Tinnitus And Balance Problems/mild Vertigo

[Pegleg84]

Hi

This may or may not be linked to my celiac, but I have had tinnitus in 1 ear for over six months, and an increased feeling of unsteadiness (mild vertigo, like being on a boat). I've had some sinus problems as well, probably city-induced allergies, that I've mostly dealth with and still the dizziness.

I'm looking into the causes of this (inner ear issue, possibly a form of Meniere's?), but am wondering if anyone else with celiac has also had similar problems? (or, if you have any advice, even if it's not

I have been sticking to the gluten-free diet for over 2 years and most of my symptoms have gotten better.

I currently have low iron, though (not anemic, but bad enough to need supplements), which may be causing some of the dizziness, and could be due to trace gluten a little too often.

I've done a little research, and hear that a low-sodium diet can help with balance problems (regulate fluid in the inner ear). Anyone have experience/advice on eating a gluten-free and low-sodium diet?

Any help/advice/etc would be great.

Thanks a lot!

Peg

[blueshabooMoon]

Hi

This may or may not be linked to my celiac, but I have had tinnitus in 1 ear for over six months, and an increased feeling of unsteadiness (mild vertigo, like being on a boat). I've had some sinus problems as well, probably city-induced allergies, that I've mostly dealth with and still the dizziness.

I'm looking into the causes of this (inner ear issue, possibly a form of Meniere's?), but am wondering if anyone else with celiac has also had similar problems? (or, if you have any advice, even if it's not

I have been sticking to the gluten-free diet for over 2 years and most of my symptoms have gotten better.

I currently have low iron, though (not anemic, but bad enough to need supplements), which may be causing some of the dizziness, and could be due to trace gluten a little too often.

I've done a little research, and hear that a low-sodium diet can help with balance problems (regulate fluid in the inner ear). Anyone have experience/advice on eating a gluten-free and low-sodium diet?

Any help/advice/etc would be great.

Thanks a lot!

Peg

Hi Peg, you found the right place, I have conversed with some of most genuine kindest people on the planet here. The ear thing is common symptom and so is vertigo also balance issues with celiac are called Ataxia, google it and see if fits what you are experiencing. I too am suffering being off balance, unsteady gait when walking, very frightening. I posted similiar post if you click on my profile then click topics you can read what experience celiac community has responded back to me. Hang in there. Doctors know less than you will about celiac and you have to be own advocate, research and learn all you can. Terri

[Bubba's Mom]

I've noticed I get the dizziness/ataxia symptom if I get a low dose of gluten. I never had it before going gluten free, but have gotten more sensitive to gluten since going gluten-free.

Check for any low dose you might be exposed to, including getting cc from others around you.

I found I can't handle dog biscuits, and going barefot in a household with others that eat gluten, along with gluten eating dogs, is a problem, as is contact with their "kisses".

Check your shampoo, sunscreen, toothpaste, seasonings, for gluten ingredients, and be aware that frequent hand washing is advised as a way to prevent contact with traces of gluten from touching things that gluten eaters are touching.

You could also have a second sensitivity? Keep a log of what you're eating and see if you can find an ingredient that's causing your symptoms.

I recently went to my GI and told her about my ataxia/migraines from cc. She wrote it down. That being a symptom of being glutened was news to her!

Unfortunately, we have to be a bit of a detedtive with these problems. I understand how awful this makes you feel!

I hope you can find your answers quickly. Good luck!

[T.H.]

I couldn't have salt for a while without getting sick, and no processed food, but my dizziness didn't resolve for me, at least, until I went super, super gluten free. Even tiny bits of contamination make the vertigo recur within minutes, and then it slowly dissipates over a few hours to a couple weeks, depending on how bad it was.

I think it took a few weeks/ couple months for it to completely disappear, when I first figured it out. It was one of those things where I was so used to being super, super careful about moving too quickly that I only realized it was completely gone when I stumbled one day. Braced myself for the vertigo to hit, and it never did, and I realized I hadn't felt it in quite a qhile.

There's a super-sensitive celiac group further down on the forums here, if you want to check it out and give it a shot. Usually just involved a lot of care in cooking, more care in sourcing ingredients, and lots and lots of cooking. :-)

As a cooking challenged person, I will say: it's still worth it. If this happens to be what you have.

