Ataxia Response To gluten-free Diet?

[gatita]

My brother who was just diagnosed with ataxia (cause still unknown) wanted me to ask this so he can have a sense of what he might expect if his ataxia is indeed caused by gluten.

Of course he knows everyone is different, but he still would like to get a general sense of how long it took for any of you ataxia sufferers to respond to the gluten-free diet?

Also what symptoms improved first?

His main symptoms are the drunken-like walk and really screwy near vision (distance is fine).

Thanks! This forum is the greatest.

[frieze]

My brother who was just diagnosed with ataxia (cause still unknown) wanted me to ask this so he can have a sense of what he might expect if his ataxia is indeed caused by gluten.

Of course he knows everyone is different, but he still would like to get a general sense of how long it took for any of you ataxia sufferers to respond to the gluten-free diet?

Also what symptoms improved first?

His main symptoms are the drunken-like walk and really screwy near vision (distance is fine).

Thanks! This forum is the greatest.

from what i have read, the neuro issues take the longest to recover, and may not be absolutely complete. found my balance issues were from lack of CoQ10. Your brother's onset being so quick would make either less likely than something viral. But I am thinking that either of the first two, maybe in the mix.

[GFinDC]

I have read posts here that said the neural type issues generally are slower to heal. From 6 months to 18 months. B vitamins are supposed to help nerves. People also say healthy fats are good for the brain. Like avocadoe, coconut, or olive oil.

[Kamma]

Gatita,

I was diagnosed with gluten ataxia in January 2012. I immediately stopped ingesting gluten and within weeks I felt my fatigue lessening. My balance issues and drunken walking still continued however. It was only by going super clean and only eating fresh foods (absolutely no processed foods including 'gluten free' replacements foods as most of these still contain gluten under 20 ppm) and eating very little gluten free grains (because of the cross contamination issues) that most of my issues have resolved. The balance issues started to clear up about six months later and my last seizure was at about the six month mark as well. My neuropathy was the last to go and probably took about nine months. I still have a vertigo / balance issue response if I accidently ingest gluten.

[gatita]

Thank you so much for the helpful replies. I'll pass the info on to him. My bro has his MRI scheduled for this morning, so we'll see what they say. He's also requesting the celiac blood panel.

[Takala]

I responded within a few days of a gradual lessening of the dizziness, but I had complications with my c spine being messed up. Took longer for the vision problems to partially resolve, as my eyes will still cross when I get glutened. But I slowly regained my night vision, so I can see to drive at night (being able to see things at night continues to fascinate me) and I can see almost the same colors out of each eye, instead of it being much duller on the one side, and I can distinguish shades of red, green, and brown better with both eyes. I told so many docs about the vision things, and no one had any explanation for it. I can see a little bit better in shadowy, or bright outside sunny glare situations, with sunglasses, but not without them, but that is going to be an ongoing feature.

The numbness in my hands and feet took longer, got my upper arms back, they were always "buzzing," finally got my feet all the way back a few years ago.

After all this, I was glad I didn't find the negative research write ups on the internet regarding recovery right away, because who needs the pessimism, even if it did take me a long time.

[clevercate]

Gatita,

I was diagnosed with gluten ataxia in January 2012. I immediately stopped ingesting gluten and within weeks I felt my fatigue lessening. My balance issues and drunken walking still continued however. It was only by going super clean and only eating fresh foods (absolutely no processed foods including 'gluten free' replacements foods as most of these still contain gluten under 20 ppm) and eating very little gluten free grains (because of the cross contamination issues) that most of my issues have resolved. The balance issues started to clear up about six months later and my last seizure was at about the six month mark as well. My neuropathy was the last to go and probably took about nine months. I still have a vertigo / balance issue response if I accidently ingest gluten.

 

Kamma & Co.

