Do tabs help?

[Arslan]

Wanted to know if tablets help in cases of gluten ataxia or is just gluten free meal enough? It would be very helpful if someone recovered from it replies.... Thanks...

[trents]

Tablets? Do you refer to some kind of medication or to electronic devices?

[Arslan]

medication, obviously

[trents]

What medication? Is there actually something out on the market for Celiacs? There's been a lot of experimentation and maybe some things in trial but is there actually a med out now that works?

[cyclinglady]

  On 5/2/2018 at 1:24 PM, trents said:

What medication? Is there actually something out on the market for Celiacs? There's been a lot of experimentation and maybe some things in trial but is there actually a med out now that works?

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Nothing pharamaceutical as of January of this year.  I was at a celiac lecture with Dr. Sheila Crowe.   She is currently the GI Association President and works out of UC San Diego.  The gluten free diet is the only treatment and probably will be for a while.  

Gluten Ataxia is still a relatively new disease and is very rare.  A very strict gluten-free diet is required.  

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[Arslan]

  On 5/2/2018 at 1:58 PM, cyclinglady said:

Nothing pharamaceutical as of January of this year.  I was at a celiac lecture with Dr. Sheila Crowe.   She is currently the GI Association President and works out of UC San Diego.  The gluten free diet is the only treatment and probably will be for a while.  

Gluten Ataxia is still a relatively new disease and is very rare.  A very strict gluten-free diet is required.  

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I did read this topic before. Is it true that gluten ataxia has no treatment? Can we get better if we start a gluten free diet. Can a person get 100% fit this way?

[Arslan]

  On 5/2/2018 at 1:24 PM, trents said:

What medication? Is there actually something out on the market for Celiacs? There's been a lot of experimentation and maybe some things in trial but is there actually a med out now that works?

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No. For managing cerebellar atrophy like Co enzyme Q10 or Lerace.

[ravenwoodglass]

  On 5/3/2018 at 9:31 AM, Arslan said:

I did read this topic before. Is it true that gluten ataxia has no treatment? Can we get better if we start a gluten free diet. Can a person get 100% fit this way?

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The only treatment for gluten ataxia and other neuro impact is the diet. Followed very strictly. Recovery from neuro impact is slower than for gut impact but it can occur. How much healing takes place is hard to say. Some will recover quickly and completely and others will not get back to 100%. I think the folks, like myself, that have residual damage are folks that went undiagnosed for a long time. I do still have some premanent impact but it doesn't keep me from leading a full and productive life. If gluten ataxia is the cause of your problems hopefully you will recover fully but you do have to be patient as hard as that may be.

[ravenwoodglass]

  On 5/3/2018 at 9:33 AM, Arslan said:

No. For managing cerebellar atrophy like Co enzyme Q10 or Lerace.

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I am not familiar with Lerace. Supplements are not going to hurt. I found subligual B 12 to be helpful. Just be sure to tell your doctor what you are taking and stop them for a week or two before your doctor checks your nutrient levels.

[Ennis-TX]

I have gained back some feeling in my hands, and am starting to gain back heat sensitivity over the past few years. It seems to get worse with glutenings. But after my last exposure earlier this year and being very strict with my diet and supplementing a bit more I am noticing the feelings more. I still can not do math any easier and my comprehension of complex things still just blobs out. Computer programming I took in college still is broken and no easier to understand....
I take supplements like many different neurological support ones, B-vitamins, bilberry, qc10, and recently some boosters for testosterone and stuff for ketogenic brain fuel like MCT oils. Of which I can not see which particular ones are helping.
Brain damage wise...I am seeing little improvement, nerve damage wise I am seeing some improvement. But studies I have seen say it can take decades for nerve and brain damage to heal.

[Arslan]

A decade? Is it a maybe or for almost sure? It's very hard to be patient given the circumstances.

[ravenwoodglass]

  On 5/3/2018 at 1:56 PM, Arslan said:

A decade? Is it a maybe or for almost sure? It's very hard to be patient given the circumstances.

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Different folks take different amounts of time to heal. I was able to walk unaided within 6 months and went back to work within a year. It did take up to 5 years for most of my problems to resolve but I was sick for decades. Try to think as positively as you can and a physical and/or occupational therapist can be very helpful in speeding the healing and helping you learn coping strategies while you heal. For example I was encouraged to always make sure that my keys are put in the same place every time I come in the door. Before I was healed I would forget where I put them in seconds. Hard as it is try to stay as positive as you can. Healing is an insideous process that takes tiny steps but you can heal. 

[Ennis-TX]

  On 5/3/2018 at 1:56 PM, Arslan said:

A decade? Is it a maybe or for almost sure? It's very hard to be patient given the circumstances.

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Depends person to person, but brain damage and spinal damage are really slow to heal. If your ataxia is peripheral then it should heal much faster. But also consider if it is in the brain the human body/brain can rearrange neurons to restructure itself to compensate for damage. So there are many variables to consider.

[Arslan]

  On 5/3/2018 at 8:24 PM, ravenwoodglass said:

Different folks take different amounts of time to heal. I was able to walk unaided within 6 months and went back to work within a year. It did take up to 5 years for most of my problems to resolve but I was sick for decades. Try to think as positively as you can and a physical and/or occupational therapist can be very helpful in speeding the healing and helping you learn coping strategies while you heal. For example I was encouraged to always make sure that my keys are put in the same place every time I come in the door. Before I was healed I would forget where I put them in seconds. Hard as it is try to stay as positive as you can. Healing is an insideous process that takes tiny steps but you can heal. 

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By saying unaided, do you mean unaided with normal gait?

[ravenwoodglass]

  On 5/7/2018 at 3:13 AM, Arslan said:

By saying unaided, do you mean unaided with normal gait?

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Before diagnosis I needed to use either canes or walls to be able to walk comfortably. While my balance improved within 6 months it did take PT to improve my gait along with time. Before diagnosis an electromylogram for one leg had a flat line result showing that nerve impulses we not getting to my right leg. That took longer to heal than my balance.

[Arslan]

But you are normal now?