And just for a comparison diet, to see the type of cc level that got me? For nearly a year, I was eating ground buffalo meat, salt, avocado, avocado oil, carrots, amaranth, quinoa, and sweet potato, plus or minus a couple veggies, fruit, or nuts. And with this diet, in a gluten-free household? I was still getting contaminated with gluten enough to make me have vertigo.

[Pegleg84]

Thanks everyone for the input.

I just looked up Ataxia, and I don't think that's what I've got (unless its the very early stages). My coordination is fine, just my balance is off a little due to the vertigo.

However, I do feel that something in my diet is making the vertigo worse. (for example, I'm just eating lunch, which is leftover biryani from a restaurant, and am feeling rather unsteady right now). It could be a combination of several things: trace gluten, too much sodium or refined sugar (I can't eat preservatives well either! all this natural/organic has ruined me), my denial of probably becoming lactose intolerant, and maybe even some trouble processing fats.

Also, humidity, stress, tiredness, etc affects it as well.

I will take a look at the super-sensitive forum, because I do need to be more careful.

I do think my problem is more likely to be Meniere's than this Ataxia thing, but who knows.

I'm the kind of person that can put up with a little discomfort, but I'd rather know what's causing it.

Any additional info/advice would be great

Thanks!

Peggy

[Austin Guy]

I developed a fear, almost a paranoia, of heights about 3 years ago. I was at a park looking over a cliff at rock climbers and got such vertigo that I almost fell down. That was very strange because I used to rock climb, climb trees and skydive. The problem got worse over the next few years and I didn't even want to go up in a building.

After going gluten free that sensation and resulting fear is gone. Amazing!

[Reba32]

I have had continuous vertigo and tinnitus for several months now. Well, the tinnitus I've had since high school (AC/DC and Black Sabbath concerts are very loud!), but it started really screaming last fall, and with the louder tinnitus came the constant vertigo. It never stops, standing, walking, sitting, lying down, doesn't matter. My brain is always spinning and my ears are always screaming.

So far I've been to 2 doctors and they have no clue (I posted a thread about a month ago, there are a few suggestions in it). I'm still waiting for an appointment with the more special specialist. Meniere's has been ruled out, as was any infection. The ENT just kind of shook his head and said I'm special, the only thing he could find was *very* minor hearing loss in my right ear. I think it might actually be neurological. My brain feels lopsided most of the time, it's weird.

I have no suggestions for you as to cause or dx, but I've seen quite a lot of threads and questions from other people with similar symptoms (tinnitus and vertigo being the symptom, not the disease itself)

[rustycat]

I found that my tinnitus was related to a salicylate sensitivity. It's a deficiency in how my body handles salicylates (and other phenols, too), which are very high in fruits, spices, herbs and some vegetables. There's a great information site if you Google "Salicylate Sensitivity". There seems to be a connection for some celiacs.

Peggy, I thought about it because you mentioned you felt worse after eating biryani - does it have a lot of spices?

Going gluten free helped me somewhat, but I knew that there had to be something else because I still had issues with rosacea and tinnitus. I've also had vertigo a few times. A rosacea site led me to the salicylate issue and my rosacea is much diminished now. My tinnitus is directly correlated with salicylates, I have found. It may be something to look into.

I hope you find a solution.

[JH85]

From reading the symptoms of Ataxia it seems like I may suffer from Ataxia as well. The reason this topic caught my eye is that I am an avid golfer, sometimes 4 times or more a week. As of late I'd say about the past two months I have been playing worse than normal This due to the fact on the most even of lies I swing at my normal speed, stance everything, but I have been falling out of my stance on my follow through. Or in some cases, I take extremely deep divots out of the fairway because I'm either falling towards the ball or away from it. Really strange because I have NEVER had this feeling. Went to the pro at my club and he couldn't find a dang thing wrong with my stance set up or swing speed. Drives me insane!!! I'm by no means a Scratch golfer My handicap before this started was a solid 12.... since.... a recreational golfers 18-20+ absolutely in excusable in my book lol........... anywho Anyone out there think this may be related??

[GFinDC]

Hi

This may or may not be linked to my celiac, but I have had tinnitus in 1 ear for over six months, and an increased feeling of unsteadiness (mild vertigo, like being on a boat). I've had some sinus problems as well, probably city-induced allergies, that I've mostly dealth with and still the dizziness.

