Has anyone found that they have lost their appetite, and lost weight, after an Ataxia diagnosis?
Has anyone tried a gluten free diet?
I live in North London/Enfield, am 70, and wonder if their is anyone locally who has been diagnosed with Ataxia? My diagnosis, some 2 years ago, is idiopathic late onset Cerebella Ataxia, but my walking, speech and writing seem to be getting worse now, with constant tiredness more apparent. I just keep going as long as I can!
I have the same problem, I don't have any interest in food and seldom feel hungry. I have been taking acetazolamide for about 4 years and thought this might be the problem as most food has lost its flavour.
🙂 Personally I’ve found my weight has gone the other way, but I’ve read posts from others who say they’ve actually lost weight. It’s hard to say whether this has any bearing on the type of ataxia involved, or whether it’s just due to that particular individual’s metabolism. If you are concerned about severe or rapid weight loss it’s always a good idea to seek advice from your GP.
Generally speaking it's the people who are actually diagnosed with Gluten Ataxia who benefit most from a gluten-free diet. Although some people are simply gluten sensitive, which is not the same thing, but they would also benefit from a gluten free diet. If in doubt speak to your GP, or Neurologist, there is a specific test for Gluten Ataxia, details are in the summer edition of the AtaxiaUK magazine. Or if you could just simply ask your GP to be tested for gluten sensitivity.
🙂 Overwhelming fatigue can be a big issue no matter what age someone is. I can go all day without wanting to rest, and then find when I sit down in the early evening, before I realise what’s happening I’ve actually been asleep for a couple of hours, it’s like switching a light off 😯 Off course everybody’s different, but it is better to pace yourself and have regular periods of rest 🙂 Most people find it doesn’t take much mental or physical activity to exhaust them, this is par for the course and the trick is trying to find a happy medium 🙂 xB
I completely agree with you, re gluten free diet, sensitive, ONLY, NO ALLERGY, INTOLERANCE...re fatigue, the bulb switched off is a good description,IF EYELIDS DROOPING, NOTHING STOPS ME GOING TO BED... I'd add short bursts of clear thinking ALMOST SCARY CLARITY....to follow by exhaustion and need to sleep...Night sleep iS particular VERY IMPORTANT, as NOT FUNCTIONING WELL otherwise...pacing differently and resting as much as possible, exercising, good food regime...and GOOD SLEEPING REGIME (AT NIGHT) TRY not to sleep during the day IF IT INTERFERES WITH YOUR NIGHT SLEEP...mY FATHER HAD ATAXIA SCA2, that's where it came from, his ma had it first I know of, possibly her own father...never met him...Nobody ever wore glasses in my family, only me aged 10, and progressively getting worse, shortsighted...my eye nerve -reflex-slowed down, but hey it is all in the head, and I don't consider myself disabled, however when forget, IT SOON REMINDS ME...but there is worse, cancers....coming back...this is it...with adequate provisions on all fronts, LIFE IS LIVABLE... JUST STAY POSITIVE!
Hello, I've had CA a long time except to begin with didn't know I had it, but yes in the last year I lost a stone for no reason. Food doesn't really appeal to me probably because I don't go for a good walk every day. I'm sure that would make a difference. I definitely wouldn't go out to eat because my lower face is slightly distorted and I can't keep food in my mouth (very embarrassing). Hope you find an answer, Jean
I think I have lost weight because I'm eating less. I often feel anxious which also affects appetite. However, my consultant feels I should get it checked out and is not Ataxia related! That has made me more anxious! I dont often feel hungry, and my palette prefers sweet things now. And smaller portions. I often don't eat breakfast until lunchtime, and miss meals altogether!
I am sca2, in December for solid 2 weeks choking....every food I swallowed...A bit concerned, my neurologist requested in Feb. a referral to a speech therapist/not only for speech, which is slurred, but for my choking. if THERE IS SOME SORT of exercise...Now June 2019 and developed breathing, panting after minimum exhortation, psychological had 2 panic attacks.mainly psychological element...Have INACTIVE asthma, no inhaler...left a message for my gp...will attend, take a taxi...
Hello from North Carolina! I barely have any appetite and the foods I crave are strange....I have acquired CA, have had it for 9 years but was only diagnosed 3 years ago. I think that’s very common with this disease...the neuro who finally diagnosed me had never had a case of CA in over 30 yrs of practice! Anyhow, back to the subject at hand! I’m a bit repulsed by food and as mentioned prior, I have a very limited diet. I’m also tired all the time...I actually started to fall asleep at an Eagles concert a year ago. Needless to say, that was the night “the music died” for me. No more concerts for me!
