Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Tinnitus And Balance Problems/mild Vertigo
0

52 posts in this topic

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

1

Share this post


Link to post
Share on other sites


Ads by Google:

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

1

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites




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!

0

Share this post


Link to post
Share on other sites

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)

0

Share this post


Link to post
Share on other sites

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.

1

Share this post


Link to post
Share on other sites

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 :D 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!!! :angry: 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??

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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 :P ) 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.

0

Share this post


Link to post
Share on other sites

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. :blink:

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. :lol: 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. :)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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

Thank you, AVR. :)

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,640
    • Total Posts
      921,547
  • Topics

  • Posts

    • You should never have cut out gluten until you had the biopsy done. It's much worse to have to go back on after you've been off gluten for a while. There's no way I could ever do the gluten challenge after being off gluten for even a month because my reactions got so dramatically worse.  Stress definately can trigger celiac- before I was diagnosed - it got the worst after surgery and after a stressful time planning my daughters wedding. 
    • Hi not diagnosed celiac, Welcome to the forum! Your doctor should be sent to remedial celiac disease training.  Since that probably won't happen, I suggest you find a new doctor.  He doesn't know what he's doing when it comes to diagnosing celiac disease. You should not have gone gluten-free before completing all celiac disease testing.  The testing for celiac disease depends on the immune reaction being active.  Removing gluten before testing removes the antigen that causes the immune system to react, and lowers the chances of getting a correct test result dramatically.  The University of Chicago celiac disease center recommends: ******************************************** http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013 ******************************************** So you will need to go back to eating gluten before your endoscopy.  That may cause worse symptoms than before when you were eating gluten.  So it would have been better to do all testing before going gluten-free. Can you search for a celiac disease support group in your area?  They exist in many parts of the USA and world.  They can be a good place to get a knowledgeable doctor recommendation.  There is also a doctors subsection of this forum where you can search to see if any doctors in your area were recommended.
    • Hi All, I'm new to this and very confused! I have Lea & Perrins WC sauce, it lists it's first ingredient as Malt Vinegar.  I have the Coeliac Society of Ireland Food List 2015 here, and it says "All Vinegars are Gluten Free including Malt Vinegar." Doesn't that mean that L&P Worcestershire sauce is safe?   Their website states " Lea & Perrins® Worcestershire Sauce is cholesterol free, fat free, preservative free, gluten free and has 80% less sodium than soy sauce. " I'm cooking for my coeliac niece, can't afford to make a mistake!
    • I get these crazy cravings for some things I can not eat anymore. Not only am I diagnosed with celiac but I also have a allergy to corn, olives, sesame, peanuts, and intolerance to yeast, soy, dairy, and a very low tolerance for carbs/sugars, Top it off with I can not digest meats or egg yolks, they just give me the burps and come up later.
        To deal with these I find myself turning to Republic of Teas (They have a great desert tea line up all certified gluten-free) and sweetening them with monk fruit extract, or stevia. And I find myself making Puddings bases that I use for shakes, dips, and ice-cream for meals. The puddings are normally a blend of cashew, or almond milk with a thickening agent like agar agar, pectin, or knoxx gelatin, blended with a sweetener like xylitol, swerve, stevia, monk fruit or a combination. And flavored with Lor Ann Oils (all gluten-free certified and you can find the kosher ones listed as such) super strength flavors or fountain syrups to match something I can not eat normally a combination of two flavors (Strawberry Cheesecake, Banana and Carmel, Cookies & Cream, etc) Then I add a fat that matches best, like almond butter, cashew butter, hemp butter, ground flax seed, coconut flour, chocolate, Pumpkin seed butter or a combination) These bases are normally blended up and consumed with 1-2 scoops of protein powder and eaten with steamed vegges as a side dip or loaded into a ice cream maker for a desert after my meals.      Also found myself making desert soups....like a pumpkin soup that taste like pumpkin pie. I am sure we all have our little quirks but this is one of mine for getting that sweet craving taken care of. Most premade items are off my list due to the allergies and it seems most companies use the oils, starches I am allergic to as non stick or thickening agents, Even the semi safe ones tend to put way to much sugars in them and I find myself only being able to nibble . There is also my little binge issues with almonds, pumpkin seeds, and, cocoa but that was explained to me as normal And on my most craving for peanuts I have found sancha inchi powder to work great, The Powder itself taste like the girl scout peanut butter cookie sandwich from my childhood, And is great mixed with a bit of almond milk into a butter or used in baking and smoothies. Before this I have been making Artisan blends of almond butter for years and even made a market selling them to pay  for my own consumption. Baked goods wise I have a bunch of recipes I make for others and sell at markets and this allows me to nibble on a sample to check it, as most contain a bean or gluten-free Harvest Oats/Flour in them and the carbs from that and the coconut sugars bother me. Still helps with cravings there, I only have 2 recipes that sell good and are safe for me to eat full servings of but are so expensive as they use almond and coconut flours, low sugars/xylitol and are paleo that I only can afford to make them once a month. Posting to hear about some odd and out there ways others deal with substitutions and cravings. Please do not bash mine as odd as they might be as they keep me from going crazy. (Yes I know DROP THE OATS, fact is I only get them when tasting stuff and they are gluten-free Harvest, the only ones I have never gotten glutend with)  
