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Gluten Ataxia Vs. Neurological Problems Due To Nutritional Deficiencies


T.H.

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T.H. Community Regular

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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ravenwoodglass Mentor

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:

Open Original Shared Link

"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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pondy Contributor

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.

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sreese68 Enthusiast

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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dilettantesteph Collaborator

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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eatmeat4good Enthusiast

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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AVR1962 Collaborator

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.

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AVR1962 Collaborator

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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weluvgators Explorer

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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T.H. Community Regular

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!

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weluvgators Explorer

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.

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weluvgators Explorer

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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saintmaybe Collaborator

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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weluvgators Explorer

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!

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AVR1962 Collaborator

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.

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AVR1962 Collaborator

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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YoloGx Rookie

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.

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Takala Enthusiast

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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saintmaybe Collaborator

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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YoloGx Rookie

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.

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AVR1962 Collaborator

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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dilettantesteph Collaborator

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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saintmaybe Collaborator

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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dilettantesteph Collaborator

Thank you. Here's the link in case anyone is interested. Open Original Shared Link

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  • 5 years later...
boringandsafe Newbie

Does anyone have information about getting help for my three year old daughter. Currently I have a non HMO practice that can help. Looking for one that will be covered under insurance. It seems nobody I call even knows what gluten ataxia is let alone where to point me for my daughter to have the physical therapist and a doctor to help with how to guide me besides diet. The above mentioned comments on a gluten free oven. That was not even something I considered. At a restaurant we worked in we ran items through the same oven. Seriously hoping we didn't make that person sick although nothing else was used that was the same. All different utensils. I don't want to make my daughter worse. Can someone help?

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    5. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.


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    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
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