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Ataxia Response To gluten-free Diet?
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38 posts in this topic

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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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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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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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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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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" think i best not eat anything unless my own two hands have prepared it! "

 

Amen.

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" think i best not eat anything unless my own two hands have prepared it! "

 

Amen.

 

Double Amen!

 

So here's the update. Thank goodness our info was wrong about the CT scan -- it was negative. Don't know if the receptionist said something wrong or my brother misunderstood her, but we thought it was something really serious. So that's the good news.

 

My brother started a dialysis kind of thing this week. For ten days they filter all the "extra" antibodies out of his blood (apparently he has way too many and they were attacking his brain). Sounds crazy. But the neuro tells him some people get quick improvement from this. I am praying this is so.

 

The more scientific research I read about gluten ataxia, it seems that a lot of people who get it test negative for celiac and might have NCGI. Since his case is considered idiopathic, i.e. no known cause, I am going to do all I can to get him to go gluten-free, starting with mailing him a big package of all the research about it PLUS a box of gluten-free goodies so he can see he won't suffer without his wheat.

 

Ps. Thanks, anabanakins, that's useful and encouraging info! Ciel, I hope you get answers soon.

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Hello Gatita,

 

I hope your brother responds to going gluten free.  It would be great news if this is what is causing his ataxia and you can eliminate the cause (as opposed to it be idiopathic.)

 

Keep us posted on how he makes out.

 

Kind regards.

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" think i best not eat anything unless my own two hands have prepared it! "

 

Amen.

 

Amen!

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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 :) 

 

 

Hi Kathy,

 

It's been awhile since I saw your post back in April. I meant to comment back then but I've been so overwhelmed by this  whole  gluten business that I had to step back for an emotional breather.  Now I feel I'm ready to get back into the game! Firstly, how are you doing?  Everything can change so often and so fast with having gluten ataxia  and then attempting to go gluten free that sometimes "progress"  doesn't seem to be happening. Like you, I was diagnosed at U.B.C.,  by Dr. Sian Spacey, absolutely NO help at all. Anyway, I switched immediately to another ( personable) neurologist back then but haven't  been to see a  specialist about the ataxia  since '05. It seems there hasn't been much research done on GA ,  and only in the past few years-I knew about GA back  at my diagnosis, asked to be tested for gluten intolerance back then. I allegedly was tested and the results were negative ( they often are for GA I discovered ) and was told, basically, that was it for me...I  say "allegedly" because the neurologist's office "forgot" to phone me with my MRI results! Meanwhile I've had toe/finger tingling over the years , as well as a white lesion on my MRI that didn't arouse anyonbe's attention, unexplained double vision last year, cerebellar atrophy, stiff ankles, vertigo,  most other typical GA symptoms and also a terrible depression that is starting to lift.  In  my research I've found:

- neuroligical issues are notoriously difficult/slow to heal ( but not impossible)

- many people with GA  give up after a few months on a gluten free diet

- "gluten free" often isn't. I stay away from most gluten-free products as well as all cereal grains, yeast ( see "gluten Dude" article ), have rice sparingly, dairy & sugar moderately, eat mainly "whole foods" ie. fruit, veggies, legumes, eggs, nuts, organic tofu, I really don't like meat but have bits occasionally and I don't mind fish. What works for me might not work for someone else-it's so individual.

- symptoms may get worse before they get better-it can be 6 mo.-1year before ANY progress is made. I've been doing well, but I'm sure I've got some trace or cross contamination exposure. It's been a roller coaster ride! I do GREAT for a few days then REALLY bad ( worse than before!) Then there's "withdrawal" symptoms you can go through, especially if you've been full of gluten for years (me)

I could go on, but , for now, be in touch if you like. It's so rare to contact anyone with GA let alone someone nearby ( I'm in Vancouver)

 

clevercate

 

( P.S. good reading material)

http://www.healthboards.com/boards/celiac-disease/884267-gluten-ataxia-please-share-your-symptoms.html   (very good )

 

http://www.livingwithataxia.org/forum/topics/gluten-ataxia

( post by SUSAN JENNINGS on January 10, 2011 )

 

 

...

