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Gluten Ataxia Vs. Neurological Problems Due To Nutritional Deficiencies


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#16 AVR1962

 
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Posted 24 October 2011 - 11:14 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.



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.

Very interestiong to know that your daughter's tests were showing normal B12 levels when infact they were being dumped, lucky find on that. I have seen several post in this forum where they were describing B12 deficiency symptoms and yet the poster said their tests were fine. I wonder if this is a common problem, and if that is the case I really feel for those who are not getting the treatment they really need.

Glad to hear your daughter's issues were found and resolved. How very frightening for her, you and the family.
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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.

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#17 yolo

 
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Posted 24 October 2011 - 02:26 PM

Just wanted to add that both my boyfriend and I experience ataxia as well as migraines and slurred speech with difficulty finding the right word associated with being cross contaminated with gluten. And yes it very much is like being drunk, but not so fun since its not on purpose.

Both of us have had severe gluten intolerance more than likely since as long as we can remember, since both of us were constantly ill as children, and had chronic neuro and ataxia symptoms to boot. For myself I had occasional visions and the whole nine yards, including losing my amazing athletic balancing abilities I had when I was off gluten the first four years of my life. For Chris as a child and adult he was always experiencing being dizzy as well as migraines and had severe depression and ADHD and excessive sensitive emotions--all of which has disappeared now that he has been off gluten. So take heart! One can improve. I don't think we are so very unusual in this regard.

We both have had ataxia so bad we have gotten so dizzy we have not been able to get up, quite independently of each other. So it very likely is a fact our villi are quite severely compromised. However its also possible that the gluten also attacks our nervous system itself. Certainly it feels like it whether its a direct correlation or downwind of the villi.

I also think my salicylate sensitivity has added to the problem since salicylates for me also attack the villi and in effect the nervous system (its primary area of assault actually--as well as the skin). Now overall I am far less dizzy, whereas in the past it was a daily thing, especially upon standing up from sitting or lying down. I even fainted so badly I broke a couple of teeth and another time severely damaged my foot. So eventually I learned to get up and move slowly. Now however I am noticing overall I don't have to be so careful anymore unless I get glutened.

Just two nights ago both my boyfriend and I got glutened from eating someone's supposedly gluten free dish that actually was baked in a non gluten-free oven (even though on a piece of clean aluminum foil). Last night we were wandering around the tool section at Home Depot hardly able to make a decision and very much like we were drunk. Fortunately today I am much better, though still taking it easy... Whereas Chris has neuro symptoms creeping up his shoulder and neck area and onto his face---even though he went to work anway.

We both hope he does not get a migraine. I already had mine the first night--relieved by initial drinking baking soda in water followed by several doses of a homeopathic headache formula and drinking lots of water, eating plain real yogurt and taking extra acidophilous and nattokinase, none of which he did. I will encourage him to do so next time around.

Plus for him he could take charcoal capsules to absorb the errant gluten, which I cannot given my salicylate sensitivity since its usually made with high salicylates -- coconuts etc. (though I can burn a rice pancake, can't I?? I tried burning some plain rice, however it just got dried out and messed with the pan).

I think one reason docs don't want to deal with ataxia is that it is caused by so many different things it makes their poor heads spin (LOL!). Plus just giving us a magic pill does not work... Thankfully however there are those researchers out there proving what we experience is real and actually has a cause(s).

And further yet, we can heal from this. Believe me, so many here on celiac.com have improved amazingly from this ataxia that its not a secret, except perhaps for some doctors.
  • 2
Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#18 Takala

 
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Posted 24 October 2011 - 05:34 PM

Oh, puh -lease. :blink:


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.




