I was diagnosed with coeliac disease in December 2019 and have been on a gluten free diet ever since. I originally went to the Dr as I was having real problems with dropping things, balance, brain fog, tiredness and memory as well as having trouble explaining things and finding the correct words. I was finding it really hard to walk through doorways too. My Dr referred me to neurology, ordered MRIs and did a coeliac blood screen. My positive blood test led to an endoscopy where it was officially diagnosed. As soon as I went gluten free my balance and clumsiness got better, and I wasn't as tired. I still had the brain fog but it didn't seem as bad.
Fast forward to April 2021 and my memory seemed to become worse. I've always had a really good memory but not any more! I had to buy a tablet box because I couldn't remember if I'd had a tablet even ten minutes afterwards. I would stop mid sentence as I couldn't get words out, on occasion I would choke on my own saliva. Added to this I have poor grip on my right hand and often things fall out of my hand. I went back to the GP who re-referred me to neurology but said it might end up being linked to coeliac.
I saw a neurologist this week who has reordered MRI scans but doesn't think it will show anything. He said my brain is probably just overworked!
Has anyone else experienced anything like this? I'm 44 now and have probably been coeliac without realising since my early 20s. Until going gluten free I was always bloated with an aching tummy but had been told back in my 20s that this was IBS. I follow a strict gluten free diet and cannot tolerate gluten free oats. My gastro symptoms are fine unless I'm accidentally glutened which is very rare.
Thank you for any advice or information.
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Sparkstar2
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Hi there, I have not been formally diagnosed with gluten ataxia but out of desperation went gf about 18 months ago.Within a short time realised I was on to something after having ibs for most of my adult life, am in my 60s now with ataxia, type undiagnosed. Brain fog lifted, fatigue improved, gait and falling improved. When I started gf I just wanted to stabilise and not get worse.
My symptoms have stabilised, but I still have them. Recovery from speech problems can now take half hour of resting not overnight.
Last year because doctors and neurologists were so unhelpful and sceptical I had a private blood test and dairy and rice were also a problem for me. A nutritional therapist guided me through the restrictive diet and recommended supplements and was very helpful.
But each time after the covid, flu and booster vaccines I have taken quite a step back. Recovery back to where I was with ataxia symptoms has taken weeks and months each time. It has been quite an anxious time. I have a vestibular disorder too which means my balance can be very bad.
But to answer your question, I would definitely not go back to eating gluten or dairy. The ataxia could (who knows) be so much worse. I walk unaided generally although throughout the day this can vary. Sleep for usually 9 hours every night. Do exercises every day once or twice, keep active and sit down for a rest when needed.
God this is a terrible condition and not being able to talk to empathetic health professionals makes, for me, mental health a problem too.
I have done all of this through reading research papers and following my own instincts.
Hi - read your reply with interest as my husband who was diagnosed with ataxia about 4 years ago but the type is undiagnosed. As a close family member has been recently diagnosed with coeliac disease so he started just this last Saturday being Gluten,diary,sugar and soya free just in case he has Gluten Ataxia. How long was it before you felt your symptoms improved/stablised ? Do you mind me asking if you have been tested for Gluten Ataxia at the Sheffield Ataxia center with their new blood test if so was it negative ? - my husband was referred for the test but the sample got lost so was never done - something I need to revisit ? Which private company did you arrange your blood test through - as we might go down that route as well . Thanks and apologies for so many questions
Hi reluctant shopperFirst going gf 2 days later, went to bed, couldn't sleep, and know it sounds weird but there were like fireworks going off in my brain. Didn't panic just hoped something was happening, it went on for about 2 hours.
Other ataxia very symptoms slowly improved but did not disappear. Digestive issues also slowly improved. My arms and hands have never been effected luckily. I can still thread a needle and sew.
Walking a few weeks later I realised that ataxic gait had gone and I was walking normally. But this gait still reverts back often. I think I have some cerebellar damage and think this cannot be reversed.
But stabilising ataxia is enough for me!!!
My son decided to try gf for his digestive probs. He was amazed how much better he felt.
There is no Celiac disease in our family but have found out that autoimmune conditions run in families. They do in ours.
After gf for several months I found this nutritional therapist who has advised Coealic UK, written articles for BANT, British Association of Nutritional Therapists and it was quite obvious she was very knowledgeable. She advised the cross reactive foods blood test. Apparently rice and dairy often apply to gluten sensitivity. This person has patients attending the Sheffield clinic. And advised what/how to go about getting the private blood test. This was very sensitive and would not be available through the NHS.