 

I'm so interested in reading ALL of these comments. I'm new to this forum, a brief bit of history.  Although I was diagnosed with sporadic ( idiopathic ) spinocerebellar ataxia in 2004, I've always felt there was more to my conbdition than just the " sorry, there's  nothing we can do for you. Go home and don't worry about it " ( an actual quote from my physician!). I brought up the idea of gluten ataxia back in '04  ( it was a fairly new idea then ) and my diagnosing specialist knew about it and did the standard tests for gluten intolerance ( they were negative ). I was retested a few years later-negative again. My M.R.I. at diagnosis showed a white brain lesion as well as cerebellar atrophy and a "diminutive brain stem". I've also had  widespread muscle ache 15 years +), stiff ankles, vertigo, unexplained double vision, tingling hands and feet (n 15 years + ), speech & swallowing difficulties "black" moods, balance & co-ordination problems....the list goes on. A long story of how I arrived at the decision of trying to go entirely gluten free-but I did 3 1/2 weeks ago and the improvements happening are amazing. I have good and bad days and especially have trouble dealing with accidental cross cobntamination and trace gluten but I am THRILLED to think there is something I can do to help myself and , hopefully, start to heal. ANY improvement is an amazing concept to me. Any feedback on this, my journey ahead, and suggestions are appreciated!

[Kamma]

clevercate, that it is absolutely wonderful that you are responding!  Especially after so long of just 'suffering through things and being told not not worry about it.  Arrrrgh, doctors make me so mad sometimes. 

 

I'm not surprized you would test negative on the blood test.  Hadjivassilliou's research shows less then 30% of gluten ataxia patients will show positive on the ttg2 iga blood test.  The cerebellar shrinkage is a hall mark of gluten ataxia.  I'm surprized that the specialist didn't even suggest trying to go gluten free for awhile.

 

But that was then and this is now and you are responding!  I'm very happy for you.  You must be ecstatic, excited and feeling much joy. 

 

In regards to the gluten free diet, there is evidence that gluten ataxia patients need to be extremely clean with their diet including not eating  processed gluten free products and being careful of 'non gluten grains' as they  might still be contaminated.  Absolutely no gluten in other words.  It sounds like you've already done your homework on that. 

 

For myself I've stayed away from all grains except brown rice every few weeks and have stuck with whole foods:  vegetables, meat, some legumes and some fruit.  I really, really wanted to be able to eat other grains and made my own baked products but started reacting to the trace amounts of gluten in them.  The whole food diet minus the grains and processed food is the only one I can thrive on.  It took a whole year for things to slowly resolve and occasionally I mess up and eat something that I thought was okay and then my symptoms of vertigo and falling over happen.

 

I'd suggest making a diary of symptom checking - rating what you feel and when.  Over time you'll be able to notice some things don't bother you any more.  It happens slowly and by increments.  Sometimes you go backwards two steps and you think you're always going to be like this but then you gradually move forward in the healing again. 

 

Are you still fairly mobile or do you have to use a walker/cane/wheelchair? 

 

Edit:

 

clevercate, if you are interested in digging into the research on gluten ataxia (and in case you haven't done so yet) the Gluten File has much of Marios Hadjivassilliou's research on gluten ataxia.  The link is here:  https://sites.google.com/site/jccglutenfree/

[clevercate]

clevercate, that it is absolutely wonderful that you are responding!  Especially after so long of just 'suffering through things and being told not not worry about it.  Arrrrgh, doctors make me so mad sometimes. 

 

I'm not surprized you would test negative on the blood test.  Hadjivassilliou's research shows less then 30% of gluten ataxia patients will show positive on the ttg2 iga blood test.  The cerebellar shrinkage is a hall mark of gluten ataxia.  I'm surprized that the specialist didn't even suggest trying to go gluten free for awhile.

 

But that was then and this is now and you are responding!  I'm very happy for you.  You must be ecstatic, excited and feeling much joy. 

 

In regards to the gluten free diet, there is evidence that gluten ataxia patients need to be extremely clean with their diet including not eating  processed gluten free products and being careful of 'non gluten grains' as they  might still be contaminated.  Absolutely no gluten in other words.  It sounds like you've already done your homework on that. 

 

For myself I've stayed away from all grains except brown rice every few weeks and have stuck with whole foods:  vegetables, meat, some legumes and some fruit.  I really, really wanted to be able to eat other grains and made my own baked products but started reacting to the trace amounts of gluten in them.  The whole food diet minus the grains and processed food is the only one I can thrive on.  It took a whole year for things to slowly resolve and occasionally I mess up and eat something that I thought was okay and then my symptoms of vertigo and falling over happen.

 

I'd suggest making a diary of symptom checking - rating what you feel and when.  Over time you'll be able to notice some things don't bother you any more.  It happens slowly and by increments.  Sometimes you go backwards two steps and you think you're always going to be like this but then you gradually move forward in the healing again. 