Edited by clevercate
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Just posting an update here about my bro and thanks again to all who responded. I sure hope you all have found some relief!

 

The bad news is my brother's condition is much worse. He is wheelchair-bound and also suffers severe "rubral" tremors (full body tremors pretty much anytime he reaches for something.) The tremors are worse than the ataxia! His doctor has ruled out so many conditions and still doesn't think it's MS although it's possible.

 

The only good news is I went for a visit, cleared out his kitchen and trained his daughters in what's gluten-free and what isn't... and he is now as close to 100% gluten-free as any of us can be.

 

Oh, the other good news is that the famous Dr. Hadjivassiliou (we call him Dr. H) has agreed to look at my brother's medical records, so we are eagerly awaiting his opinion.

 

It is soooooo extremely frustrating and heart-wrenching to watch an otherwise healthy man just collapse like this in a matter of months. But I thought I'd let everyone know how it's going. I'd say he's been gluten-free for almost a month now. At least Portland is an easy place to do it!

 

 

ps. I should add that he has tested positive for very high amounts of antibodies (I don't know to what) and so they ARE sure it's an autoimmune condition. He's also low on B12 and D.

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Just posting an update here about my bro and thanks again to all who responded. I sure hope you all have found some relief!

 

The bad news is my brother's condition is much worse. He is wheelchair-bound and also suffers severe "rubral" tremors (full body tremors pretty much anytime he reaches for something.) The tremors are worse than the ataxia! His doctor has ruled out so many conditions and still doesn't think it's MS although it's possible.

 

The only good news is I went for a visit, cleared out his kitchen and trained his daughters in what's gluten-free and what isn't... and he is now as close to 100% gluten-free as any of us can be.

 

Oh, the other good news is that the famous Dr. Hadjivassiliou (we call him Dr. H) has agreed to look at my brother's medical records, so we are eagerly awaiting his opinion.

 

It is soooooo extremely frustrating and heart-wrenching to watch an otherwise healthy man just collapse like this in a matter of months. But I thought I'd let everyone know how it's going. I'd say he's been gluten-free for almost a month now. At least Portland is an easy place to do it!

 

 

ps. I should add that he has tested positive for very high amounts of antibodies (I don't know to what) and so they ARE sure it's an autoimmune condition. He's also low on B12 and D.

 

Thank you for the update, Gatita although it isn't as good of news as you probably hoped for.  I'm sorry about that and yes, it's hard to see someone disintegrate in front of  your eyes.  Your heart gets wrenched around and you want to do as much as possible to bring them back to health.  Your brother is fortunate to have a sister such as you.  :)  

 

Remember, it it's gluten ataxia it will take longer to recover than what the normal recovery course is for celiac.  If there is no damage to the cerebellum, you should see incremental improvements over months.  If there is damage to the cerebellum, which is permanent, recovery might look a little different.  Also, people with gluten ataxia seem more sensitive to lower levels of gluten so it might be wise to go super clean and really watch for cross contamination in other grains and definitely reduce 'gluten free' processed products if you haven't already.  

 

I'm glad you have Dr. Hadjivassilliou looking at your brother's records and I hope he can provide some answers and a way to go from here.  Half the anxiety is not knowing and once you have a diagnosis you can find a path to treatment.  

 

Keep me posted.  A big hug to you.

:)

Kamma

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Thanks Kamma for the warm thoughts.

 

Unfortunately, Dr. H said my brother's MRI did not appear typical for gluten ataxia, although he stressed that MRIs are not definitive.

 

My brother's neuro has him back on gluten after several months gluten-free, because she wants to do a celiac endoscopy in a couple of months. I don't see the point since he never had gastro symptoms and his bloodwork was negative. My understanding that many gluten ataxia patients never have intestinal damage.

 

The only good news is he is able to swim and that gives him some pleasure. I've heard that some neuros recommend gluten-free diet to ALL their ataxia patients just to reduce inflammation, so he is considering going back on it.

 

One day at a time... thanks for all the input and kind thoughts.

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