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Brain changes with Gluten Ataxia/Nerve symptoms
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Brain changes with Gluten Ataxia/Nerve symptoms

Hello
I'm currently in limbo land trying to figure out whether I have gluten ataxia and/or MS.   I have all the usual symptoms common to GA and MS.   My GP thinks MS as she disagrees that gluten sensitivity can cause neurological symptoms.  

With the nerve pain common to gluten ataxia, how does this manifest itself in most people?  I've had an EMG which was negative and gather it would be if it was gluten ataxia because its the small nerve fibres that are attacked, but it would also be normal with MS as its a CNS issue.  I have constant pain in my left arm and right foot and episodic pain in other parts of my body.  It started off as pins and needles hands and feet, morphed into pain and migrated up my limbs.  It feels like I've laid my hands/feet flat in a frying pain.  Now I'm on Amirol for it, things have improved but there is still a bit of breakthrough pain.  I also have global weakness on one side and if I'm exposed to fluorescent lights, this turns into weakness on both sides, plus I'm like a drunk walking around.

I had an MRI last year when I was admitted for sudden onset deafness with severe vertigo and a brain tumour was suspected.  No brain tumour was found but it did show a few areas of increased T2 signal in the periventricular white matter.  The radiologist said this was probably just small vessel ischaemic change but I have no risk factors for this.  I'm young, don't smoke or drink, no migraines, hypertension, high cholesterol etc etc.  No cerebellar atrophy was found.  Is this finding common to gluten ataxia?

I tested negative for Celiac, twice but did come up moderately reactive on an IgG blood test through US Biotek for a gluten sensitivity.  I have gone gluten free and definitely feel better.  When I eat gluten now, I do get a reaction but not a major type reaction that I've heard people with gluten ataxia can get so I really don't know whether this is 'it' or not.  

I'm getting to the point where I'm desperate for some answers.  Working is a real struggle as my office has fluorescent lights and I spend my day staggering around like I'm drunk, shake like crazy and can't even think straight enough to do a good job.    I've been referred to a Neurologist but the waiting list is extremely long and as my condition isn't going to kill me, I'm near the bottom of the list.
Many thanks
Poppy
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Avatar_f_tn
Hi Poppy,

I  am glad you posted in this  forum too. It is very slow here, but maybe someone else  will read and chime in too.
I am  sorry you are not well and wiithouut answers,

I beg to differ     with your GP. Gluten can  and does cause neurologicall symptoms and changes. If you google Gluten Ataxia there are papers written that discribe this.
There doesn't need to show cerebellar   atrophy on mri,although more than half will have atrophy, and other changes can be seen. I   am not exactly sure what those changes see, but I know one fact my friends mother with celiac and had many increase signalll (t2) on her mri's.

Paresthesia (abnormal sensation, i.e. pins  needles/pain/etc)  is   commonly found in G.A. as well as M.S.and a host of other conditions. I hope you can get more relief with your medicine.

Vision issues certainly come with C.A. Have you  had a VNG (video nystagmography ?) That test would determine if you have eye movement problem stemming from CNS issue. Life and the world can seem rather chaotic  when you are vision is not right.
I know gluten can trigger migranes (migraines), that could be one possibility.

It is sometimes a catch 22, you feeel better being gluten free, but testing when you have been without may be skewed. Some people will do a gluten challenge if they have been GF for some time to get a reaction.
It has been sometime since   I read about the blood testing for the AntiGliadin Antibodies, and things have changed. I   do know there is very specific and not the same tessts as for celiac. I can try to find it.

Have you beenn looked at your thyroid? If not that could be something done until you see the neuro. Unfortunately the are SO MANY reasons and possible dagnosis and when you are dealing   with being ill it can be   so difficult.

I'm happy to hear you did not have the tumor when you had the mri. I do hope when you see your neuro you will have your copy of your MRI to be sure they read it them self. Radiologist do not always see everything on the scan. (I have have many mri and not one radiologist noted the cerebellar atrophy that all my neuros continue to point out!)

I am sorry if I  am sounding confusing. Please do not hesitate  to ask more.
How long have you been feeling unwell?
The neuro world can be such a long and slow process and seem forever to get answers.
Take care today and be safe. Amo
7 Comments Post a Comment
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Avatar_f_tn
Hi Poppy,

I  am glad you posted in this  forum too. It is very slow here, but maybe someone else  will read and chime in too.
I am  sorry you are not well and wiithouut answers,

I beg to differ     with your GP. Gluten can  and does cause neurologicall symptoms and changes. If you google Gluten Ataxia there are papers written that discribe this.
There doesn't need to show cerebellar   atrophy on mri,although more than half will have atrophy, and other changes can be seen. I   am not exactly sure what those changes see, but I know one fact my friends mother with celiac and had many increase signalll (t2) on her mri's.

Paresthesia (abnormal sensation, i.e. pins  needles/pain/etc)  is   commonly found in G.A. as well as M.S.and a host of other conditions. I hope you can get more relief with your medicine.