 

Are you still fairly mobile or do you have to use a walker/cane/wheelchair? 

 

Edit:

 

clevercate, if you are interested in digging into the research on gluten ataxia (and in case you haven't done so yet) the Gluten File has much of Marios Hadjivassilliou's research on gluten ataxia.  The link is here:  https://sites.google.com/site/jccglutenfree/

Hi Kamma,

 

So pleased to hear back from you  (and a  big thanks for the Edit. link , so useful and I hadn't found that site yet...).

I am still fairly mobile ( use public transit, walk almost every day...) and intend to stay that way. I believe one of the reasons I may have stayed mobile is that I "use" it  each day , including physio exercises for strength and  balance . I too was surprised that my diagnosing specialist ( a top researcher at U.B.C., whose name I won't mention... ) didn't pursue this BUT then she even forgot to notify me of my M.R.I. results- I had to get my G.P. to phone her office 1 YEAR LATER! I was going nuts! Anyway , as you say "that was then, this is now". Yes,  despite what should have happened, it didn't and I am THRILLED at finally seeming to find an answer...even if others "dropped the ball". In fact, I immediately switched to another neurologist and he didn't pick up on anything either. Of course, I was diagnosed in 2004 and knowledge of gluten ataxia was still in it's infancy (  although I discovered info and took it to my specialist, who seemed to know all about it...)

 

Interestingly enough, I have been keeping a journal because it's easy to lose track of how I'm doing/feeling on any given day. This is where  I'm at right now, and I'm curious so maybe you have some ideas. AND I know everyone is different  but there seems to be so few of us out there ( at least, online and sharing!). In my second  gluten free week I had tremendous improvements , even though I probably had a lot of trace and C.C. happening). I could almost run....no kidding. Just before this happened though I had extreme aching and leg pain in my upper right thigh, the very leg that always been the most troublesome. After it went away *( 36 hours) it stopped hurting and straightened out, my balance improved, I became very steady/stable, and , best of all, my mood lifted. I no longer felt "darkness" all day but  had optimism and motivation. Also less fatigue, better fine motor and I wasn't constantly clearing my throat. Now , I'm not doing as well, gait-wise, and I've noticed that my mood and speech improve in "waves", this doesn't seem to be related to what I'm eating or drinking either-like you, I am learning that "whole"  foods are a must and even "gluten free" can be deadly. Do you think it's, "normal" especially early on, to be experiencing these ups & downs"? I Keep in mind that I'm doing much better than I was a few weeks  ago, many of the improvements I've retained even when my gait isn't great and I know it can take A LONG TIME for such long-term neurological damage to respond to treatment and improve . I am pleased to be seeing any improvements-it's all a bonus to me! At Rehab, back in 2004, they laughed at my not being able to use a cane properly. I've encountered this from almost every medical professional I've visited over the years-this might explained why I decided to "drop off the radar" as far as doctors were concerned  .... Thanks again for your good wishes and feedback  =)

 

P.S. After re-rereading your comments you say that healing is not a straight line so I guess my fluctuations are  part of a slow recovery ( even partial ) and not unusuall at all. C.

[Kamma]

It takes a while for the antibodies to leave your system.  For example, AGA antibodies have a half life of 120 days.  So even if you stopped all gluten now, the antibodies would still be circulating your system full on for almost half a year.  Hadjivissilliou seen the most improvements after one year.  That's of course if you can keep the trace gluten out of your system.  That probably explains the intermittent improvements.

 

I totally agree with you about still using it and exercising.  Absolutely essential and good on you for keep going with the exercise and walking.  I have done yoga for thirty years and in the middle of my journey I could no longer stand without swaying and wobbling back and forth.  I still tried to hold the poses but would fall over.  I tried to 'remember' what it felt like, each pose, how my feet would support me and so on and that helped a bit.  I walked like a drunk but made myself keep walking.  The alternative was giving in and not trying and that felt totally anathemic and horrible.  A living death!

 

I felt pretty good in my second week as well and then took a diver for about two weeks and the wobblies returned.  The fatigue lifted and the horrible blackness that you mentioned had disappeared.  I can always link the set backs to something that I ate.  Sometimes you get really strong and think "I can have that!" That being a seemingly gluten free food but you find out it wasn't.  In my first understanding of trace gluten, I made a lazy cabbage roll dish for my folk with ketchup.  That was the only non-whole food food ingredient in it.  When I phoned the manfacturer and gave the bar code, the public relations person checked and said it had been made on gluten containing production lines.  A light bulb went off in my head and I realized I would have to be way more careful.  I can't do vinegar either even though it's supposed to be gluten free.

