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Tinnitus And Balance Problems/mild Vertigo


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#31 UnhappyCoeliac

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Posted 11 November 2011 - 04:15 PM

lot of long replies here but so far I have it down to.
Meniere is related to Coeliac
Going gluten free is unlikely to help your ears but having to go Gluten Free means you are more likely to have or develop Menieres.

I been gluten-free for a week and the tinnitus hissing is as loud as ever. Starting to think they are not related, low sodium might be the key
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#32 UnhappyCoeliac

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Posted 13 November 2011 - 05:32 AM

can people give me a rough timeframe here been going a week no difference so far, at what point does Gluten-Free = less vertigo and tinnitus?

Although it seems I have Meneires which sucks I still cling to hope I just have to remain gluten-free.
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#33 GFinDC

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Posted 13 November 2011 - 08:02 AM

Hi UC,

I am sorry to hear you are having problems. There are other possibilities besides Menier's though right? You may have low B-12 or other vitamin levels from malabsorption. That can cause nerve damage. Some of that might correct given enough time gluten-free, so that your intestine can heal and start absorbing nutrients correctly. Have you read up on gluten ataxia? Gluten ataxia is caused by celiac also and has some similar symptoms. They say that the nerve damage issues take a while to resolve, if they do resolve. Six months or more perhaps.
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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

#34 Kamma

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Posted 13 November 2011 - 11:58 AM

Unhappy Coeliac,

I'm on gluten right now in preparation to be tested for celiac but during the summer when I started to suspect that my ataxia, vertigo, tinnitus, exhaustion were gluten related, I eliminated it from my diet. For me, it took about a week to two weeks before I began to see an improvement. I was already on a low sodium diet as it was recommended by an ENT so that probably helped too.

There was some speculation months ago that I might have meneire's but while I had three of the four symptoms of classcal meneires, I did not have the hearing loss. Do you have hearing loss in addition to your tinnitus, vertigo and ear pressure?
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#35 UnhappyCoeliac

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Posted 13 November 2011 - 03:52 PM

Unhappy Coeliac,

I'm on gluten right now in preparation to be tested for celiac but during the summer when I started to suspect that my ataxia, vertigo, tinnitus, exhaustion were gluten related, I eliminated it from my diet. For me, it took about a week to two weeks before I began to see an improvement. I was already on a low sodium diet as it was recommended by an ENT so that probably helped too.

There was some speculation months ago that I might have meneire's but while I had three of the four symptoms of classcal meneires, I did not have the hearing loss. Do you have hearing loss in addition to your tinnitus, vertigo and ear pressure?




yes sadly I have hearing loss in the classical kind of meniere's way, worse at the lower frequencies. I've had a brain scan and there is apparently nothing wrong so the ENT said probably it's neurological. Low salt diet is quite extreme in my eyes, basically confines me to veggies which make me gag for potentially the next 2/3's of my life. No alcohol no nothing I am still a young man will ruin my life and make me even more miserable!

I have had a cold maybe thats making the tinnitus worse hopefully it is because being strictly gluten free has no had an affect so far. It's been completely underwhelming really I thought I would also be sleeping less being Gluten-Free but no, I should just go back to eating pizzas!
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#36 Kamma

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Posted 13 November 2011 - 04:03 PM

Nah, don't give up on it yet. Give it a few more weeks to let your body re-adjust.

Regarding the salt, once you get into it, your tastebuds acclimatize and things don't taste bland nor do you miss tasting the salt. There's a period of adjustment where you go, "wow, this tastes like nothing without salt!" but that disappears eventually and you begin to taste the actual flavours of the food. Now, even if a little bit of salt is added to food that someone else prepares, I am able to taste it right away.

Im sorry to hear you have the hearng loss as well. Is it in both ears or just the one?
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#37 Reba32

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Posted 15 November 2011 - 08:59 AM

can people give me a rough timeframe here been going a week no difference so far, at what point does Gluten-Free = less vertigo and tinnitus?

Although it seems I have Meneires which sucks I still cling to hope I just have to remain gluten-free.



for me, the vertigo didn't even present until more than a year after I'd been gluten free. And I have not had any cross contamination in quite some time, I'm extremely careful with what I eat, and I *know* it when I've been cc'd, because within 20 to 30 minutes, I'll be in pain, doubled over and can't breathe.