Vision issues certainly come with C.A. Have you  had a VNG (video nystagmography ?) That test would determine if you have eye movement problem stemming from CNS issue. Life and the world can seem rather chaotic  when you are vision is not right.
I know gluten can trigger migranes (migraines), that could be one possibility.

It is sometimes a catch 22, you feeel better being gluten free, but testing when you have been without may be skewed. Some people will do a gluten challenge if they have been GF for some time to get a reaction.
It has been sometime since   I read about the blood testing for the AntiGliadin Antibodies, and things have changed. I   do know there is very specific and not the same tessts as for celiac. I can try to find it.

Have you beenn looked at your thyroid? If not that could be something done until you see the neuro. Unfortunately the are SO MANY reasons and possible dagnosis and when you are dealing   with being ill it can be   so difficult.

I'm happy to hear you did not have the tumor when you had the mri. I do hope when you see your neuro you will have your copy of your MRI to be sure they read it them self. Radiologist do not always see everything on the scan. (I have have many mri and not one radiologist noted the cerebellar atrophy that all my neuros continue to point out!)

I am sorry if I  am sounding confusing. Please do not hesitate  to ask more.
How long have you been feeling unwell?
The neuro world can be such a long and slow process and seem forever to get answers.
Take care today and be safe. Amo
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Avatar_f_tn
Hi Amo
Thanks for your reply.  I've read lots of papers on this GA thing and definitely see it as a possibility for me.  Kind of hoping its my problem instead of MS.    Its just some 'odd' symptoms that I can't seem to link to GA that make me wonder - sudden deafness, sound sensitivity, fluoro light thing, proprioceptive issues etc, but I can find them as MS symptoms.  

I haven't had a VNG but as far as I know evoked potentials will be organised after I've seen the Neuro.

My GP has done a whole host of blood tests to rule out as much as she can, including thyroid, ANA and the one for SLE.  

This thing has been going on since about February last year so I'm completely sick of it by now.  I've had two episodes that were quite 'discrete', ie they had a beginning and an end so that's probably what made my GP think MS.  I'm at the point where I don't care what it is, I just need a label to I can deal with it.

Many thanks
Poppy
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Avatar_f_tn
Please check out Dr. Steven Gundry, and The Center for Restorative Medicine. A Gluten-free diet may not be enough, as Lectins have been found to be the responsible aggravator, and in found in all grains and many vegetables. Search for Lectin-free diets. Also check out http://www.dogtorJ.com, a vet that found solving the problems in pets' diets were solving the owners diets too!
My spouse and I are on the lectin-free diet and my mother has been diagnosed with severe gluten ataxia. Although I'm having a difficult time convincing the rest of my family; I think it is the main factor is all of her many health issues; including vertigo, deafness, arthritis, IBS, fog-brain as well as heart issues. I would love any additional research others find; as the medical community is just starting to study Lectin-free diets.
Great recipes can be found at http://www.elanaspantry.com.
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Avatar_f_tn
Hii Happy,
(i  do like your name herre:)
Welcom e to the Ataxia forum ( you see how slow it is here)
Well, to be honest, I personally am not very knowledgeable when it comes  to indepth facts  on the science side of of  dietss. This  maay bee some of  why for many  a very striict G/F diet alone is not enough???
I haven't looke  on the sites links you posted but I will soon and hope we can learn even more.
I hope your mother finds some relief soon.
Thanks for the insight  and have a good day,
Amo
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Avatar_m_tn
Dear Poppy,

My symptoms sound exactly the same as yours and I took have acute fluorescent light sensitivity (dizziness/vertigo when under them), as well as feeling unsteady when I walk even in norma lighting. Often I have pins and needles on my head and face, and a feeling of malaise/fatigue and generally being unwell/spaced out. This has been going on for over a year (began suddenly with possibly a viral infection in April 2013). Did your symptoms improve or go away? What did you do, if so, to get better? Any advice or update on your condition would be much appreciated!
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Avatar_f_tn
Hi gabi

Sorry to hear you are going through these troublesome symptoms.  My fluorescent light sensitivity settled in about May 2013, so took about 10 months.  In the interim I found that brown polarised sunglasses made a huge difference.  

With lots of research I was able to find out that it was probably related to something happening with my pupils and not my optic nerve as I'd initially thought.  I now have miosis so my pupils permanently stay constricted and don't dilate in dim lights.  

Unfortunately all roads in the end have led to MS and the fluorescent light thing was only the beginning of one very horrible nightmare.

Good luck with finding an answer.  Feel free to message me privately if I can help you in any way.

Best wishes


Poppy
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Avatar_m_tn
Dear Poppy,

Thank you so much for your very helpful and thoughtful reply. I am very sorry to hear about the MS diagnosis. I hope that you feel better soon. I will be seeing a doctor this month about the fluorescent lighting aggravating my dizziness and to discuss other ataxia symptoms I have been having. I hope that they are just a side effect of an inner ear virus from last spring and not something chronic. Thank you again, and very best wishes.
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