 

I don't know if a full recovery can be made.  Occasionally I still stagger, lose my balance and my upper torso leans way over.  Those occasional times are acceptable compared to what it once was.  There is damage that is permanent and it's learning how to work with that. 

 

I understand about 'falling off the radar' when it comes to the medical professionals.  Throughout my whole journey I began to think the medical field was only beneficial in helping people who had broken bones and could go to the hospital and get fixed up.  I did have a good neurologist who was very open.  He kep sending me to all these other experts in the process of elimination and they would take a few of my symptoms and presenting issues and ignore the others that didn't fit their diagnosis.  My head was so confused and I felt utterly unhappy cause nothing seemed to fit right.  I would also have idiopathic seizures and those were the worst especially when they happened in a public place.  I didn't go out for the longest time because I was afraid of having another one in public. 

 

Finally, I got sick of the whole lot of them (medical professionals) and sat down and reviewed my family history.  Celiac runs in my family and I stumbled upon gluten ataxia.  I took it to my neurologist and he said, "Yes!"  Then looked at me and said, "My sister has neuropathy that was linked to gluten.  You'd think that as a neurologist I would have figured you out sooner"  Then he was full on board with learning about gluten ataxia and asked me to send him all the research I could come across.  It is so very new and as he said, 'still totally on the fringes of most medical people's awareness'.

 

Keep the faith clevercate, it will slowly get better. Push yourself where you can and rest where you can't.  Unlike me, you have been struggling with this for almost ten years and it's going to take time.  I think when you start to get better, you get really impatient and want to see improvement pronto.  At least it was like that for me.  Any setback would make me depressed until I began to see improvement again.  I'd have to remind myself, well, you couldn't do this or that six months ago.

 

You sound like a very strong woman that has really pushed herself over the last ten years.  Kudos to you for still striving and not giving up.  )

 

Kamma

[YoloGx]

Its good to see your stories CleverKate and Kamma. I am so glad you both are doing so much better being off the gluten. It is such an amazing thing to learn, eh??

 

I too have struggled with gluten ataxia  for years, though it may not have been as obvious to others given the fact I had figured out I was "allergic" to gluten by the time I was thirty (I am now 63). Little did I realize the continuing, progressive damage due to still being on trace amounts of gluten however many years afterwards. It was not until the Fall of 2008 after I joined celiac.com that I began to realize how minute amounts of gluten severely affected me. Of course no one believed me, but my body was living proof. Even now I am often told that no one knows anyone as sensitive as I am to trace amounts. But this gluten ataxia explains that, does it not? Plus I also react in my lungs and kidneys, as well as my intestines.

 

For myself I have had improvements in my ability to remember nouns (not perfect but definitely better), less weakness and falling at night, improvements (but not perfect yet) of coordination in the morning, less tingling in my face and limbs, improved memory, improved gait and balance, overall improved coordination etc.

 

In the meantime I have discovered that besides likely out and out celiac since I was an infant (a fact hidden from me by my parents unfortunately since they thought I had "grown out of it"!!), I also have pretty severe salicylate, amine, tannin, and oxalate sensitivity too.  As you might imagine this has greatly reduced the range of my diet!

 

However recently I just started seeing a new doctor who combines naturopathy, homeopathy and acupuncture. I can't use his 
TCM or most of the Naturopathic herbs, but definitely am helped by his knowledge and openness, as well as willingness to learn and do relevant testing.  

 

He also finally said yes I do have gluten ataxia, especially after he saw me practically vibrate off the table flailing away 15 minutes later after he came back into the room while a lay there with  a bunch of acupuncture pins in me, worried I might hurt something. He said my myoclonus attack was a type of epilepsy, something I was not aware of. No other doctor either cared or was aware enough to figure this out.

 

Previously it was always a mystery--something however I have had to deal with almost every day and especially every night when I try to go to sleep and find my body jerking away or am doing my stretching and yoga. Fortunately diet (read making everything from scratch) and epsom salt baths and of course daily walks and the yoga helps immensely. But now these acupuncture points seem intriguing. So as a resultI am also learning how to apply self administered acupressure, for now via reflexology and some Donna Eden compact discs I have. And yes it is helping a lot!!

