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Gluten Ataxia Vs. Neurological Problems Due To Nutritional Deficiencies


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#1 T.H.

 
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Posted 23 October 2011 - 01:02 PM

From what I've seen, those with Gluten Ataxia are often undiagnosed because there are so few doctors who even have a CLUE what to look for, let alone how to diagnose it. So there's not a lot of us with official gluten ataxia. A few more of us at least have recognition from the doctor re: nutritional issues and our nervous system, but even that seems to be sadly lacking among doctors I'm haring about.

I'm wondering what other people consider to be THEIR neurological issue, and why they believe it's one or the other (ataxia or nutrition)?

Do you believe you have Ataxia, or do you believe you have neurological issues from nutritional deficiencies? What are your symptoms? What makes the symptoms better?


For me, I have what I think of as my ataxia symptoms within a few minutes of eating gluten. My speech starts slurring badly, I have huge waves of vertigo, and I have problems thinking or comprehending what people around me are saying. Pretty much look like I'm completely drunk, LOL. For a few days, I have flare-ups in pain and tingling in certain nerves in my limbs. The thinking gets clearer after a few hours, a day or two at most. The vertigo takes a few weeks to completely resolve. The nerve pain is usually a few days, as well.

I started thinking ataxia was my problem because it happens so quickly, when there's just no chance for vitamin deficiencies to be an issue yet. Also, eating foods higher in certain vitamins doesn't seem to make any difference in my healing progress at all, which seems to help some who are having neuro issues that are nutrition based. I haven't found anything yet that makes the healing go any faster, actually, so strict avoidance of gluten cc is all I can rely on for the moment.


So does anyone else want to share what their neuro symptoms are, how they manifest, what you think is the cause? Or more importantly, if anything helps the symptoms resolve quicker?

This gets so little help from the docs, maybe we can help each other a bit by sharing info. in our community. :-)
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


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#2 ravenwoodglass

 
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Posted 23 October 2011 - 02:58 PM

I know what I have is ataxia because I have the brain lesions that are diagnostic of it. For me the ataxia is a balance issue. I will get a sense that I am falling to the right within a short time of injesting gluten. I also have trouble with speech but both are now rare occurances.
It turned out my parathesias were due to vitamin deficiencies and those resolved with the aid of B12.
I do think that the neuro problems that we see can be a combination of the two. If someone is well healed and their nutrient levels are in normal ranges then a sudden occurance of neuro symptoms after a glutening would IMHO be part of the antibody attack on the nervous system.
The medical definition of ataxia according to the Mayo clinic is:

http://www.mayoclini.../ataxia/DS00910

"Ataxia describes a lack of muscle coordination during voluntary movements, such as walking or picking up objects. A sign of an underlying condition, ataxia can affect your movements, your speech, your eye movements and your ability to swallow.

Persistent ataxia usually results from damage to your cerebellum — the part of your brain that controls muscle coordination. Many conditions may cause ataxia, including alcohol abuse, stroke, tumor, cerebral palsy and multiple sclerosis. It's also possible to inherit a defective gene that may cause one of many ataxia variants.

Treatment for ataxia depends on the underlying cause. Adaptive devices, such as walkers or canes, might help you maintain your independence despite your ataxia. You may also benefit from physical therapy, occupational therapy and speech therapy."
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 pondy

 
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Posted 23 October 2011 - 03:26 PM

Some of my neurological symptoms are difficulty concentrating, balance issues & forgetfulness.

I have lab orders in for a B12 level check. I have not seen a neurologist yet. Anyway, these symptoms are almost constant - accidentally glutened or not.
  • 1
"It is not the strongest of the species that survive, nor the most intelligent, but the ones most responsive to change"
- Charles Darwin

#4 sreese68

 
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Posted 23 October 2011 - 04:08 PM

Neuro problems from celiac are not always due to nutrional deficiency. I get neuropathy, hypoglycemia, anxiety, brain fog, irritability, fatigue, lightheadedness, etc from eating gluten, but my nutrient levels are all normal. Gluten can cause the immune system to directly attack the nervous system. And this is what my neurologist believes is happening in my case (very forward-thinking guy). My GI difficulties have shown up in the way of many secondary food intolerances.
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Sharon
gluten-free March 2011
Failed gluten challenge May 2011
Diagnosed celiac 5/25/11

#5 dilettantesteph

 
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Posted 23 October 2011 - 07:17 PM

This is a video of a presentation by Heidi Schwarz a neurologist, who thinks that it is an autoimmune reaction, and not nutritional deficiencies.

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#6 eatmeat4good

 
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Posted 23 October 2011 - 10:08 PM

I start bumping walls, losing coordination, dropping and fumbling things in the kitchen, am unable to put thoughts into words, and it is so profound that I feel dazed and confused and appear to be "drunk". I have fallen down and lose my bearings on reality. I feel delirious and nauseous and grief-stricken at the same time, but I am unable to express any of it due to the inability to formulate a sentence the way I want to.

