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Ataxia Response To gluten-free Diet?


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#16 Kamma

 
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Posted 12 April 2013 - 05:40 PM

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  :blink:  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.


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#17 gatita

 
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Posted 15 April 2013 - 07:55 AM

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?


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#18 frieze

 
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Posted 17 April 2013 - 10:24 AM

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?


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#19 gatita

 
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Posted 22 April 2013 - 08:07 AM

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.


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#20 cavernio

 
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Posted 22 April 2013 - 05:01 PM

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.


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#21 kathryn md

 
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Posted 22 April 2013 - 06:49 PM

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 :) 


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#22 cavernio

 
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Posted 23 April 2013 - 01:27 AM

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://integrativehe...t-to-brain1.pdf


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#23 kathryn md

 
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Posted 24 April 2013 - 05:14 PM

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://integrativehe...t-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!
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#24 Ciel121

 
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Posted 24 April 2013 - 08:28 PM

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.livingwit...xia-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.


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#25 Ciel121

 
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Posted 24 April 2013 - 08:56 PM

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.


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#26 Kamma

 
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Posted 25 April 2013 - 05:35 AM

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?

 

M. Hadjiivasilliou is doing clinical trials on the ttg6 blood test.  He just released confirmation of a recent study that pointed that ttg 6 antibody response can be used as a marker in gluten ataxia.  It will takes some time for the test to make it it to the mainstream.  He's been working on this test for the last couple of years so perhaps it will be ready for the market soon.


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#27 Kamma

 
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Posted 25 April 2013 - 05:41 AM

Ciel, 

 

Eating whole foods is the best way to go.  Fruit, vegetables, meat.  I stay away from grains as well because of the cross contamination.  In the beginning it is difficult but the better you feel, the more momentum and motivation you have to stay on the path.  The real confirmation that you're doing the right thing is when you accidentally ingest gluten from what appears to be a non-gluten source and have your symptoms ramp up.  I was very sick for a long time - unable to leave the house.  Have a life, being able to walk properly and not have seizures is a motivation in and of itself to stay on the path.

 

Your symptoms do sound like they are reflective of gluten ataxia but I would hate for you to take a diagnosis from a stranger on a forum!  :)  The best way to go about things is just as you are:  eliminating gluten and seeing how you're body responds.  If you notice your symptoms dissolving and not returning for quite a while on a gluten free diet, then I would trust that you have gluten ataxia.

 

Kind regards,

Kamma


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#28 gatita

 
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Posted 26 April 2013 - 09:38 AM

M. Hadjiivasilliou is doing clinical trials on the ttg6 blood test.  He just released confirmation of a recent study that pointed that ttg 6 antibody response can be used as a marker in gluten ataxia.  It will takes some time for the test to make it it to the mainstream.  He's been working on this test for the last couple of years so perhaps it will be ready for the market soon.

 

Thank you for this! I sure wish they could do the test now... My brother's getting some more news this afternoon, I will update soon. His neurologist said yesterday she was sure he's having an extreme autoimmune response... but now an abdominal CAT scan is showing something else. :( It's very scary.


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#29 anabananakins

 
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Posted 26 April 2013 - 07:02 PM

just for another data point, I tested negative to celiac and I don't the most common genes, but I'd read some of Dr H's research and since I had lots of balance problems in addition to the gastro stuff, I was determined to go gluten free even without a diagnosis.  It probably took about 3 months before I noticed any improvment in the neuro stuff (yet only 3 days for the gastro improvements) and maybe 6-8 months before it was heaps better.  If I get glutened one off, I don't have any neuro issues but if it's a tiny amount over a few days (as has happened  when I was travelling and had less control over my food) my balance goes really wonky again. Since I'm not used to it, it feels even worse than  before.

 

Best wishes to your brother Gatita, it sounds very scary :-(


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#30 Ciel121

 
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Posted 26 April 2013 - 07:31 PM

Ciel, 

 

Eating whole foods is the best way to go.  Fruit, vegetables, meat.  I stay away from grains as well because of the cross contamination.  In the beginning it is difficult but the better you feel, the more momentum and motivation you have to stay on the path.  The real confirmation that you're doing the right thing is when you accidentally ingest gluten from what appears to be a non-gluten source and have your symptoms ramp up.  I was very sick for a long time - unable to leave the house.  Have a life, being able to walk properly and not have seizures is a motivation in and of itself to stay on the path.

 

Your symptoms do sound like they are reflective of gluten ataxia but I would hate for you to take a diagnosis from a stranger on a forum!   :)  The best way to go about things is just as you are:  eliminating gluten and seeing how you're body responds.  If you notice your symptoms dissolving and not returning for quite a while on a gluten free diet, then I would trust that you have gluten ataxia.

 

Kind regards,

Kamma

Thanks! And that is so funny about taking advice from forums. I have that thought all the time. I have a doctor appointment at the Celiac Center at Columbia, so I'm sure I'll get clinical answers there, but it's great to hear other stories from people. Best health to you! I hope you have many pleasant spring days walking in the sunshine. :-)


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