 

Over the last two years I also discovered that the use of a few select herbs still work for me. Initially in the fall of 2010 Ii went off all herbs despite using and studying herbs for self use and for my friends off and on for 40 years. The thing is is that most herbs are very high in salicylates and/or oxalates. In the past in my ignorance, I was both helping and hindering myself with them given my salicylate sensitivity (and yes I had always been sensitive to aspirin and even remember thinking apples gave me bruises when I was 3--and threw up the first time I had chamomile tea)!

 

Interestingly these detox herbs that I still use (or should I say, that I now use again?) are considered by some to be antidotes to salicylate sensitivity, although I seem to have been gradually able to handle a few more herbs than most with these various food sensitivities. 

 

I realize this topic is about gluten ataxia, but IMHO I am not likely the only one here who also has extra food sensitivities that are messing with the nervous system along with the gluten. I just want to put it out there in case any of you might have some similar issues. My bf and co worker have had similar issues, so I figure I am not the only one and its not as rare as some would make us believe.

 

My bf for instance has been greatly helped sharing my completely gluten free and low saliylate and low amine diet. He no longer falls down and has to crawl on the floor at night, can sleep now like a champ (something he never could do before) plus his ADHD and brain fog and depression  has gone away, his ability to do math and be more aware of social dynamics has soared, plus his migraines are greatly reduced (as have mine by the way).

 

Any thoughts on any of that??

 

I also agree, by using our brains and exercising regularly, taking fish oil (I have to freeze mine--non flavored cod liver oil from Twinlabs) and other supplements, and doing things with our lives, we can and do actually grow new neurons in our cerebellum, making all the difference despite any that got killed off from eating the gluten we ate lo so many years or somehow trace ingested in the past--i.e., it ain't over 'til we give up. And who here is going to do that??

[Kamma]

Pleased to meet you, yolo.  Thanks for sharing your story.  

 

I was wondering if you could speak more about how gluten affects your kidneys.  I have tested positive four times in the last two years for protein in my urine.

[cavernio]

When initially diagnosed, and prior to it, I was worried about possible kidney damage because of a near constant pain in my side and what fit the description of pain for a kidney stone within the previous year. I read quite a few things about kidney damage and then in relation to celiac disease. I never got quite a clear grasp of it, but I recall 2 issues. Firstly, there's the regular nutrient deficiency issues that could causes problems. For instance, kidney stones are often calcium stones that need phosphorous (phosphates?) to break down the calcium. In celiacs who have kidney stones though, they're more likely to be phosphate stones and you need the calcium. And kidney stones block veins which in worst case scenarios can cause that kidney to atrophy. The second thing was simply the work required to constantly filter the excessive antibodies in your blood which wore them out.

Huh, both don't sound like very good explanations now though, not with all the other celiac information I've learned about. I wouldn't be surprised if there would be kidney specific antibodies that wear away at them, just like what can happen to our skin, nerves and, of course, small intestines.

[gatita]

Just a quick update here...

 

My brother still has no diagnosis as to the cause of his ataxia; they ran a full celiac blood panel and all was negative. He's getting a spinal tap today to rule out MS and some kind of cancer. It seems to be getting worse, he told me he had to crawl to the kitchen the other day. It breaks my heart.

 

Any more info about how any of you got your diagnosis would be appreciated.

 

I told him if they tell him they can't find the cause, I'm putting him on a gluten-free diet anyway. He thought he had tried it for a month until he figured out soy sauce has wheat in it...he was eating it every day    I told him whenever he's ready I will go visit him (he's in another state) and spend a week going through the whole routine -- clean kitchen, new strainers, etc.

 

 

ps. cavernio, I didn't know that about kidneys. I've had kidney troubles since I was a teenager!

[frieze]

It would not be surprising for him to test - ,  it is common apparently.  Do some searches on Dr. H....Also check out CoQ-10  and balance.  that is what turned out to be my issue.  good luck

Just a quick update here...

 

My brother still has no diagnosis as to the cause of his ataxia; they ran a full celiac blood panel and all was negative. He's getting a spinal tap today to rule out MS and some kind of cancer. It seems to be getting worse, he told me he had to crawl to the kitchen the other day. It breaks my heart.

 

Any more info about how any of you got your diagnosis would be appreciated.