This all happened to me at my sickest on gluten. In the year I have been gluten free, there have been small episodes of uncoordination. Dropping things, or having to think about each step while walking. But nothing compared to what it was when I was at my sickest. If I am glutened accidentally I won't drive. My judgment is impaired and I don't feel that I can process mentally or react physically well enough to drive.

I don't know if it was neurological, ataxia or nutritional. But when I found out that these symptoms could be related to Celiac and may resolve on a gluten free diet, I had to try. Sure enough, as long as I am absolutely strictly gluten free, none of these things happen. I only got the words for what was happening to me all those years when I was sick when I came on here. I have no Dr. who uses the words neurological, or ataxia, or nutritional deficiencies. I don't know where to find those Dr.'s but I guess they can't help me anyway. Gluten attacks my brain and then my body and it is absolutely Kryptonite for me. Only thing I can do is avoid it...and sleep it off if it attacks me.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#7 AVR1962

 
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Posted 24 October 2011 - 12:46 AM

Shauna, this has been a big issue for me. 8 months now with off-balance and have been glute-free for 6 months. I read and keep reading, I have experimented trying to find a solution.

This is what I have come up with. If I have any gluten I will be dizzy for a minimum of 3 weeks and there is very little I can do to speed up that process. It does getting better with time but the first week is miserable. Not only am I dizzy but my vision issues (blurring) may come back, speach gets messed up and I have trouble thinking, memory issues, headaches, tired.

However, I have nuero issues that I relate malabsortion which do seem to be getting better but I do do relate these to the ataxia issues. They are as follows: Vit D- to help absorb calcium, irritability and dizziness or vertigo, crawling sensation on skin, joint pain, poor concentration, memory. I know alot of these are mentioned with the gluten symptoms but the thing with the gluten symptoms is they do pass eventually except remaining dizzy and that could be from continually glutening.

B Complex, WSN Nerve Support Formula (4 daily) each contain thiamine- 103mg, Methyl B12- 1000 mg, B2- 2 mg, B6- 2 mg, folic acid- 100 mcg, B3- 250 IU for tingling in hands or feet, hot feet, anemia, nerve damage, buzzing in ears, neuropathy issues. This works wonders for me. I have tried B12 and B6 alone and I have taken a coenzyme B complex and did not find it worked as well as this product to help with my nuero issues.


I have tried copper and idebenone which are supposed to help with ataxia but I have not found them of any help. Last night I was reading that a combo of L-carnitine, alpha lipoic acid, gamma linolenic acid (GLA or Borage oil), chromium with a b complex and magnesium are supposed to help. I do take L-carnitine and magnesium. I linked the carnitine to helping the pins and needles stabbing pain in my eyes, toes and in between my fingers. I have ordered the mentioned items. Also found material while reading that Amla juice is supposed to help with dizziness.

One thing I do feel agitates the ataxia is alcohol. And I do find if I take in more vit D I feel better, less dizzy. I upped my vit D for a week to 10,000 units a day and felt like it did help but it didn't go away completely so went back to my 5000 daily, didn't notice a change and still looking for a solution.
  • 1
Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#8 AVR1962

 
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Posted 24 October 2011 - 01:39 AM

Neuro problems from celiac are not always due to nutrional deficiency. I get neuropathy, hypoglycemia, anxiety, brain fog, irritability, fatigue, lightheadedness, etc from eating gluten, but my nutrient levels are all normal. Gluten can cause the immune system to directly attack the nervous system. And this is what my neurologist believes is happening in my case (very forward-thinking guy). My GI difficulties have shown up in the way of many secondary food intolerances.

I never thought of it in this way, that the glutens could actually be attacking the nervous system rather than the villa being damaged by glutens which then was causing malabsortion which lead to nerve damage. Before I went gluten-free my blood calcium levels were hyper (above normal) and docs thought I had parathyroid disease. When I went off glutens my calcium went into normal range and inafct went almost hypo. I read that glutens can cause various organs to swell as they are a toxin to the body. My paparthyroids resembled a tumor and have found out since that many people have their parathyroid glands removed mistakenly for this reason. I was one of the lucky ones who went gluten free first before having the surgery.

Thanks ladies for all the replies and the post. I found it all very informative. I am really really hoping that with time without more accidentaly glutening I will be able to be dizzy-free!!! Meanwhile, my vits are really helping!!
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#9 weluvgators

 
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Posted 24 October 2011 - 06:29 AM

My DD at 6 yo was having severe ataxia symptoms with gluten exposure - falling for "no reason", speech problems - both stuttering, forgetting words, losing track of what she was saying. After a severe episode that progressed in horrible ways last year, we tried to do more investigation with some terrific results. As hard as it is to find a doctor with gluten ataxia knowledge, the pediatric healthcare is even worse - her physical/occupation therapists and pediatricians just have no knowledge (other than what I have shared with them). I try to bring them the adult information in hopes that they will be able to apply it to their pediatric patients, but they have a hard time wrapping their heads around it being a possible pediatric issue.

