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hk1

Vestibular Ataxia, Gluten Intolerance?

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About 50 days ago (on Nov 10) I started having problems with feeling dizzy, off balance, and vertiginous. I went to see an Ear Nose and Throat doctor who told me he thought I had migraine associated vertigo. I agreed with his diagnosis at the time but since then I've started to wonder.

I don't have any of the "normal" gut problems generally associated with celiac disease, at least I don't think I do. No diarrhea or lose stools, no indigestion, no constipation, etc.

What I do have is what I've seen referred to as "vestibular ataxia". Let me explain a little further.

On more than one occasion I've had these "attacks" where I get very anxious, have increased heart rate, I feel sort of dizzy, usually lose appetite, I get a feeling of a lump in my throat, feel weak and sort of confused (brain fog), and I get tight muscles in the upper back/shoulders/neck area. Often the tight muscles will come first and then all the other symptoms kind of hit like an attack, with most of the symptoms lasting for hours or days, although they will be at their very worst during the "attack" phase.

After these attacks I'll be very off balance and semi-dizzy for days. In fact, ever since this has started I haven't ever been relieved of the off balance feeling. But I think it might be because I was ignorantly ingesting gluten every two or three days, if not every day.

Throughout this time, two other symptoms have been very prevalent, anxiety and insomnia. The anxiety could certainly be something I brought on due to feeling dizzy and vertiginous but it did seem like I was a lot closer to the brink of anxiety than what I normally am. Yes, I've suffered some anxiety before but was never diagnosed with an anxiety disorder. I don't think I ever had as much problem with anxiety as I did throughout this dizzy problem.

The insomnia actually didn't start when the dizziness first started. I think it was about 1-1/2 or 2 weeks later when I started having insomnia. It correlates roughly with the same time that I went off caffeine and the same time that I started drinking magnesium citrate and ended up having a 36 hour diarrhea episode (magnesium citrate will do that to you). It seems like my anxiety sort of hit an all time high during that episode, perhaps because of the lack of sleep, and then things just went from bad to worse. At first I was waking up at about 3:30 and couldn't go back to sleep. Then I started waking up at 1:30 and 2:00 and there were a few nights where I basically didn't sleep at all. I'm not convinced that this insomnia is/was part of my symptoms as much as a result of the tremendous anxiety that I endured/allowed. Also, I started taking all kinds of vitamin and mineral supplements along with some herbal supplements and I think that something I was taking (or some combination) was maybe making my anxiety and insomnia worse rather than better. I went off almost everything and it improved a lot but I also started on Remeron (an anti-depressant and anti-anxiety med that makes you sleep) about the same time.

Also, throughout this whole episode I also seemed to be running on an almost unlimited supply of energy which has only recently normalized. Once again I think this could have been a result of the severe anxiety coupled with all that stuff I was tossing down my throat every day. I suspect my cortisol levels were through the roof or else I sped my thyroid up or something.

I know for sure that one of my "attacks" happened while I was snacking on some rye pretzels (95% refined wheat flour). I was pretty sure the pretzels had caused the problem but I couldn't for the life of me figure out which ingredient was the problem. I sure didn't think it was the wheat flour or the rye flour.

I guess I'm just wondering if anyone else is familiar with the neurological version of gluten intolerance sometimes called gluten ataxia. What are/were your symptoms? Did all your symptoms go away when you started on the gluten-free diet and how long did it take for the symptoms to disappear?

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Hi, HK1,

Two years ago, the world started tilting in my head and I couldnt walk without tilting over to one side or the other. The vertigo would always be there, sometimes more intensely than other times. Sounds were unbearable and as everything further progressed, I couldn't be under flourescent lights without having a seizure like episode in which my head whipped back and forth and my torso rocked in circles.

All of it was accompanied by increasing exhaustion, fogginess and slurring my words.