 

I told him if they tell him they can't find the cause, I'm putting him on a gluten-free diet anyway. He thought he had tried it for a month until he figured out soy sauce has wheat in it...he was eating it every day    I told him whenever he's ready I will go visit him (he's in another state) and spend a week going through the whole routine -- clean kitchen, new strainers, etc.

 

 

ps. cavernio, I didn't know that about kidneys. I've had kidney troubles since I was a teenager!

[Kamma]

Just a quick update here...

 

My brother still has no diagnosis as to the cause of his ataxia; they ran a full celiac blood panel and all was negative. He's getting a spinal tap today to rule out MS and some kind of cancer. It seems to be getting worse, he told me he had to crawl to the kitchen the other day. It breaks my heart.

 

Any more info about how any of you got your diagnosis would be appreciated.

 

I told him if they tell him they can't find the cause, I'm putting him on a gluten-free diet anyway. He thought he had tried it for a month until he figured out soy sauce has wheat in it...he was eating it every day    I told him whenever he's ready I will go visit him (he's in another state) and spend a week going through the whole routine -- clean kitchen, new strainers, etc.

 

 

ps. cavernio, I didn't know that about kidneys. I've had kidney troubles since I was a teenager!

 

 

One of the tell tale signs is the shrinking of the cerebellum in the brain.  This will show up on an MRI.  Some people have extensive damage that it will show up others don't have enough to show the shrinkage.  Another thing is the current blood tests only test for the skin and intestinal manifestations of gluten intolerance and they will not not catch the neurological manifestation resulting in a negative test result.

 

Hadjivassilliou stated that there is evidence that the gluten ataxia people are very sensitive and must stay away from all 'gluten free' processed food and to be very careful with inherently gluten free grains as they could be contaminated.  It can take up to a year to see some improvements on the super strict diet but within that year you can see small incremental changes/improvements.

[gatita]

Frieze -- Thanks, I will look into CoQ-10.

 

Kamma, I will ask him what the MRI showed. All I know is they said "nothing definitive."

 

I also read in PubMed that Transglutaminase 6 antibodies are a good blood test marker for GA, but I wonder if or how anyone ever gets tested for that? It doesn't sound like it's the same TTG that's part of routine celiac tests — or is it?

[frieze]

I think that is out Dr H's research.  and I think it is not generally available, but maybe just very recently???  If you can get it done, do it!  and let us all know.

Frieze -- Thanks, I will look into CoQ-10.

 

Kamma, I will ask him what the MRI showed. All I know is they said "nothing definitive."

 

I also read in PubMed that Transglutaminase 6 antibodies are a good blood test marker for GA, but I wonder if or how anyone ever gets tested for that? It doesn't sound like it's the same TTG that's part of routine celiac tests — or is it?

[gatita]

I think that is out Dr H's research.  and I think it is not generally available, but maybe just very recently???  If you can get it done, do it!  and let us all know.

 

I will and thanks.

[cavernio]

There is another poster here who was recently diagnosed with MS because she was having speech problems not long after going gluten-free. Fairly recent thread, can't remember the subforum tho. She was unconvinced of the diagnosis and thought B12 was to blame, and I found her an article pretty quickly in googlescholar searching for ms and b12 brain imaging whose purpose was to make people aware that b12 deficiency and MS are often comorbid or can be mistaken for each other.

Seems something to consider, especially if he is a celiac since his b12 is likely to be low.

[kathryn md]

Hi Kamma,

 

So pleased to hear back from you  (and a  big thanks for the Edit. link , so useful and I hadn't found that site yet...).

I am still fairly mobile ( use public transit, walk almost every day...) and intend to stay that way. I believe one of the reasons I may have stayed mobile is that I "use" it  each day , including physio exercises for strength and  balance . I too was surprised that my diagnosing specialist ( a top researcher at U.B.C., whose name I won't mention... ) didn't pursue this BUT then she even forgot to notify me of my M.R.I. results- I had to get my G.P. to phone her office 1 YEAR LATER! I was going nuts! Anyway , as you say "that was then, this is now". Yes,  despite what should have happened, it didn't and I am THRILLED at finally seeming to find an answer...even if others "dropped the ball". In fact, I immediately switched to another neurologist and he didn't pick up on anything either. Of course, I was diagnosed in 2004 and knowledge of gluten ataxia was still in it's infancy (  although I discovered info and took it to my specialist, who seemed to know all about it...)