So, while our DD's serum B12 levels always looked fantastic, we used another test that helped demonstrate that she was not uptaking her B12 - it was all getting dumped. We were able to identify an intestinal infection that had left her gut unable to absorb well, and we opted to treat that infection. We also started supplementing her B12 sublingually. We also got her into physical and occupational therapy so that they could help her learn tools to overcome the struggles that she has due to incidental and environmental gluten exposures. We also got more proactive about further reducing her environmental exposures. Finding healthcare providers that understood how to evaluate her made a tremendous difference in our progress. While she maintains a very conservative gluten free diet, we have seen tremendous improvement for her with far fewer episodes (none of the falling - thank goodness, as that can be such a big problem! and far fewer speech difficulties *KOW*) with her treatment plan that targeted her complications.

Do you believe you have Ataxia, or do you believe you have neurological issues from nutritional deficiencies? What are your symptoms? What makes the symptoms better?


So, I think my DD has ataxia, and I think that nutritional complications (deficiencies created by not uptaking properly, as she was getting plenty in her diet) can severely complicate the ataxia problems. Her symptoms now are much improved. She continues to maintain a conservative gluten free diet, but she has been able to relax a bit now that she is doing so much better. I attribute her improvements to our healthcare team that better understood how to evaluate her biological function with the symptoms that I described, as they were able to identify, treat, and advise on some issues that were complicating her healing progress.
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My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

#10 T.H.

 
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Posted 24 October 2011 - 09:38 AM

Wow - I'm learning so much stuff just reading all the responses! So excited to see so much new information - didn't even think of having both issues at once, although of course that's entirely possible, so I don't know why I didn't!

Makes me want to get a closer look at my daughter's vitamin levels to see what the results were. Her docs were supposed to send me the results, and I'm realizing that it's been 3 weeks now and I still don't have them!

Weluvgators, what was the test that they did to tell whether the B vitamin was being utilized? I'm VERY interested in that one!
  • 1

T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#11 weluvgators

 
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Posted 24 October 2011 - 10:39 AM

The (Company Name Removed - They Spammed This Forum and are Banned) 0091 Organix Comprehensive Profile was used to identify some of her issues (like the B12 dumping, as I understand it), and the (Company Name Removed - They Spammed This Forum and are Banned) 2100 Gastrointestinal Function Profile was used to identify other issues (like the infection). These tests were the ones recommended after our consultations to review medical history and current concerns.
  • 1
My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

#12 weluvgators

 
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Posted 24 October 2011 - 10:42 AM

oops - I had no idea that that lab company was banned . . . hopefully you have enough info there to figure it out or you can email me from my profile page, I guess. I don't think I have PM privileges.

We did not consult directly with that lab, as we went through healthcare providers that use them and other labs based on what their patients need.
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My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

#13 saintmaybe

 
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Posted 24 October 2011 - 10:42 AM

Hey guys, I was reviewing my twitter feed this morning, and the journal Science has an abstract and article in it this month about the neurological mechanisms underlying spatiottemporal navigation. The brain cells that mediate this process are called Purkinje cells. This caught my eye, because William Davis explains in Wheat Belly, these are the exact cells that are damaged in the brain by the gluten induced autoinflammatory response. So you see, there is very real and direct brain damage occurring in Celiac and
GI. We also now have a hypothetical mechanism for how this happens. Unfortunately healing is slow to nonexistent in ataxia cases. Stopping eating gluten stops the autoimmune damage to the brain, but Purkinje cells are not known to regenerate to any great degree.
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#14 weluvgators

 
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Posted 24 October 2011 - 11:05 AM

but Purkinje cells are not known to regenerate to any great degree.


I am curious how Purkinje cells develop and grow in children - any idea? Thanks for the info!
  • 1
My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

#15 AVR1962

 
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Posted 24 October 2011 - 11:10 AM

Hey guys, I was reviewing my twitter feed this morning, and the journal Science has an abstract and article in it this month about the neurological mechanisms underlying spatiottemporal navigation. The brain cells that mediate this process are called Purkinje cells. This caught my eye, because William Davis explains in Wheat Belly, these are the exact cells that are damaged in the brain by the gluten induced autoinflammatory response. So you see, there is very real and direct brain damage occurring in Celiac and
GI. We also now have a hypothetical mechanism for how this happens. Unfortunately healing is slow to nonexistent in ataxia cases. Stopping eating gluten stops the autoimmune damage to the brain, but Purkinje cells are not known to regenerate to any great degree.

I have read articles like this that don't give much hope for a full recovery but I am still pressing forward and feel postive for improvement!!! Interesting though the connection to wheat and damage to nerves.
  • 1
Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.




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