Gluten Ataxia - What's Your Experience?

[T.H.]

It's a question I've wondered for a while: what is the gluten 'threshold' for neurological problems? And is it the same as the gluten threshold for our gut problems? Or in other words, if we've finally found a gluten free diet that is working well enough to heal our villi, will that heal our neurological issues as well?

I finally found just a snippet of a study that suggests possibly not.

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There were two pieces of information that I thought were of most interest:

The neuropathological finding of loss of Purkinje cells in patients with gluten ataxia leads us to believe that intervention would probably result in stabilisation rather than improvement of the ataxia. That this was not the case and that ataxia improved in the treatment group is somewhat surpris- ing. The improvement occurred irrespective of the duration of the ataxia, though some patients with a shorter duration of ataxia returned to normality. The results suggest that before the loss of Purkinje cells, there is a reversible process, perhaps related to active inflammation causing cerebellar dysfunction.

"Both gastroenterologists and neurologists need to be aware of the spectrum of gluten sensitivity with its many diverse manifestations.18 The erroneous belief that gluten sensitivity is exclusively a disease of the gut is detrimental to those patients presenting with neurological manifestations, as the absence of symptoms or histological evidence of enteropathy sometimes prevents them from receiving treatment with a gluten-free diet. One may argue that there is no longer a need for a small bowel biopsy in patients presenting with gluten ataxia or der- matitis herpetiformis, given that a gluten-free diet should be recommended irrespective of the state of the gut."

Most neurologists I've heard from say that the gluten induced neurological damage is almost always permanent, but this study seems to suggest a possibility that only some of the damage is. And it seems assumed as a given by many doctors - and many of us - that if our guts have healed, then whatever neurological symptoms are left can't be due to gluten ingestion. And again, this seems to suggest that gut health is not necessarily a good measurement of our neurological health.

Has anyone seen any other studies of gluten ataxia that had similar findings? Or that completely contradicted this one? I'd really like to know more about this aspect of the disease, honestly, and the doctors I speak to don't seem to have a clue.

All I know is that so far, with a gluten free diet that's lower than what seems to be needed for my gut health, my neurological symptoms go away. Does anyone else have this experience? Or are there some here with gluten ataxia who have the opposite? They get gut symptoms on lower levels of gluten than it takes to set off their ataxia symptoms?

Anyone's experiences would be really appreciated, if you'd care to share them!

[YoloGx]

Hi Shauna,

I don't think I have gluten ataxia, however I have had a host of neurological complaints that largely have resolved by going off gluten. If however I get cc'd by very trace amounts, my nervous system including my head knows it first. I get body aches and pains too, become less coordinated, have difficulty thinking of the right word, memory problems, irritable, tired, painful eyes etc. (headaches and painful nasal congestion as well as painful occiput and lymph nodes in my back as well as hands and feet, leg thrashing at night etc.). In the good old bad old days I did have some trouble walking, I would get the shakes so bad--so maybe it has approached ataxia. Before I was off gluten I also occasionally would see and hear people who weren't there.

My boyfriend (who used to have migraines, chronic insomnia and ADHD--which resolved by going off gluten) has similar difficulties from getting CC'd. So no more shared microwave use for one. And wash hands after most everything before touching hands to face or eating or drinking.

Recently I have been finding homeopathics help resolve some of these issues. Might be worth looking into for others too. In order to work however you have to be off all caffeine, any mint products and possibly some other strong herbs. Seems worth it to me.

As mentioned elsewhere, I also stay off the salicylates as much as possible--which of course complicates the picture since they too affect the neuro system. The more I stay off gluten and medium to heavy salicylates, the more coherent, calm and competent I feel.

The thing with gluten though is that staying away from trace amounts requires constant vigilance and observation establishing new habits so I won't inadvertently gluten myself from some stray doorknob etc. Unfortunately there is a learning curve with pain as the teacher.

