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Tinnitus And Balance Problems/mild Vertigo


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#1 Pegleg84

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Posted 03 August 2011 - 04:53 PM

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

~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


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#2 blueshabooMoon

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Posted 03 August 2011 - 05:57 PM

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
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#3 Bubba's Mom

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Posted 04 August 2011 - 08:31 AM

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!
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#4 T.H.

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Posted 04 August 2011 - 03:15 PM

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.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#5 Pegleg84

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Posted 08 August 2011 - 09:08 AM

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

~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


#6 Austin Guy

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Posted 11 August 2011 - 01:02 PM

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!
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Self-diagnosed gluten intolerant May 10, 2011 after going gluten free May 8.
Allergic to cat dander, salmon, nuts, lots of airborne pollens and mold.
Soy intolerance August 2011
Dairy and egg intolerance November 2011
Peanuts 2013
 


#7 Reba32

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Posted 19 August 2011 - 11:57 AM

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)
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#8 rustycat

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Posted 20 August 2011 - 10:24 AM

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.
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Rickets (severe Vitamin D deficiency) shortly after birth
First trip to Dr with severe C, age 7
Infertility, multiple miscarriages, eventually adopted 2 boys (not related)
2010: Negative celiac blood test, but staying on gluten free diet due to vast improvement in all symptoms
2011: June - started low salicylate diet to improve rosacea - it worked really well!
2012: May - started Paleo way of eating. Emotions and blood sugar seem to have evened out. Brain fog vanished.

2013: May - after 4 month elimination diet, was able to add back dairy, but nightshades are gone for good (my arthritis is gone, too!!!)


#9 JH85

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Posted 22 August 2011 - 08:45 AM

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??
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#10 GFinDC

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Posted 22 August 2011 - 04:32 PM

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?
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#11 ElitaSue

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Posted 11 September 2011 - 05:37 PM

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!
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#12 AVR1962

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Posted 12 September 2011 - 12:13 AM

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
Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#13 Pegleg84

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Posted 29 October 2011 - 10:15 PM

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

~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


#14 AVR1962

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Posted 30 October 2011 - 08:13 AM

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
Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#15 domesticactivist

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Posted 30 October 2011 - 08:25 AM

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
Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.


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