I have carried an ataxia diagnosis for around seven or eight years. It progresses inexorably and the only relieving factor I can find when I contemplate my situation is that it did not affect me until my late sixties.
I do however notice that when I consume foods which contain preservatives or other additives my ataxia is affected. My balance becomes much worse, I experience fatigue earlier than usual and also on those occasions I'm plagued with indigestion. The answer of course is to eat carefully but that isn't always possible. Do others experience anything similar. I'd be very interested to know. If anyone has kept a record of those additives which pose a problem please indicate which ones.
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Piero
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I definitely am intolerant to convenience foods. As a result I never eat out because it is not worth the risk.
I cook all my own food, using the best fresh produce - organic sourced from local farms if possible.
When I visit the family they are very understanding - at Christmas I took my own gravy. When we have visitors I am still not tempted to indulge because , for me, it is not worth it.
I know it is awkward but far better than feeling ill.
Dear Piero, I try to eat a lot of fresh fruit and veggies. Little to no processed food or dairy.
A bit of lean meat only (organic) and fish (never farmed). I buy organic foods whenever possible. They're more expensive, but worth it if my ataxia is better, as I've had ataxia over 20 years now (I'll turn 65 this month). My best to you..., ;o)
Hi I’m in my 60s and was diagnosed with PN 13yrs ago. The ataxia became noticeable about 5 yrs ago and is slowly getting worse. My reaction to preservatives and additives is burning nerve pain, paraesthesias, which can last up to 48hrs. So like you I try to avoid at all costs. Anything with corn derivatives like citric acid. Maize starch,cornflour,msg, and also food high in histamine like strawberries and other fruit, even some red wine. ‘Natural flavouring’ is a misnomer too ! But what frustrates me is that I haven’t spoken to one neurologist or go who understands or sympathises. The last doc I spoke to said ‘well you’ve always just eaten something!’!!
I am gluten free and a vegetarian and find I feel better altogether. I have no real reason other than Ì feel better and I don't suffer from indigestion and Ì 've heard of a Nottingham doctor who puts all his patients on a gluten free diet as soon as he sees them
Too much sugar, yeast, artificial sweeteners, and too many carbohydrates......usually cause me digestive problems, worsening balance and brain fog 😐 xB
Thanks for your response wobblybee. Have you brought up with your doctor the effects upon you of some of the foods you may be exposed to, e.g effects on balance and the maddening 'brain fog'?
I did mention that I’d previously seen a Homeopath, and had been diagnosed with Candidiasis, which can cause Neurological symptoms too. There was no comment... But, I do continue to be aware of what I recognise to be triggers.
I hate additives! I have coeliac so i'm very good at deciphering food labels. I kept having reactions despite being gluten free. I started keeping a food journal. the top culprits for me are xanthan gum and 'natural' flavours. any time those two are in something I get very sick, with increased wobbling, dizziness, fatigue, and mad itching. the upside is I eat healthier than I ever have, but it gets boring sometimes.
Thanks Blanket Time. I'm fortunate in that I don't suffer coeliac disease however my responses to the substances you mentioned, plus others seem to be very close in nature to yours. I'm 75 now, but my negative reaction to food additives seemed to start.. or at least I noticed it..... in my early forties. I wonder if in any sense this eventually developed into Ataxia? I wonder if others with Ataxia also respond unfavourably to what is a very wide spectrum of processed additions to natural food?
Yes, I get reflux from the digestive system problems I now experience, it has shown itself via loud hiccup sounds but not hiccups and now has progressed to reflux occasionally.
Easily controlled by taking a dose of 'Milk of Magnesia'.
I, like you, suspect the food and cheese is the main suspect at the moment, I have tried changing the food I eat to narrow the field to list the offending items. This morning I included a fried egg with my usual breakfast of fruit, cereal, and marmalade toast and my system has behaved itself. Too early to lay the blame on cheese but I will continue to monitor my condition and hope this thread is expanded to remind me to continue with my self diagnosis.
The body pH may need to be adjusted, time will tell, I hope!!
You're quite right to check the food, cos you are wot yu eat,
Thanks for responding Stedman. If the information is of any use to you, for the reasons you touched upon I abandoned 'cows' cheese a year or so ago. I now eat goats cheese [in moderation] and experience no problems from it.
I would love it if food affected me, but alas, I seem to have a cast iron stomach. Nothing bothers me, no allergies and I eat a lot, have fast metabolism, stay skinny. I have now passed 6 months gluten and dairy-free, less meat, more plant proteins, and no noticeable changes. Of course, an anti-inflammatory diet is always healthy, so no problem. (My cholesterol is probably really low now.) I guess I am just waiting for a "miracle".
Thanks Ninotchka, you really have managed your diet well. Does it have any appreciable or quantifiable effect on your ataxia? I'm sure your diet does have a significant effect on the condition but is it noticeable on a day to day basis and briefly in what ways? Thanks again for your response.
I can't say that I notice any difference, ever. I know that I eat well so that makes me feel good in general. I like to cook so that puts me in charge of my diet. I don't trust a lot of packaged foods. And I don't have a sweet tooth - I prefer savory. Maybe I would feel worse if I didn't eat so healthy! It probably helps my overall mood. Also, I always have a glass of wine with dinner. But if I drank too much, then I would lose my balance for sure.
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