This again is where the homeopathics are proving their weight in gold. Thank heavens I can tolerate a small bit of lactose these days... I just got a headache formula from Hylands which worked amazingly well. I took it soon after I realized what was going on since there is a recognizable descent so to speak down into the painful "gray zone".

Bea

[pricklypear1971]

I really dont have gut symptoms (unless I develop them now, which would truly suck, but that seems to be par for the course around here).

I do probably have absorption issues... But thats hard to gauge.

I do have what is apparently DH, and since I've been on a low iodine diet I've had very good luck keeping it in remission.

I appear to be chemical-sensitive - shopping malls, cleaning agents, scents, and food additives inflame my DH when there's an opportunity (iodine), and bring neurological "flashbacks" so to speak. That "Jeffried" feeling. My hands shake more. I've noticed as my DH heals and I haven't had an outbreak that my hands are increasingly steadier.

I think there's an inflammation link to the hand shaking - I literally feel like my skin is shrinking back down onto my body. My fingers seem smaller (rings falling off), I look different and clothes fit better. I don't think it's just weight.

My brain is much better off gluten, and when my DH is in remission. Then again, I'm finally off the antihistimines / antidepressant (was prescribed as a strong antihistamine for my "rash") and that makes my brain clearer - it was like a fuzzy blanket.

I know I've read a few things about ataxia and healing but nothing suggestive of the tolerable gluten level needed to achieve recovery or remission. I think at least one person here is in physical rehab, including ataxia issues and it's helping. I plan on getting back to the gym and working with a trainer soon. I think I'm ready. I think the more active I am, the better I feel and fewer symptoms are noticeable.

I imagine our brains and nerves can rewire to a degree to recover but am betting in addition to the individual ability to recover, we need specific therapies to encourage that type of growth.

[YoloGx]

I agree--use it or lose it! Keeping active physically and mentally may actually help us not only heal, but perhaps gain back our neuro net compared to many since really there are too many couch potatoes out there...

I am going on long walks every day now and I notice a huge difference. I had to stop after being glutened in August from the above mentioned microwave in a hotel room--and was ill for 5 weeks. Sheesh!

Like I said, I have been reacting to very trace amounts when out and about, socializing, or like today not thinking and touching my finger to my tongue to deal with a scratch that bled. Thus the beginning of a migraine a few hours later. But success with using the headache homeopathic remedy.

I am also starting back in with meditating and some yoga plus using small weights and am planning to get back into my creative endeavors very soon.

For me, these are all measures of health--being more fully myself.

Hurrah for us all, eh? No quitters here.

Bea

[AVR1962]

I just got a headache formula from Hylands which worked amazingly well.

Bea, could you share the name of the headache formula?

[AVR1962]

I hope the study is correct, I have not read that it was reversable. I do have ataxia issues so this gives me hope! I went to a low acidic diet which goes along with a diet without salicylates not only to help heal my system but in hopes to that it might help promote bone growth as I have lost in both spine and legs and a low acidic diet is supposed to be helpful for this. I have found after being off the salicylates I have felt a world better. I am having problems with malabsorbtion but it's getting better by being consistant with my diet and supplements. I have found that alcohol makes the ataxia worse, it also falls under the category of salicylates.

Thanks for posting the article, it makes me feel thre may actually be a light at the end of this tunnel!

[ravenwoodglass]

I can only answer for myself but I had severe ataxia that had been progressing since my late childhood. Doctors thought my odd gait was due to leg and foot deformities but they got worse instead of better after my surgeries. They did send me to PT and Mom also made sure I got ballet lessons and I did yoga all of which helped for a bit but the ataxia was still there. By the time I was diagnosed in my midforties it was severe and I needed canes or walls or a shopping cart to walk and dragged one leg. Within 6 months on the diet I was very much improved and could walk unaided though my balance was still a bit off. Within a couple of years strictly gluten free my ataxia was pretty much gone and only appeared when glutened. After a couple more years and some more PT I now have very little issues even when glutened. I would be really curious if the lesions in my brain are still there but have never had a followup MRI. I did have to be super strict including avoiding distilled gluten which doesn't effect most celiacs.