I'm looking into the causes of this (inner ear issue, possibly a form of Meniere's?), but am wondering if anyone else with celiac has also had similar problems? (or, if you have any advice, even if it's not

I have been sticking to the gluten-free diet for over 2 years and most of my symptoms have gotten better.

I currently have low iron, though (not anemic, but bad enough to need supplements), which may be causing some of the dizziness, and could be due to trace gluten a little too often.

I've done a little research, and hear that a low-sodium diet can help with balance problems (regulate fluid in the inner ear). Anyone have experience/advice on eating a gluten-free and low-sodium diet?

Any help/advice/etc would be great.

Thanks a lot!

Peg

I didn't eat salt for 5 years, unless it was already in some food I had bought. I thought it was causing my high blood pressure so I cut it out. I did the same thing with sugar, and still don't use sugar except rarely I'll use a little molasses.

I wasn't feeling well and so one day I decided to test my thyroid function. I suspected I might be low on iodine because I wasn't eating salt and my vitamin pills didn't have any. So I ate an apple but sprinkled iodized salt on it. Tasted real good and 20 minutes after eating it I was bouncing off the walls. That convinced me to start eating iodized salt again. Made a big difference. I still don't know how people with DH can avoid iodine and feel good.

I have had ringing ears on and off for years now. They ring more when I eat something that my body reacts to. Less when i don't. It's one of the ways I know I ate something problematic.

I wonder if your dizzyness and ringing could be caused by a swelling in the ear? Maybe a reaction to something in your diet?

[ElitaSue]

I ended up at the ER a couple of months ago because I was so dizzy and they gave me Meclizine (same as Dramamine). Works wonderfully. Seems like I get it around July every year - so maybe allergy or I get gluttened (I go to a lot of family BBQ's and such, and everyone always swears up and down no gluten but they just don't know the whole deal).

Anyway, I have had such problems with the Ataxia, epilepsy, dystonia, and lately just slowly growing more stupid and loosing my memory. I had to find a good neuro which has not been an easy task, but finally I found one with the courage to take on a Celiacs. She is a neuro/psych (Celiac's is a whole new deal for her) and gave me a drug called Deplin, which I guess is actually categorized a medicinal food. One pill has the equivalent of 60, 800 mg capsules of Folic Acid and immediately passes the blood brain barrier and is readily absorbed into the central nervous system. You can find the supplement L-methylfolate, but I understand that the Deplin is better for being absorbed quickly.

But got to tell you - WOW. I had no idea how bad I felt until I started feeling good. Absolutely wonderful. So much of the neuro stuff is clearing up. I am just so wonderfully happy that I found a good doc and something that works! ; )

Cheers!

[AVR1962]

I found that my tinnitus was related to a salicylate sensitivity. It's a deficiency in how my body handles salicylates (and other phenols, too), which are very high in fruits, spices, herbs and some vegetables. There's a great information site if you Google "Salicylate Sensitivity". There seems to be a connection for some celiacs.

Peggy, I thought about it because you mentioned you felt worse after eating biryani - does it have a lot of spices?

Going gluten free helped me somewhat, but I knew that there had to be something else because I still had issues with rosacea and tinnitus. I've also had vertigo a few times. A rosacea site led me to the salicylate issue and my rosacea is much diminished now. My tinnitus is directly correlated with salicylates, I have found. It may be something to look into.

I hope you find a solution.

Really? Wow! I just did connect my itching to this but this may also explain why the ringing in my ears has not stopped. I thank you for this reply!

[Pegleg84]

Wow! Nice to see this thread has continued in my absence.

I was going to give an update: I've seen the ENT specialist and gotten a few tests done since I posted last. My hearing test was normal. I went for an MRI which ruled out any growth on my ear that could be causing the tinnitus (which is same as always. I just ignore it). I went for balance testing (with the eye-tracking goggles, and water in your ear. great fun). Just got the results, and any of the non-visual tests came back normal. Any dizziness detected was same in both ears. In other words, this is likely not a vestibular (inner ear) problem.

However, I had trouble with the visual tracking (you follow a light with your eyes, and the computer measures your eye movements). My vision's pretty bad, so it could be cause I didn't have my glasses on, or it could be something neurological? I'll be discussing it with my GP, the opthamologist I'm seeing next month, and the neurologist after I have a 2nd MRI (for something unrelated, but who knows what might pop up)

In the meantime, the dizziness hasn't gone away, but I've been finding that cutting back on salt, dairy (not sure yet if its the lactose or just milk in general), and trying to get enough exercise. And, as usual, avoiding gluten like the plague. I've been under a lot of stress the past couple weeks, so that's been aggravating it. I feel very fuzzy-brained and unsteady, like being high or drunk all the time.