 

Interestingly enough, I have been keeping a journal because it's easy to lose track of how I'm doing/feeling on any given day. This is where  I'm at right now, and I'm curious so maybe you have some ideas. AND I know everyone is different  but there seems to be so few of us out there ( at least, online and sharing!). In my second  gluten free week I had tremendous improvements , even though I probably had a lot of trace and C.C. happening). I could almost run....no kidding. Just before this happened though I had extreme aching and leg pain in my upper right thigh, the very leg that always been the most troublesome. After it went away *( 36 hours) it stopped hurting and straightened out, my balance improved, I became very steady/stable, and , best of all, my mood lifted. I no longer felt "darkness" all day but  had optimism and motivation. Also less fatigue, better fine motor and I wasn't constantly clearing my throat. Now , I'm not doing as well, gait-wise, and I've noticed that my mood and speech improve in "waves", this doesn't seem to be related to what I'm eating or drinking either-like you, I am learning that "whole"  foods are a must and even "gluten free" can be deadly. Do you think it's, "normal" especially early on, to be experiencing these ups & downs"? I Keep in mind that I'm doing much better than I was a few weeks  ago, many of the improvements I've retained even when my gait isn't great and I know it can take A LONG TIME for such long-term neurological damage to respond to treatment and improve . I am pleased to be seeing any improvements-it's all a bonus to me! At Rehab, back in 2004, they laughed at my not being able to use a cane properly. I've encountered this from almost every medical professional I've visited over the years-this might explained why I decided to "drop off the radar" as far as doctors were concerned  .... Thanks again for your good wishes and feedback  =)

 

P.S. After re-rereading your comments you say that healing is not a straight line so I guess my fluctuations are  part of a slow recovery ( even partial ) and not unusuall at all. C.

Hello, so happy to find you all!

 

I'm Kathy, 55, on Vancouver Island. (also a UBC patient). I've been 'diagnosed' with probable multiple system atrophy, My symptoms however sound like everything ive read on gluten ataxia, plus i have a few that sound more like ga than msa. I went gluten-free March 25th 2013 and in the first two weeks noticed an immediate improvement in my speech: more volume, less slur, easier breathing, less choking. By the end of the third week i noticed a much reduced tremor.

 

In the 4th week I noticed that leg spasms and muscle twisting inward of my l leg was absent during the night, when it had woke me up consitantly before. During that time however, I have  had two accidental ingestions of gluten. The first time i noticed my tremor went from very mild to very pronounced. It was still that way  10 days later when i had the second accidental ingestion of a small amount of flour. This time, during 10-36 hours after i noticed a spread of the tremor to include a quaking thru my legs, voice fading and slower, and a bit of slur returning. My left leg dragged for the whole day and leg spasms woke me up again. And my left leg and foot pulled inwards, I couldnt straighten it.

 

Now it is approx. 48 hours since the last gluten, and those symptoms have lessened. Can you kind folks tell me please from your own experience does this resemble gluten ataxia and the changes associated with going gluten-free? I had a gluten test in dec that was neg, however i'd been off it then since nov, then went back on. It felt like my symptoms were gradually getting worse since, so  i decided to give it another go. I feel so on my own, drs dont seem to be informed, either of msa or gluten ataxia! Oh ps... is a strong  urine smell a gluten symptom by any chance? I had it for a couple of years, no infection no diabetes etc, just drink more water say the drs. didnt  help . But it dissapeared with the gluten-free diet, and returned with the gluten ingestion.

 

Thanks for your input, Kathy  

[cavernio]

Celiac disease is an autoimmune condition where gluten triggers your body to attack itself. One of the parts its known to attack is your nervous system. Most of your symtpoms, legs moving, speech slurring, are best explained by a neurological issue.

 

While my neurological issues are far less severe and don't react nearly as quickly as yours are, your smelly urine reminded me very much that I used to, before being gluten-free, need to change my underwear twice a day because it would just smell too bad. I never pinpointed the issue, but I always thought it was vaginal discharge, but that also used to be much worse too.

 

In any case, if you do have celiac disease where your body is damaging your nerves, (which I would say it is), it's very, very important you be super strict about your diet. Different tissue heals differently and unfortunately, the nervous system isn't known to good at repairing itself.

It's possible that you won't test positive even on a biopsy, yet you still have celiac neuropathy.

