired every day and turned down any offer to leave the house because I was so tired.
So, last Wednesday I made the commitment to try this diet, also known as AIP diet. The goal is to reduce all potential inflammatory foods until you reach a baseline and stay there for a while. (I've read different lengths - 1-3 months or even 6 months to 2 years) Then you can start adding things back slowly to see what you can tolerate.
I've never had any food allergies and could pretty much eat anything, so I honestly wasn't expecting much. So I started Wednesday and it was OK. Same on Thursday. On Friday, I noticed that I was able to walk down the stairs from my bedroom MUCH easier - not like I used to, but not like I've been doing recently, either.
But the MOST impressive change has been in my energy level - if I was a cell phone, I'd say my battery level was at 2 or 3%. By Friday, I felt like it was 95%! I met my husband out for dinner Friday night (and stayed on the diet) and stayed up to watch a movie on Saturday. I can't tell you the last time I've stayed awake to watch the end of ANY movie!
I don't know if this plan is feasible for a long time, or if my doctors would approve, but I'm stickin' with it!
Yes! I have SCA6 and been on glutin free for about two years. I, and my family can tell a difference in my gait and balance. I lost some weight and have more energy. If I eat glutin by mistake I can usually till it the next day or so, not a big differance, but some, and every little bit helps…
I was tested for gluten sensitivity and there was none. I cut out gluten, sugar, yeast and all grains. A miraculous improvement. If I have gluten, I will suffer sometimes for a week.
I went Gluten and the weight I gained just fell off, been on this now over a year, I cheat and use cream in my coffee but
both my husband and I look 10 years younger with the weight off I would recommend it Sweet Potatoes are better then White ones............................. Go for it!
Went gluten free for 6 months and there has been no difference to my CA but it has done wonders for some
Hi - Definitely check out this group: http://www.livingwithataxia.org/group/foods-recipes.
Jeannie shares how gluten-free has really improved her situation.
I have some unknown type of spinocerebellar ataxia. I went gluten free and pretty much right away I was less shaky. I could read my handwritting. My doctor also commented on how much my writing has inproved.
Hi runner. 40% of people have an intolerance to gluten to some degree. In fact the flour we have today our bodies aren't set up to digest well. I have sporadic SCA. Which means they don't know how I got this ataxia. One thing that I know is that not having any gluten in one's diet CAN help people absorb more vit and minerals regardless if there is tummy issues or not. In fact I never had any problems from it I thought. But am still doing so much better than I could be as told by my Dr. any compared to others that have ataxia that I know personally. But it may take a while to see any results no matter how small they are. Figure we have had Gluten for so many years it may take quite a few months. I've been off since 2007 and seem to have platitude according to my MRI's by my Dr.and I strongly belive it's from not having Gluten and not having anything processed in a bag or box. More natural food. I had a blood test that showed I was on the normal end but my Dr. suggested I go off anyway to see how I felt being off. At first there wasn't a huge difference but as time goes on I seem to loose more and more symptoms and gain more and more life when I look back. My husband notices it and has mentioned it that he has noticed a difference since I started.. I'll never go back. To me what I'm giving up has great results so I'd never want to take that chance in messing that up. I figure it's a small price to pay just for a moment of pleasure etc. .I don't think It's not hard to do either. But I don't try to substitue item for item even though they have come a really long way in taste and consistance, don't exspect like for like It's diffrent but good diffrent. Try it you don't have anything to loose right? We maybe a few symptoms is all! :-)