[YoloGx]

Bea, could you share the name of the headache formula?

Most certainly: its " Hylands: Headache" -- Natural Relief for Headaches Due to Stress or Illness. What is in it is: Iris versicolor 3x, hpus; Gelsemium Sempervirens 3x, hpus; ipecac 3x, hpus; belladonna 6x, hpus; in a base of lactose, usp.

The good news is that by taking them I completely avoided any headache symptoms thus far after the initial crunch which alerted me last night to get a remedy. I took 3 doses. Am glad I found this Hyland's formula at the store. My boyfriend and I have used both the homeopathics belladonna and pulsatilla by themselves (separately) and both remedies have helped lessen our symptoms considerably. This new remedy combination however seems to be superior. Am thinking of carrying a bottle around just in case of similar emergencies. Plus there are remedies that seems geared to plain old gluten sensitivity too that I mean to track down.

A friend from the salicylate sensitivity world suggested I just use some homeopathic lactose pills and put them in a small bottle with spring water and percuss them 100 times or so. One can safely store them in the fridge for a month (while using of course). I haven't done that since it seems I can tolerate the lactose pills. But it is an alternative if one is severely lactose intolerant. It also would help save some money.

I believe there are instructions on E-How on the Internet on how to make one's own homeopathics. I also have been told several times that there are glycerin homeopathics out there. I believe one has to order them however since I have not seen them in the stores.

Again--no caffeine and no mint, not even in toothpaste. Plus avoid other heavy duty herbs and spices to help the homeopathics work more efficiently. You have to take them at least 15 minutes away from putting anything else in your mouth, both before and after your dose.

[JoshB]

I've asked this myself. Everything I've read says that neuro issues that come from actual damage don't usually get much better.

Stress and pain, however, do have a major effect on your nerves. Also, there are some common vitamin deficiencies that can do horrible things to the chemical transmitters your nerves use to send messages. Fatigue, of course, has an enormous effect on our mental sharpness. All of that should correct itself as you get better. So, I guess it depends on you and your situation.

[YoloGx]

I can only answer for myself but I had severe ataxia that had been progressing since my late childhood. Doctors thought my odd gait was due to leg and foot deformities but they got worse instead of better after my surgeries. They did send me to PT and Mom also made sure I got ballet lessons and I did yoga all of which helped for a bit but the ataxia was still there. By the time I was diagnosed in my midforties it was severe and I needed canes or walls or a shopping cart to walk and dragged one leg. Within 6 months on the diet I was very much improved and could walk unaided though my balance was still a bit off. Within a couple of years strictly gluten free my ataxia was pretty much gone and only appeared when glutened. After a couple more years and some more PT I now have very little issues even when glutened. I would be really curious if the lesions in my brain are still there but have never had a followup MRI. I did have to be super strict including avoiding distilled gluten which doesn't effect most celiacs.

Ravenwoodglass, You are such a brave woman. You have survived so much! And come out on top after it all.

It reminds me of what could have happened to me. Maybe I was "lucky" to have my kidney come under attack from gluten as a young adult. Not too many years later I figured out I was "allergic" to the wheat family. Ha! Nevertheless it helped improve my situation.

But like you I did have an irregular gait often times as a child and young adult. Plus my balance which used to be extraordinary as a small child went out the window. I have chalked it up to a bad injury I had at age six. However it could also have been worsened by this ataxia. I was off all gluten until sometime during age 4 when I had the memorable moment of being allowed to eat shredded wheat. At that time I was extraordinarily active -- I used to balance walk on top of the of the fence planks for instance. Later I couldn't even skate, my balance was so bad.

Even now I am very off kilter in the mornings. I am so used to it I don't think about it too much. However in the morning I just don't have the coordination it takes to do simple things like feed the cats. I am working on it but there it is.

My boyfriend says he was also uncoordinated with a bad sense of balance until fairly recently and now on diet all that is going away.