I will look into that salic(?) levels in those foods mentioned. Maybe I've developed intolerances to other things.

If anyone has any further advice on diet, or knowledge of non-vestibular vertigo/dizziness, pass it along.

I will keep plugging away, learning to deal with life as a slightly dizzy person, which right now means eating properly, sleeping well, and not getting stressed about it.

Thanks again all!

Peggy

[AVR1962]

Thanks for the update. I did get my buzzing in my ears to pass at one point. I was feeling very good, this was over a month ago.....cut back on my Bcomplex and the buzzing came back even worse than it was before. It took 10 days for it to catch up to me and then it took almost that for me to feel good again by adding the B complex back. Today I have had only light tones, no real hard buzzing.

As far as the balance, I have not noticed salt, dairy or sals make s difference. For me, definately gluten will make me off balance for 3+ weeks.....any gums like guar gum or zanthum gum will give me vertigo for 3 days, and high fructose will also make me dizzy for 3 days. Alcohol, for me, agitates the ataxia so I have been steering clear of it too.

I have managed to pass 4 weeks without glutening which is the longest I have been able to not get glutened since I went on the gluten-free diet 6 months ago so I am keeping my fingers crossed. If any of you come up with something in the meantime please let me know. Thanks!

[domesticactivist]

It doesn't seem like this is your problem but for others who may be reading - check into medications.

I uses to take Valtrex occasionally, and I was fine with it for several years, then it started giving me vertigo to the point I had to lie still in bed (dizzy, buzzing) or get the serious spins (falling if i tried to walk, nausea and vomiting if i moved)

for days off one pill. Turns out it's a rare but acknowledged side effect.

[T.H.]

Okay, first - jeesh there is a lot that can cause dizziness! I swear, the fact that we so often navigate this on our own, without a lot of help, and STILL figure it out is frankly amazing!

On that note, something that may help some here, but definitely not all, re: gluten ataxia - I mentioned in my earlier post that I had to drop gluten down to ridiculously low levels to stop my own dizziness. Found some additional information out since then.

Safe gluten levels for celiac disease have been studied, so the average celiac being okay on X amount of gluten is being looked at and, hopefully, refined.

Safe gluten levels for gluten ataxia have NEVER been studied, to my knowledge. I have been checking studies, journals, even pestered some of the doctors at celiac research centers, and they were telling me exactly what I was finding: they didn't know of any studies done on this issue, either.

So what that means, essentially, is that gluten levels in gluten free food are of unknown safety for those with gluten ataxia.

And for those looking at ataxia and wondering if you have it? I wondered for a while if my vertigo was really gluten ataxia, too, because it seemed mild for what I saw described, and didn't really match the symptoms I was seeing on medical sites. I didn't have speech issues, shaking limbs and such, so it was really just the vertigo, which isn't even listed as an ataxia symptom on many sites.

It was only after I got rid of the vertigo that my symptoms of glutening worsened, and they started to resemble ataxia to a greater degree.

In the beginning, I had vertigo and that awful feeling like it was just one side of my head. I think someone here mentioned feeling lopsided, yeah? That was it exactly. I didn't have trouble controlling my limbs, didn't notice any other issues except the vertigo, honestly. I was tested at specialist's offices, they found nothing.

Since going on this diet, though, the symptoms are HUGE if I get gluten cc. Now, if I ingest something with gluten, my speech starts slurring like I'm drunk, I get the vertigo except much worse than before, certain nerves start having pain in random patterns, I have problems comprehending what people are saying, and have difficulty remember how to say certain words. And I notice my gait is off for a few days, my ability to judge the distance between me and objects is totally off, too. That latter I have seen listed as a gluten ataxia symptom a couple places, as I recall...might explain the golfing issue, possibly?

So for those who have think they might have gluten ataxia but the symptoms seem too mild for it? I can say that at least in my case, mild symptoms didn't rule ataxia out.

[pricklypear1971]

Okay, first - jeesh there is a lot that can cause dizziness! I swear, the fact that we so often navigate this on our own, without a lot of help, and STILL figure it out is frankly amazing!