Nonexistent? I don't think so.
Yeah, your hypothetical is right up there with neuro Idjiot #1 who told me I was going to be hopeless and deteriorating around age 26, after calling me a head case, and telling me there was no cause for what was going on in my c- spine, which at the time was getting blamed for the nerve damage. Which they made worse during a test where they cranked my head in a very bad position. They couldn't even get their story straight when confronted with a set of questions from somebody they didn't expect to have any science or logic training. It either has a cause and you don't know it, it has a cause and you will not admit it, or it does not have a cause and is imaginary, or you made a really bad error when you blew off that report and x rays from what was then my primary physician at the time, please select an option. But then go to my mid thirties when the neuro stuff was really starting to show up, and it was the same thing all over again. And again in my mid forties, when I had actual damage show up in my brain.

The only thing that has been consistent is that 1)most neurologists hate dealing with anything they can't explain, and none I've met can explain celiac, and 2) they're even more arrogant than I am on a humble day, and 3) the body always learns to compensate and will heal to a degree thought impossible, if you don't persist in assaulting it with too many glutens and chemicals and unneeded drugs, and do exercise to improve balance and strength, and stick to the diet. There are no shortcuts. Vitamins only help to a certain degree, and cannot make up for eliminating the cause of the auto immune response.
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#19 saintmaybe

 
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Posted 24 October 2011 - 08:17 PM

I am curious how Purkinje cells develop and grow in children - any idea? Thanks for the info!



It seems that Purkinje cells develop prenatally, and continue to generate their elaborate branching patterns after birth and during very young childhood (in humans I would guess 0-1 yrs or even less, but that's just a guess.) They seem to lose their ability to "bounce back" or heal from an injury pretty soon after that, but most of the developmental models have been done on rats and mice, for pretty obvious reasons (much easier to do brain surgery on a mouse than a little kid!).

A lot of the research on human Purkinje cells and children seems to be in the area of autism research. Which is not to scare you. Simply to say that neurologists have noticed a very atypical Purkinje cell appearance in Autistic children, and it has been suggested as one hypothetical cause.

Healing from the ataxias is, I personally think very possible, the younger you are and the earlier you were diagnosed from age of illness onset. The human brain is very 'plastic' or malleable in children, and parts of the brain that were injured can be retrained, or functions can be ascribed to new areas of the brain.

I think you are totally following the right steps by insisting on occupational therapy for your child. You may also want to look into safe supplementation with vitamins and minerals that are age appropriate for a child. I was struck by one neurologist's quote- fundamentally damage to the Purkinje cells results in dopamine dysfunction at the cell signaling level.

In which case, I would pursue supplements like fish oil (increases neuronal permeability), magnesium (cofactor for dopamine manufacture), folic acid, iron (another cofactor), B vitamins- B6 and B12, and also 5-hydroxytryptophan. The last is a precursor to dopamine.

Remember, not all the Purkinje cells can be gone, except maybe in an end stage celiac brain. That would probably look from the outside very much like Alzheimer's, MS, maybe Parkinson's or one of the other dementias (why ataxia seems to get worse and worse as you get older- it's cumulative damage).That is absolutely catastrophic and fatal. My supposition of why ataxic healing is so slow, is that we are training our Purkinje cells to do more with fewer helpers.
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#20 yolo

 
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Posted 24 October 2011 - 08:48 PM

It seems that Purkinje cells develop prenatally, and continue to generate their elaborate branching patterns after birth and during very young childhood (in humans I would guess 0-1 yrs or even less, but that's just a guess.) They seem to lose their ability to "bounce back" or heal from an injury pretty soon after that, but most of the developmental models have been done on rats and mice, for pretty obvious reasons (much easier to do brain surgery on a mouse than a little kid!).

A lot of the research on human Purkinje cells and children seems to be in the area of autism research. Which is not to scare you. Simply to say that neurologists have noticed a very atypical Purkinje cell appearance in Autistic children, and it has been suggested as one hypothetical cause.

Healing from the ataxias is, I personally think very possible, the younger you are and the earlier you were diagnosed from age of illness onset. The human brain is very 'plastic' or malleable in children, and parts of the brain that were injured can be retrained, or functions can be ascribed to new areas of the brain.