[ravenwoodglass]

I've asked this myself. Everything I've read says that neuro issues that come from actual damage don't usually get much better.

Stress and pain, however, do have a major effect on your nerves. Also, there are some common vitamin deficiencies that can do horrible things to the chemical transmitters your nerves use to send messages. Fatigue, of course, has an enormous effect on our mental sharpness. All of that should correct itself as you get better. So, I guess it depends on you and your situation.

The research into gluten ataxia is not extensive. That is one reason why I would like to have another MRI to see if the lesions, I had 5, are still present. The lesions are called UBOs or unidentified bright objects and are very similiar to the lesions found in MS but not in the same place. Those lesions are diagnostic of celiac that has attacked the brain but my neuro was unaware of that. I also had severe aphasia that has resolved completely. They do know that the brain can be 'rewired' so that different undamaged areas can 'take over' from the ones that are damaged. Without another MRI there would be no way to know if that was what happened or if the lesions went away.

It was not stress or vitamin deficiencies that caused my ataxia it was celiac antibodies attacking the brain. It did take many years to resolve completely and I have to wonder how long they followed gluten ataxic patients before they decided that the brain damage was not reversable.

[JoshB]

That is a good point. There's a lot of areas where the current scientific answer is "We followed for two years and this is what we saw", but the real answer is "In the long run, who knows?"

For many questions we'll never have an answer, just because finding that answer would be incredibly cruel or expensive. About the only reason we know of so many risk increases is because of the Korean War study where they were able to look at frozen blood samples from forty years ago and determine who had celiac disease at the time and what happened to them over the following decades. How else would you do long term studies? You can't exactly figure out that someone has celiac disease and not tell them just so you can see how it progresses. And it's hard to pay for studies on symptom improvement.

[ravenwoodglass]

That is a good point. There's a lot of areas where the current scientific answer is "We followed for two years and this is what we saw", but the real answer is "In the long run, who knows?"

For many questions we'll never have an answer, just because finding that answer would be incredibly cruel or expensive. About the only reason we know of so many risk increases is because of the Korean War study where they were able to look at frozen blood samples from forty years ago and determine who had celiac disease at the time and what happened to them over the following decades. How else would you do long term studies? You can't exactly figure out that someone has celiac disease and not tell them just so you can see how it progresses. And it's hard to pay for studies on symptom improvement.

Yea, if they had only followed me for 2 years they would have said it was permanent as it was about 6 or 7 years before I recovered completely although I was able to walk unaided after a few months. That includes my cognitive function as well as stuff like walking and talking. As far as seeing how it progresses they should talk to the folks like myself that had gone undiagnosed for over 40 years. I think my sig says a lot about how the progression of the disease can impact a person. 6 months before I was diagnosed my DD told me the family would understand if I committed suicide. My children never knew me well until they were adults. We still have so much to learn about celiac and all it's manifestations.

[eatmeat4good]

I bumped into walls and fell down.

I walked uncoordinatedly and so did my son.

I was scared to death the neurological symptoms would be permanent.

Unbelievably relieved and happy that we both walk normally now.

Even when glutened...it is the depression and anxiety that show up first, headache second, nausea, D but I have not yet had an incident of glutening where I experienced stumbling or falling or uncoordinated gait.

I don't really know if we had gluten ataxia? That's what we call it when we refer to the Zombie days. It may also have been due to muscle weakness and malnutrition. Whatever it was...it went away completely for both of us. We are one year gluten-free

[AVR1962]

Most certainly: its " Hylands: Headache" -- Natural Relief for Headaches Due to Stress or Illness. What is in it is: Iris versicolor 3x, hpus; Gelsemium Sempervirens 3x, hpus; ipecac 3x, hpus; belladonna 6x, hpus; in a base of lactose, usp.

Thanks Bea! Doing lots better here!!

[YoloGx]

Thanks Bea! Doing lots better here!!

Glad to hear that! You go girl!

----Bea