On that note, something that may help some here, but definitely not all, re: gluten ataxia - I mentioned in my earlier post that I had to drop gluten down to ridiculously low levels to stop my own dizziness. Found some additional information out since then.

Safe gluten levels for celiac disease have been studied, so the average celiac being okay on X amount of gluten is being looked at and, hopefully, refined.

Safe gluten levels for gluten ataxia have NEVER been studied, to my knowledge. I have been checking studies, journals, even pestered some of the doctors at celiac research centers, and they were telling me exactly what I was finding: they didn't know of any studies done on this issue, either.

So what that means, essentially, is that gluten levels in gluten free food are of unknown safety for those with gluten ataxia.

And for those looking at ataxia and wondering if you have it? I wondered for a while if my vertigo was really gluten ataxia, too, because it seemed mild for what I saw described, and didn't really match the symptoms I was seeing on medical sites. I didn't have speech issues, shaking limbs and such, so it was really just the vertigo, which isn't even listed as an ataxia symptom on many sites.

It was only after I got rid of the vertigo that my symptoms of glutening worsened, and they started to resemble ataxia to a greater degree.

In the beginning, I had vertigo and that awful feeling like it was just one side of my head. I think someone here mentioned feeling lopsided, yeah? That was it exactly. I didn't have trouble controlling my limbs, didn't notice any other issues except the vertigo, honestly. I was tested at specialist's offices, they found nothing.

Since going on this diet, though, the symptoms are HUGE if I get gluten cc. Now, if I ingest something with gluten, my speech starts slurring like I'm drunk, I get the vertigo except much worse than before, certain nerves start having pain in random patterns, I have problems comprehending what people are saying, and have difficulty remember how to say certain words. And I notice my gait is off for a few days, my ability to judge the distance between me and objects is totally off, too. That latter I have seen listed as a gluten ataxia symptom a couple places, as I recall...might explain the golfing issue, possibly?

So for those who have think they might have gluten ataxia but the symptoms seem too mild for it? I can say that at least in my case, mild symptoms didn't rule ataxia out.

In retrospect one of my first symptoms was vertigo and dizziness. Wrote it off to allergies.

It intensified at the end just before dx. Had one morning when I literally fell down when getting out of bed - the world was sideways.

I still don't get many stomach issues with gluten - but do get a weird swimmy, drunk feeling....and apparently it's the ONLY symptom sometimes. I also get shaky hands...but less so now. I do feel a bit of ear pressure once in a while - but honestly it really could be seasonal allergies. I never know anymore. I've also noticed dry eyes when I'm having problems with (assumed) gluten.

[AVR1962]

Okay, first - jeesh there is a lot that can cause dizziness! I swear, the fact that we so often navigate this on our own, without a lot of help, and STILL figure it out is frankly amazing!

On that note, something that may help some here, but definitely not all, re: gluten ataxia - I mentioned in my earlier post that I had to drop gluten down to ridiculously low levels to stop my own dizziness. Found some additional information out since then.

Safe gluten levels for celiac disease have been studied, so the average celiac being okay on X amount of gluten is being looked at and, hopefully, refined.

Safe gluten levels for gluten ataxia have NEVER been studied, to my knowledge. I have been checking studies, journals, even pestered some of the doctors at celiac research centers, and they were telling me exactly what I was finding: they didn't know of any studies done on this issue, either.

So what that means, essentially, is that gluten levels in gluten free food are of unknown safety for those with gluten ataxia.

And for those looking at ataxia and wondering if you have it? I wondered for a while if my vertigo was really gluten ataxia, too, because it seemed mild for what I saw described, and didn't really match the symptoms I was seeing on medical sites. I didn't have speech issues, shaking limbs and such, so it was really just the vertigo, which isn't even listed as an ataxia symptom on many sites.

It was only after I got rid of the vertigo that my symptoms of glutening worsened, and they started to resemble ataxia to a greater degree.

In the beginning, I had vertigo and that awful feeling like it was just one side of my head. I think someone here mentioned feeling lopsided, yeah? That was it exactly. I didn't have trouble controlling my limbs, didn't notice any other issues except the vertigo, honestly. I was tested at specialist's offices, they found nothing.