I wonder, do any of you kinda hate to leave home?? I really do not like to go out because my brain gets easily overwhelmed and I get all panicky. I also had to give up driving for the same reason...my life seems to be getting smaller and smaller every day 
Yes, my confidence has definitely taken a knock and I don't go out alone much, though force myself to walk round the block most days by convincing myself it is my exercise! My real difficulties are in crossing roads ie turning my head, and fear of falling, and not being able to get up, in a public place.
Hi Peakerholme I have CA which I have had for about 3 years and I am just the same as you. My appetite had gone as food doesnt taste the same. I havent lost much weight as I nibble a lot . I try to walk every day and I am having Nero Physio which does seem to help but does nothing for the fear I have of falling ( I fell last year and broke my wrist ) and I feel tired most of the time . You are not alone .
Dear Peakerhome, I've had ataxia 20+ years and am 65 years young now. I find I have a pretty good appetite, although don't always fix myself something, as I have a hard time doing it. I tend to eat yogurt or fresh fruit/berries and fresh veggies, anything I can grab. In terms of leaving my home (I can still walk in my home extremely carefully, I use a cane (stick) or a two handed rollator, as I'm always afraid I'll fall, as my balance/gait is awful. Do you use any aides? Over the years my ataxia has progressed and will continue to do so. Fatigue is a huge problem, no matter how much rest I try to get. I haven't lost any weight due to my ataxia. I suggest you see your GP! My best to you..., ;o)
No aids for walking yet (pride before a fall?) but I’ve got a shower handle and seat, a bed handle and my settee raised. A walking stick seems very wobbly to me (though good to tell others) - I find an arm or a firm handrail better.
DIAGNOSED WI CA 6YRS AGO, STARTED LOSING WGT RIGHT AWAY. BLOOD PANEL LOOKED GOOD & DID NOT RAISE CONCERNS 4 CANCER. WALK 3/4 MILE 5 DAYS A WK. EATING ORGANIC FRUITS/VEGGIES AND FOLLOWING SUNVOX POSTS ON THIS SITE RE. SUPPLEMENTS.
CLICK ON SUNVOX 4 EXCELLENT SUGGESTIONS. AM READING DR. WM. LI, EAT TO BEAT DISEASE. STILL TRYING TO GAIN WGT, BUT MY FATIGUE & PERIPHERAL NEUROPATHY HAS GREATLY DIMINISHED. ALL THE BEST TO YOU.
Dear Peakerhome, In terms of using a cane/stick, I started using one about eight years ago, as I took a bad fall while out and about, severely injuring my back! I had micro-tears and it took a long time to heal. You're right, as now a cane/stick is a bit wobbly (initially it wasn't), except when I'm with my husband and can hold his hand also. I really do prefer to use my rollator, as I can hold onto it with both hands (much more stable!), especially when I go somewhere alone (I love shopping carts in stores)! I've taken several serious falls in my home when NOT using my cane (stick) or rollator. I've fractured ribs, my pelvis, split the back of my head open, requiring nine stables to close the wound, had orthoscopic surgery to repair a torn menicus in my knee and suffered many large bruses & contusions! Do you think I should use my cane/stick or rollator in my home all the time...,DUH...,ha! Anyway, my philosophy has become 'better safe then sorry'! I also find when out and about I'm not only safer, but people who are walking by me tend to watch out for me, which I greatly appreciate! Also, people I don't even know will hold doors open for me, which is so very kind! Until I fell, there was NO WAY I was going to use a cane/stick or rollator! My tune sure did change with that fall!!! Again, my best to you..., ;o)
Hi Peakerhome, had a bit of stressful time, lost weight...BUT NOT DIRECTLY LINKED...had a bit of choking issue, must pay attention while eating on breathing correctly no dry bread and speaking...one or the other..., a bit short of breath....being referred to a speech therapist/more for choking, but speech slurred....I have NO GLUTEN ALLERGY,but used to eat gluten free bread, as normal bread influenced by flatulence...My ma must have at least intolerance, for bread, any cakes, bread and PUT WEIGHT ON JUST LOOKING AT THEM.
good on you! remember, that's all we can do, our best. Going for a test, if can eat gluten or not.FELT VERY GOOD ON SELF-IMPOSED gluten free, but that can get costly, paying for bread, pasta...no whim this...
Blood tests negative - now what?
Cerebellar Cognitive Affective Syndrome
30 years of slow degeneration