I think you are totally following the right steps by insisting on occupational therapy for your child. You may also want to look into safe supplementation with vitamins and minerals that are age appropriate for a child. I was struck by one neurologist's quote- fundamentally damage to the Purkinje cells results in dopamine dysfunction at the cell signaling level.

In which case, I would pursue supplements like fish oil (increases neuronal permeability), magnesium (cofactor for dopamine manufacture), folic acid, iron (another cofactor), B vitamins- B6 and B12, and also 5-hydroxytryptophan. The last is a precursor to dopamine.

Remember, not all the Purkinje cells can be gone, except maybe in an end stage celiac brain. That would probably look from the outside very much like Alzheimer's, MS, maybe Parkinson's or one of the other dementias (why ataxia seems to get worse and worse as you get older- it's cumulative damage).That is absolutely catastrophic and fatal. My supposition of why ataxic healing is so slow, is that we are training our Purkinje cells to do more with fewer helpers.



Thank you Riss for your informed reply. I do think however given my own experience and that of others that one can and does heal even if one is a lot older--although I agree, it is common sense that the younger one addresses these issues, the easier its got to be.

Nevertheless, in counterpoint, my boyfriend is a good example. I could say for myself, yes for years I have been taking very good supplements, including fish oil. However my bf's supplements were questionable at best though he did take the basic B vitamins and exercised like crazy since it made him feel better.

Meanwhile though there is other research that shows that even oldsters can actually keep on producing fresh brain cells if they keep using their minds. Just like in muscle, with the brain's neurons, use it or lose it.

The old myth that it is all a downhill slide since age 25 is just exactly that, a myth. As well as a cultural tendency many have to start sliding mentally after they leave school--and start abusing their bodies which in turn adversely affects the brain.

I also hear that after age 28 we stop producing so many enzymes--so taking enzymes thereafter seems to be a very good idea to help heal and keep one young, brain wise as well as in every other aspect of our health--in addition to the supplements you mentioned, and again, lots of exercize.
  • 1
Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#21 AVR1962

 
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Posted 25 October 2011 - 01:09 AM

The last couple posts pose some very interesting thoughts especially if gender and age make a difference. It seems, from what I have read of other posts here that there may be that connection.
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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.

#22 dilettantesteph

 
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Posted 25 October 2011 - 03:42 AM

It seems that Purkinje cells develop prenatally, ...

Can you please give some references for this Purkinje cell information? I see now that you mentioned Science this month, but could you please post the actual reference. It makes it easier to find. Thank you.
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#23 saintmaybe

 
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Posted 25 October 2011 - 05:13 PM

Can you please give some references for this Purkinje cell information? I see now that you mentioned Science this month, but could you please post the actual reference. It makes it easier to find. Thank you.



Sure!

That specific article is

Cerebellum Shapes Hippocampal Spatial Code
Science 21 October 2011:
Vol. 334 no. 6054 pp. 385-389
DOI: 10.1126/science.1207403

By C Rochefort, A Arabo, M Andre, B Poucet, and L Rondi-Reig.

There's a bunch of Purkinje cell references in the Science classic archive if you just search Purkinje, but I don't have access to those papers. Also Wikipedia has a decent overview, and Google Scholar will get you some abstracts that I browsed to get the Autism information, although I didn't necessarily quote a specific study there.

The book I quote is Wheat Belly, by William Davis, specifically the chapter on neural affects of gluten and ataxias. He has sixteen pages of mostly medical references- Six specifically reference gluten ataxia, although I will admit I haven't read those yet. They're mostly found in Brain, the Journal of Neurological/ Neurosurgial Psychiatry, and Neurology. If you want these, let me know and I'll see if I can hunt down the links.
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#24 dilettantesteph

 
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Posted 26 October 2011 - 03:39 AM

Thank you. Here's the link in case anyone is interested. http://www.sciencema...54/385.abstract
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