I am a 77 year-old retired pathologist and new here. My illness began 6 years ago, with difficulty in walking, upset balance and problems getting in and out of cars. I was fairly sure I had ataxia of some sort and was eventually seen by the neurological team in Nottingham. They disagreed with the idea of ataxia but were unable to come up with any alternative diagnosis, after many, many investigations, and I was discharged without a diagnosis! An MRI showed atrophic changes in the cerebellum but there was no comment as to whether this was consistent with my age or not.
I happened to meet up with a retired colleague who had a diagnosis of gluten ataxia and was being seen at Sheffield. His symptoms struck me as remarkably similar to mine, so much so that I thought it worth trying a gluten-free diet. This I did, and the immediate effects were dramatic! Within a week I was walking better and further, balance had improved and my depression had lifted. These improvements were maintained for about 6 weeks, but then I got a fluey cold and everything went suddenly and steeply downhill. I have been on a strict gluten-free diet for 5 months and now my symptoms are worse than they have ever been.
I have been referred to the Sheffield team and am awaiting an appointment - the wait is long at the moment, at about 4 months.
Has anyone had a similar experience of a gluten-free diet having an immediate effect, but then wearing off after an infection? I can't work out what has been happening - maybe the cerebellum was enjoying a final fling before giving up!
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Malcex
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I am really sorry this has happened. I have been having problems with my balance for about 5 years it was all put down to a broken spine something I was born with and was finally found and fused April 2015. Unfortunately it didnt fix my balance or leg weakness. I had blood tests in November requested by my neurologist and I was diagnosed with coeliacs 22nd December. I removed gluten from my diet the next day a bit of a hassle shopping just before Christmas! I had already been reading about coeliac ataxia from these pages and realised the importance of removing gluten right away so as not to destroy anymore of my brain. I too have had a lifting of my life long depression. I am now 61 and I have thrown away my anti depressants and I feel like a huge cloud has been lifted from me. I always had such a low mood and its gone after a couple of weeks. The unexplained pain I had in my foot that has kept me awake me at night for 15+ years has gone. I don't know what to expect whether I will have any further recovery I certainly hope so. I know there has certainly been no research regarding recovery for someone like me who eats a whole food plant based diet, no sugar oil or salt. It has had good results in the treatment of other neurological conditions and in the treatment of cancer and reversal of heart disease. If you would like more information please look at the website of Dr John McDougall and the film Forks over knives. He is one of a huge group of Drs who are treating people who have been given terminal diagnosis from conventional medicine and who have had their patients recovered. If you would like to know even more please feel free to contact me. In the meantime I would love to know how you get on in Sheffield and whether you feel it is worth visiting the clinic. Wishing you all the very best. Jill
Hi Malcex, Now 66 and about 5 years ago started to get these wobbly symptoms that I would stay around for an hour or so. I could never get it to start or to stop. Was referred by my doctor to the QMC where over several visits to different corners of ENT and many different tests, the Irish Consultant said "As far as we're concerned you are 100% fit" At that time I would only get out of a chair by using both hands as props for my balance. At Tai Chi, while debating in a circle and in very dim light i scared myself at the end by feeling that I was going to head butt the floor by standing up. Played fairly serious squash for 30+ years but am now 30kg overweight and my damaged ankle now appears to be arthritic. Have now changed my car to a Golf Plus (High up seats) automatic with cruise control.
I find that the cold, an hour on my feet leads to a numbness developing around the thighs and the hips and walking can be extremely tiring. Am using a X-trainer in the bathroom daily but am struggling to get fitter. I know that losing the weight would help but this doesn't feel like it's down to just the weight.
BTW was referred by ENT to Neurology in the QMC and A Czech Dr Mihalova announced Ataxia within 5 mins of me being there. Her tests reassured me, and her, that her diagnosis was clear and authoratative. The MRI scan, she showed me, was OK for size but had some white spots.
So after just 2 appointments her final words to me were "I don't need to see you again…"
I'm obviously much luckier than many here on this list but I still feel a bit lonely with it. Would be happy to compare some more notes with you too. Cheers
Am going out so short reply! I was diagnosed with ataxia 5 years ago and on my MRI were white dots which the neurologist said he didn't know what they were. I saw a kinesiologist months later and she immediately said that's how coeliac disease shows up on an MRI and so I went gluten free. The results were almost immediate and I improved with speech, walking and many other things. 5 years on my eyesight is getting much worse I have to wear prism glasses for double vision over my contact lenses but I have just started reading a book about improving vision without glasses. Everything seems an uphill struggle with ataxia now and I feel quite depressed at times but permanent exercise, physio and other tasks are much better than the alternative - so keep going!
I have been diagnosed with gluten ataxia and am under the Sheffield team. I have been following the dirt for two years. Apparently, my MRI shows an improvement but my symptoms are much worse so much so that I can barely walk, am permanently dizzy, vision is very disturbed and I can barely look after myself. I live alone which exacerbates the problem.
I often wonder if following he gluten free diet is worth the hassle but Sheffield seems keen for me to continue. Will discuss against next appointment in April.
I am so sorry to hear that you are getting worse. It is so hard to tell if you have been glutened if you don't have gut symptoms. Only yesterday I was reading there is gluten in some sanitary products where else for goodness sake do we have to look? I am now checking makeup. If anyone knows of a gluten free range please say.
I am 45 and i have ataxia and my symptoms started around 30. Since i started a glutenfree diet i am much better, my health and balance is improved.
I avoid gluten and milk and carbs. Dont give up you are on the right way:))!! Add eco virgen raw coco oil two tablespoonsevery day. Sugar and carbs kill your cells so stay low.
Hi. I've not got an official diagnosis because i have been eating gluten free for to long to show up on any antibody tests. but ive been battling nuerological symptoms that i have always linked to gluten , for a couple of years now. Most recently i have just come out of a intense brain fog and ataxia lasting 5 weeks after being heavily glutened twice by accident after 4 years of being gluten free. Nothing was helping untill i became even more strict and cut out all grains and dairy following some advice on a celiac forum. I am now coming back to reality finally. I am only 39 and hopefully haven't yet done too much permanent damage.
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Appetite
Undiagnosed
Confused about definition of Ataxia
Cerebellar Atrophy and Gluten Ataxia.