I am going to ask UCLH for a referral to Sheffield, they seem to specialise more in genetics and hereditary causes of Ataxia in London. So I have not been tested there but have been advised that in this area there testing is second to none.
Personally I think nothing beats the way you feel, keep a diary for future reference.
My neurologist does not believe in gluten ataxia despite having a coeliac daughter!!!!!
Sorry but I don't think HU allows names of people or companies so cannot post this. Search BANT. Private does not come cheap.
Also supplements are very important and although I understand this area a little was advised to take things I had not heard of before.
For all ataxians this is a long journey with little help from NHS health professionals so if we have the strength to be motivated then we owe it to ourselves to do as much to help ourselves as possible.
Thanks very much for your long and informative reply. Hubby is feeling positive effects already (day 3) for instance the "cement mixer" feeling in his head has stopped which makes him feel so much better in himself. We will definately persevere with being Gluten, Refined sugar,dairy,rice and soya free. Best wishes
Glad you found my over long essay useful.This is all personal experience and research I have done out of desperation with ataxia.
So not down to a professional mind. However I do know there is so little medical help and knowledge out there surrounding ataxia so thank goodness for these forums where we can at least gain some knowledge and support.
It is a bug bear of mine that cerebellar ataxia is not picked up quicker by neurologists meaning that possible ataxians, autoimmune and gluten are not treated sooner and avoid less irrevsible damage.
i am 45 penny.i woke up on the settee late pm and didn't know am,pm dark, today, next day or what.i am NO CEALIAC.my neurologist asking stopped now.my late husband passed on 2,5 years ago, had a clear conversation with him suffice to say my dream...ok you say a traumatic life changing event.one wld think 2months since his passing, not now.MEMORY WORKS BIZZARLY.I cough eating, my breatthing affected had a 2 week spell of choking, and regularly bite my own tongue 1once a month.thank god memory ok, not NATIVE, sdpeak Slovak said 5 yrs ago to mynow late hubby he cldnot speak slovak, one day when i ONLY SPEAK MY MOTHER TONGUE and start expecging answeres from you in slovak, start worrying.lost the plot.i have many allergies,right when on over the counter antihistamines BRAIN FOG DROWSINESS SETS IN.WHO DOESN'T KNOW ME THINK HALF ASLEEP not payingattention, firing on all 4 cylinders.sometimes think I must be cealiac, food just rattles gtthrough me,lost weight 48kg, now lost more -3kgs.when does it stops.i eat like a horse, the amount others wld think that woman is bigger wider than the door and I am this 45kg little door mouse.and i NEVER HAD WEIGHT PROBS.only since ataxia gradually i am not ok 6th year.
I was diagnosed with coeliac a few back back and they thought the same thing but my systems persisted and got worse. They eventually determined I have SCA (spinocerebellar ataxia) from an mri of my brain but don’t know which type.. in a research project to try and figure it out. It’s still so rare I don’t think they know so just keep pestering them otherwise they’ll try and fob you off! Good luck x
I will never knowingly eat gluten again as the damage is just not worth it! My covid vaccines and booster floored me in terms of exhaustion and it took me about three weeks to recover properly from having covid in October last year.
I am unsure of my coeliac status, as I had blood tests but the phlebotomist said it wouldn't show if I wasn't eating gluten, so I think I'm a bit stuffed.
I find gluten foods make me very nauseous, oats, barley and wheat. I'm unwilling to start eating these things again just to get a diagnosis, I can manage a small amount of Sourdough bread though. Non-gluten such as gluten free fish, no problem.
I have the other things you mention, Dropping stuff, balance, brain fog, memory and sheer exhaustion, every day. I also have swallowing problems and I can choke on saliva.
Much of it I put down to Fibromyalgia and acid reflux as I have a badly scarred oesophagus.
Some of it I am sure is due to the low mood engendered by Covid fears; Been 'Shielding' for almost 2 years!
Tiredness, stress and doing 'too much' affect my symptoms badly. Doing 'too much' can be chatting with someone for 30 mins on one day and 10 the next. Doing interesting things can make the symptoms come back as well. (Brain overworked on top of all the other extra work it has to do.) I rest every morning until I feel OK to move around. I sit down and 'recover' frequently. If I get a cold or headache I become worse. Realising this helped me, I try to make sure I have a day of doing little after going out the previous day. We have limits and have to work around them or pay for it- sometimes it is well worth the price we pay, sometimes not. If you aren't already with Sheffield, ask to be referred, their MRI picks up on fine details not shown in MRI's. They are brilliant.
In addition to your ataxia symptoms I would also look into Vitamin deficiency. Some of your issues sound like issues I had when I was low on B12.
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