Since going on this diet, though, the symptoms are HUGE if I get gluten cc. Now, if I ingest something with gluten, my speech starts slurring like I'm drunk, I get the vertigo except much worse than before, certain nerves start having pain in random patterns, I have problems comprehending what people are saying, and have difficulty remember how to say certain words. And I notice my gait is off for a few days, my ability to judge the distance between me and objects is totally off, too. That latter I have seen listed as a gluten ataxia symptom a couple places, as I recall...might explain the golfing issue, possibly?

So for those who have think they might have gluten ataxia but the symptoms seem too mild for it? I can say that at least in my case, mild symptoms didn't rule ataxia out.

All too familiar. I will experience vertigo from taking in some of the gums like guar gum, and high fructose will do the same for me but it will be gone in 3 days, thank goodness. The one I had the harder time with was the issues related to gluten. For 6 months I have continued to clean up my diet and I have been extremely careful. Made many mistakes and got glutened too many times but what I can say is that persistance pays. I had to go to absolutely no gluten, not even a grain. It has been almost 5 weeks since my last accidental glutening and I am feeling near normal right now.

[Reba32]

I've been strictly gluten free for nearly 2 years now, and the persistent vertigo appeared well after I'd gone gluten-free. I even recently had blood tests done, and there is no evidence that I am ingesting gluten at all, so it's not cc. (my GP didn't believe me that I strictly adhere to a gluten-free diet, and have never cheated since diagnosis. She was giving me that "yeah yeah, sure sure" smile and nod ) My vertigo remains undiagnosed, but I am going for more tests next week with the ENT. Sounds like it'll be a fun 2 and a half hours! Not.

[T.H.]

I even recently had blood tests done, and there is no evidence that I am ingesting gluten at all, so it's not cc.

That's one of the things that really surprised me when I finally started exploring the gluten ataxia and safe gluten levels. I used to think that the tests could detect whether I was getting gluten cc, but this isn't actually the case. The tests just look at whether we are ingesting enough gluten cc to set off the antibodies that attack our gut, you know? So the tests can be completely negative even with a little gluten cc, as long as we are eating low enough gluten levels to keep our celiac-triggered antibodies happy.

But doctors don't have a good test yet to tell if we are eating levels that set off whatever is attacking the nervous system in gluten ataxia (last I looked, anyway). So with completely negative tests for celiac disease, we can still be experiencing gluten ataxia.

One study - have to track that down in my horde of links, if anyone is interested - showed that a few people suffering from gluten ataxia NEVER developed gut damage or antibodies against the intestines on gluten ingestion. But their ataxia symptoms still went away when they went gluten free.

Early on in reading about ataxia, I had thought that gluten ataxia was a variation of celiac disease, but the more I read, the more it seems that this is really in question, in part because some gluten ataxia sufferers never get gut damage at all.

It's made me look at my own issues quite differently. I'm a diagnosed celiac, but if I have gluten ataxia...what if they are, absolutely, two different things? Then that means that I may be a healed Celiac, have great blood work and villi height, but all that would be completely irrelevant in terms of the health of my nervous system. Celiac tests wouldn't be looking at damage in the right places, or possibly at the right anti-bodies, either. So I can be a healed celiac and possibly an unhealed...hmmm...Ataxiac?

Heck, maybe I'm not a super-sensitive Celiac at all, but a super-sensitive Gluten-Ataxia-Person. The symptoms I have the most trouble with are all the neurological ones, so I joke about it, but it's definitely a question in my brain at times.

Not that it makes much difference, in the final round. I still have to avoid gluten in either case, after all. At this point, I've decided to avoid gluten levels lower than the average, pretty much based on my symptoms rather than the tests. It seems to work the best for me, even if it's a pain in the petutie.

[AVR1962]

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[Kamma]

Two years ago, I started having vertigo and balance problems. I was lucky enough to get in to see a neurologist who ordered an MRI (negative for MS and/or tumours relating to balance) and referred me to an ENT. The ENT diagnosed benign paroxsymal positional vertigo and suggested these techniques to help get the 'balance stones' in my ear back on track. Well, I have done advanced yoga for twenty years and in spite of being able to twist myself in all different positions with my head hanging upside down as well as doing the techniques that she showed me, the vertigo and balance problems only got worse and was gradually accompanied by tinnitus, brain fog and sensitivity to noise.