    • After suffering pretty much all year with one illness after another I've finally managed to get a diagnosis and it turns out to be celiac. After my doctors consistently failing to even consider the possibility it might be that (as opposed to "IBS" or "stress") I kept pushing for the Iga TTg test and it was off the charts with a score of >128... may as well fail it in style I guess. So here I am at the start of what feels like the end of my life as I know it. Been doing nothing but reading for the past week and frankly it's terrifying. Here's a few things that are going round in my head and I'd really appreciate your thoughts with. Apologies if it's a bit of an essay  Diagnosis I'm still furious at my doctors for not even entertaining the thought that celiac could be the root cause of all my ills. Given the blood test is so simple it feels almost negligent that they don't run this right at the start to rule it out. Instead I got subjected to poisons like Omeprazole which made me even more ill, whilst being told the physical symptoms were all in my head. Just as well I knew better and kept hitting up Google until my self-diagnosis was proved correct... to think these people get paid highly to be so incompetent makes my blood boil. Does feel good having outwitted the so-called professionals though. Seems 9 months is comparatively quick from symptoms to diagnosis compared to some others that have gone years with the problems so could be worse I guess. Food and diet I'm male vegetarian (non-negotiable) which makes this even harder as so many of my protein sources are now ruled out. Seems many with celiac were having trouble losing weight whereas I'm in the opposite situation. Already lost best part of a stone in the past few weeks and it's becoming noticeable now. The MyFitnessPal app reckons I need 2600 calories a day to maintain \ gain weight - no idea where that's going to come from. On top of that I read sites like Gluten Dude where even the Gluten Free foods are seen as poisons and going on extreme diets like Paleo \ SCD are the only real way forward. Again being veggie makes that practically impossible and if I'm unlucky enough to end up with the dairy issues as well I'm well and truly stuffed. Right now I'm trying the gluten-free Quorn products to see how I go, as well as more eggs etc. Porridge has been my go-to breakfast in the mornings for a while after I cut out bread whilst self-diagnosing but depending on where you read even that's a potential problem (currently using gluten-free porridge oats and seeing how it goes) Seems many gluten-free people have to go right back to basics and cook everything from scratch. That's a problem for me as I'm utterly hopeless on that front and time doesn't permit waiting hours just to prepare one meal. Seems nigh-on impossible to do day-in, day-out. Health Rightly or wrongly right now I see this diagnosis as a death sentence long-term. Looks like it brings other associated illnesses with it and this particular article really scares me: http://scdlifestyle.com/2012/03/the-gluten-free-lie-why-most-celiacs-are-slowly-dying/ I've only really had noticeable symptoms for the past year or so but wonder how long this has been going on for and what damage has already been done. All seems to have started from when I turned 30 (knew I was dreading that age for a reason) and right now I wonder how long I'm going to last before the really bad stuff starts. One of the other illnesses I'd considered as a possibility before getting diagnosed was Hashimoto's Thyroiditis; now it seems that's closely linked with Celiac so may not be out of the woods with that yet either. Just seems to be one big list of illness all triggered from the same point One positive change I've noticed thus far since cutting out gluten is that bloating seems to have gone down and bowel movements are better. Still getting headaches and muscle twitching, which could be as much a withdrawal symptom from gluten as anything else.  Some sites were suggesting stopping exercise whilst withdrawing but I can't face that as it's the only thing keeping me going at present. Again will keep going as-was and see what happens. Then to top it off it sounds like the next step is the biopsy - I'm scared of being put out for the procedure as a member of family went into hospital a few years back for something supposedly routine and never came back out. From what I've been told it's important to have done though as it shows just how broken the villi are so another thing to worry about in the meantime. I've just read on another thread that you have to be on gluten to have the test, that's another kicker after having started to cut it out the diet. With such a high blood test Iga-TTg score isn't it almost certain that celiac is the cause and the endoscopy in this case is just confirming levels of damage? OK means I can have a final blow-out eating all the "bad" foods but no doubt with all the side effects that come with it... Social life Seems like despite there being some gluten free options in certain restaurants (granted better now than years ago) I'm going to be hugely limited in food options. Either sitting on the side looking on or just plain not able to go out much anymore. Already had the first hitting-home moment watching colleagues eating pastries that were brought in while I just have to look on... then it dawns that this is never going to get better... urghhh Family life I'm really struggling to accept this lifelong illness and loss of health and it's taking a toll on the people around me at the moment. They won't be going gluten-free so will have to take my chances with the mixed kitchen environment; already gone with split toasters etc. so can't do much more than that. Dating Basically seems game over on that front, unlike many who are diagnosed with understanding partners \ spouses I'm still in the dating game, which is judgemental enough as it is without all the complications that the gluten issues bring. I'm reading even kissing someone with lipstick \ make-up is apparently a big no-no... once any date hears that they won't be coming back... forever alone status confirmed is how it looks right now. Overall feelings I still can't quite figure out if this illness was in me all along and just hasn't flared up enough to notice until now or whether the extreme stress I've been under for the past year or so has triggered it. If the second scenario is correct I can't stop thinking about the events that all led up to this almost year-long bout of ill health and life-changing diagnosis. Can celiac be brought on by stress alone or realistically was I always a ticking timebomb just waiting to be set off? For every person I see that's had a positive change after cutting out gluten (and getting by with reasonably achievable adjustments) there seems to be 10 others with horrible side-effects and long-term complications. Right now the future feels rather bleak - like all hope just been taken away. Help???
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,643
    • Most Online
      3,093

    Newest Member
    moojoo
    Joined