A peer-reviewed summation article that goes into depth about this stuff. It's long but as far as papers go, it's an easy read.

http://integrativehealthconnection.com/wp-content/uploads/2011/11/Gluten-sensitivity-from-gut-to-brain1.pdf

[kathryn md]

Celiac disease is an autoimmune condition where gluten triggers your body to attack itself. One of the parts its known to attack is your nervous system. Most of your symtpoms, legs moving, speech slurring, are best explained by a neurological issue.

 

While my neurological issues are far less severe and don't react nearly as quickly as yours are, your smelly urine reminded me very much that I used to, before being gluten-free, need to change my underwear twice a day because it would just smell too bad. I never pinpointed the issue, but I always thought it was vaginal discharge, but that also used to be much worse too.

 

In any case, if you do have celiac disease where your body is damaging your nerves, (which I would say it is), it's very, very important you be super strict about your diet. Different tissue heals differently and unfortunately, the nervous system isn't known to good at repairing itself.

It's possible that you won't test positive even on a biopsy, yet you still have celiac neuropathy.

A peer-reviewed summation article that goes into depth about this stuff. It's long but as far as papers go, it's an easy read.

http://integrativehealthconnection.com/wp-content/uploads/2011/11/Gluten-sensitivity-from-gut-to-brain1.pdf

 

Thanks cavernio,

 

I wonder how common the urine smell is? I've only heard of it anecdotally, but some of the other 'probably msa' people I know also have this symptom. smell is still gone... Saw my gp yesterday, he was floored at my improvement over last visit 6 weeks ago. Said last visit I had the parkinsons mask and a grey colour, and i had so much more expression and colour and energy. Having an off day today tho, have to use my walker continually, balance is off and left leg is dragging, eyes watery and sensetive,  nose runny. I'm still getting the hang of this, i had some fries that i thought were ok, but were probably contaminated from frying chicken or something. I think i best not eat anything unless my own two hands have  prepared it!

[Ciel121]

It is so so so great to see someone bring up this topic! I can't put into words how grateful I am that someone brought this up, truly... Anyone I asked looked at me like I was crazy until I found an article online. This might be helpful:

 

http://www.livingwithout.com/issues/4_12/ataxia-2366-1.html

 

   I also started having symptoms of what I described as paralysis. I just couldn't or wouldn't move. I would stare at a wall for hours and hours feeling unable to move. I had the usual brain fog, but this was something more. My vision was odd. I could see but it was like tunnel vision--I could see everything but I could only focus on the center of everything, the peripheral was difficult to focus on. It was so incredibly terrifying because I literally couldn't function. My husband helped me walk around the house. When I was by myself I had to focus so hard just to make food and do everything one tiny step at a time. Does this sound like ataxia? At first I thought it might be MS and I'm so afraid it's going to get worse. I'm going to a doctor in June. Can't wait to figure this out.

  My dad has Celiacs too and he gets so dizzy he fall off ladders all the time (carpenter). He says sometimes it happens when he is driving and he has to drive very slowly. That is shocking, my father doing anything slowly, so I know he must be very affected.

   I have read it takes a long time for the symptoms to improve and I plan to see a Celiac-informed neurologist soon as well. I have also read that exercise really helps. I find that when I have one of my "paralysis" moments I have to push through it, try to move. I have to push myself all the time to move every day despite constant fatigue and when I do exercise the symptoms improve so so dramatically. I really recommend movement. Do all you can. I have read physical therapy is the treatment for ataxia anyway. Warmest wishes and keep moving.

[Ciel121]

Gatita,

I was diagnosed with gluten ataxia in January 2012. I immediately stopped ingesting gluten and within weeks I felt my fatigue lessening. My balance issues and drunken walking still continued however. It was only by going super clean and only eating fresh foods (absolutely no processed foods including 'gluten free' replacements foods as most of these still contain gluten under 20 ppm) and eating very little gluten free grains (because of the cross contamination issues) that most of my issues have resolved. The balance issues started to clear up about six months later and my last seizure was at about the six month mark as well. My neuropathy was the last to go and probably took about nine months. I still have a vertigo / balance issue response if I accidently ingest gluten.

This is amazing to read. My father and I both have some ataxia-like symptoms and when I eliminated all processed foods I noticed it went away and I had more energy, less fatigue. But how do you avoid all processed foods all the time? Isn't that difficult? I find I can't keep it up for too long.