In the summer, after seeing many, many specialists, I decided to try going off gluten as it has been diagnosed within my family. Within weeks, my energy was back, the vertigo/off balance feeling was diminished. I actually started to walk again without keep my eyes on the ground to help me navigate. I still had seizure like episode under flourescent lights. Perhaps that's something that will take longer to resolve.

At the beginning of November I went back on gluten in order to be tested for celiac. Haha! Within days, I had vertigo, off balance, head nodding accompanied by gas and bloating. Tired again, feeling like I had never slept when I was finally able to go to sleep. Getting to sleep was hard.

I've just had the blood test and am now off the gluten for three days. Vertigo was bad yesterday but I had energy. I'm expecting it to take a couple of weeks for the vertigo to abate.

Hope this helps and I understand what you're going through.

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I have been diagnosed with ataxia . Most of my symptoms dissipated after going gluten free. Unfortunately some of the damage is most likely permanent .

My symptoms when I consume soy also are neurological.So I am also soy free.

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I had ataxia for years and had progressed to the point where they thought I had MS and would be in a wheelchair soon.

I also had DH since childhood and after my children were born developed the more typical GI symptoms along with daily migraines, some with the headache but mostly with the auras.

Being gluten free has pretty much done away with the ataxia even though I was very far advanced. It does take a long time, in my case years, to heal fully. In some cases some damage to the nervous system may be permanent as is the case with a couple of my issues but now that I don't feel like I am walking on a boat in a high sea I can deal with lag time on my right side and my crooked smile.

One of the things that can be found in testing for ataxia is what are called UBOs or unidentified bright objects on a brain MRI. They are similiar to the lesions found in MS but are not in the same location. If your doctor is willing to do an MRI the lesions are diagnostic of gluten ataxia. Do be aware that not all neurologists are aware of this. Mine told me they were meaningless when the following spinal tap didn't show any of the debris shown with MS.

You should request a celiac panel but the false negative rates are high especially in those that have primarily brain impact. You do need to be still eating gluten for any of the blood work to have any chance of being accurate.

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I've experienced many of your symptoms from gluten. Once I was completely gluten-free I found that soy was also causing migraines/ataxia.

If you're still eating gluten you can ask your Dr to run a full Celiac blood panel. You have to be eating it regularly for the test to be accurate. Be aware though, that some people test negative but still have gluten intollerance or Celiac disease. Once the testing is done..go gluten-free for 3 months and see how you feel?

If you are already gluten-free..stay with it and eliminate every trace!

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I'm so sorry to hear you feel this way. It sounds like cutting gluten out right away might be the best thing to do. If you are feeling this awful and its debilitating you I think going gluten free asap is worth it. Who knows how long it will take to get rid of the symptoms but as the gluten gets out of your system I would imagine you would start to feel better. Which I think you could possibly see a change in as little as a few days. Also if you haven't gone to a neurologist or GI since this episode you should go right away. I would consider going to the GI first sense you suspect this is related to gluten. I wasted a lot of time with internist and neurologist when all I need was to see a GI.

I never thought about the neurological affects of gluten but this has now shed some light on what I have experienced 2 years ago leading up to my gluten free diet. I have experienced a milder version of what you described... I'd say about two years ago and I was under the impression is was due to my b12 deficiency. Once my b12 got back up I felt a lot better and my migraines were less intense but I still got them. It wasn't until I went gluten free in October of 2011 did I see my migraines, headaches and just body aches go away. But I haven't been medically diagnosed with celiac everything keeps coming back negative but obviously being gluten free is making me feel better. I'm not 100% gluten free I probably still accidently ingest gluten through cross contamination, chap stick, and any other form I might not be aware of but as long as I don't eat real pasta, bread, or soemthing I feel fine. I even accidently drank a tea that wasn't gluten free( malted barely) and it didn't seem to affect me.

I hope this helps because reading your post has helped me. It has made me aware of the neurological aspect. Also I truly wish you the best I hope you get better soon!

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I don

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