One year ago I started having episodes in which my head would start bobbing and my upper torso would start rotating in circles and I couldn't control it. In some instances it would be slight and in other instances it would get very intense and violent. The neurologist sent me to an opthaneurologist who diagnosed possible Tulllio's phenomenon (vertigo induced by sound). However, this diagnosis still did not cover the the head bobbing and torso rotation episodes and I also tested negative for epilepsy. He sent me to another ENT who ruled out meneire's disease as I do not have hearing loss.

I have a niece who was diagnosed with celiac when she was two (she's thirty now). My brother suggested that I should be tested for celiac and since then I have started researching it and was amazed to find out that celiac can present itself just neurologically. (Because of my niece I had always thought of celiac in terms of the classical symptoms). I have in the last six years had problems with pains in my stomach and the huge fatigue but again, just thought it was 'me'.

I have an appointment with the neurologist this coming week and I'm going to be asking to be tested for celiac. I really, really hope that this is what it is as my whole life has come to a screeching halt for the past two years and in spite of getting worse over time, nobody can figure out whats happening to me.

[AVR1962]

Two years ago, I started having vertigo and balance problems. I was lucky enough to get in to see a neurologist who ordered an MRI (negative for MS and/or tumours relating to balance) and referred me to an ENT. The ENT diagnosed benign paroxsymal positional vertigo and suggested these techniques to help get the 'balance stones' in my ear back on track. Well, I have done advanced yoga for twenty years and in spite of being able to twist myself in all different positions with my head hanging upside down as well as doing the techniques that she showed me, the vertigo and balance problems only got worse and was gradually accompanied by tinnitus, brain fog and sensitivity to noise.

One year ago I started having episodes in which my head would start bobbing and my upper torso would start rotating in circles and I couldn't control it. In some instances it would be slight and in other instances it would get very intense and violent. The neurologist sent me to an opthaneurologist who diagnosed possible Tulllio's phenomenon (vertigo induced by sound). However, this diagnosis still did not cover the the head bobbing and torso rotation episodes and I also tested negative for epilepsy. He sent me to another ENT who ruled out meneire's disease as I do not have hearing loss.

I have a niece who was diagnosed with celiac when she was two (she's thirty now). My brother suggested that I should be tested for celiac and since then I have started researching it and was amazed to find out that celiac can present itself just neurologically. (Because of my niece I had always thought of celiac in terms of the classical symptoms). I have in the last six years had problems with pains in my stomach and the huge fatigue but again, just thought it was 'me'.

I have an appointment with the neurologist this coming week and I'm going to be asking to be tested for celiac. I really, really hope that this is what it is as my whole life has come to a screeching halt for the past two years and in spite of getting worse over time, nobody can figure out whats happening to me.

Keep us informed. I hope it is an answer for you!

[Kamma]

Keep us informed. I hope it is an answer for you!

Thank you, AVR.

[Jenny (AZ via TX)]

As other posters have mentioned, there are many reasons for being dizzy. Mine turned out to be my eyes. My doctors thought it was neurological.

I was dizzy for about a year. It started when I rolled over in bed onto my right side. This was called BPPV. Everything was spinning and was horrible. After that episode I had both vertigo and dizziness for about a year. I went to numerous doctors including eye doctor, family doctor, two ENTs and a neurologist. I had 2 CT scans and an MRI. I was basically homebound for a year. Driving was impossible.

Then my sister told me about this doctor in Michigan (I live in Arizona). She gave me her website (vsofb.com). I looked it over and it talked about this doctor (Dr. Debby Feinberg) that treats patients for vertical heterophoria. I had never heard of it. The more I read, the more it sounded like me. I called the doctor and she called me back and spoke to me for at least 30 minutes. She faxed me over a questionnaire and had me fill it out. I sent it back and she called me back that night. She also told me about another doctor in Houston that does what she does.

Dr. Debby is an optometrist and specializes in this eye condition called vertical heterophoria. This is a condition where one eye sees higher than the other. It was an easy fix. I had to wear glasses with a prism in them. I couldn't believe I suffered with the dizziness for a year and it could be fixed with glasses! I'm so glad I went to see her. I went to several specialists before seeing Dr. Debby and not one of them could figure out what was wrong.

It turns out the best doctors to diagnose this are optometrists, not opthamologists. Also, it's best to go to one that specializes in vision therapy.

Just for history purposes, this dizziness happened before I was dx'd with celiac and was gone before I was gluten free. I was dx'd with celiac about 6 months after I started wearing the glasses.

I just wanted to put out another option if you have exhausted all others. I hope you feel better soon!