The easiest way to lower your salt intake is to stop eating manufactured foods and cut out bubbly soft drinks. Salt is necessary in the diet, but if your diet consists mainly of packaged man-made foods, you're getting too much of it. If you eat whole, natural foods, and just salt to taste, you can do ok. Up to 1/2 tsp of salt per day is fine, and that's quite a lot, if it's just sprinkled on your meals.
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#38 Eboronkay

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Posted 19 December 2013 - 10:06 AM

I was diagnosed with Menieres almost 30 years ago. Dizziness, nausea, tinnitis, ears feeling stuffed with cotton, reduced hearing. The meds they gave me knocked me out so badly that my 3 year old climbed up the cabinets unnoticed, found the matches, and I woke up to the carpet on fire. Thank God for adrenaline. Put it out immediately and then called the doctor. He was older and said that before the moderns meds he used to prescribe alfalfa as a diuretic and niacin (not niacinamide) to open the capillaries allowing inner ear to drain properly. Worked like a charm for years. I also have not had significant hearing loss.

It got bad again about 10 years ago and a doctor added Dramamine and Bonine to my regimen. If one didn't work the other one usually did.

Then salt became an issue. I work on keeping the sodium low. Plus my acupuncturist suggested ginkgo biloba which promotes circulation in the head. Much better. I take it daily and highly reccomend Kroeger Herb as they use the powdered leaf with the extract instead of fillers.

Then sugar became an issue. Then gluten. And forget alcohol of any kind in any amount. Instantly dizzy. Arrrrghhh.

So now I use my whole bag of tricks to get thru an attack plus a new one I found in CVS, of all places. It's called DiVertigo. It's a small bottle of essential oils. You rub 1-2 drops behind each ear. It was expensive but they said I could bring it back. No way. Not only does it help the vertigo, it also has helped the tinnitus.

Ingredients: lavender, peppermint, ylang ylang, frankincense, chamomile, and myrrh.
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#39 0range

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Posted 19 December 2013 - 10:46 PM

I have tinnitus, and on/off vertigo as well. No real abnormality vestibular-system wise. I also have a corresponding neurological issue called "visual snow". This all started after I was overmedicated on T4 medication (for my thyroid). Early on during the year, a month or two after my overdose episode, I could not even handle alcohol (one sip would make me instantly dizzy). These days, I can have a drink or two without any 'adverse' effects.. adverse as in beyond you would normally expect from typical alcohol consumption lol. I am currently still eating gluten (not a dx celiac) but believe I am gluten-intolerant; trying to wean myself off it in the new year. I have been lactose intolerant since I was 12 and find that now, I get some sort of weird "ear inflammation" whenever I ingest dairy. This has never happened before. If I have a little bit of a dairy dessert, I will find that shortly after that I get 'popping' in my ear... I will swallow, and my ears will pop several times. This goes on for a while before subsiding. Anyone else have this?


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Canadian undergraduate student in 3rd year, studying Psychology and Speech Communication. Hoping to go into rehabilitation sciences!  B)

  

Dx with: 

Hashimoto's thyroiditis - 22/09/12

benign paroxysmal positional vertigo (bppv) - 18/05/13

irritable bowel syndrome - 21/06/13 

HLA-DQ8 gene ~ heterozygous (moderate risk for celiac) - 29/11/13

 

-> underwent a colonoscopy on 24/08/13, showed mild focal colitis + lymphoid hyperplasia (aka inflammation) in terminal ileum


#40 Pegleg84

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Posted 31 December 2013 - 09:33 AM

Ooh look, one of my topics was revived! This is a pretty old post, but it does contain some good information, so maybe ok to keep going. Also interesting to look back and remember what I was going through a couple years ago. I was CONVINCED something was wrong with my inner ear. After all the tests came back negative, in 2012 I worked on my diet instead. I cut back on salt, which helped, cut out dairy, which helped a lot more, and then eventually had to cut out soy as well, which REALLY helped! I now believe that my "vertigo" dizzies are a symptom of my sinuses/ear canal filling up when I eat dairy/soy/too much salt. I still get it a little bit on occasion, but not nearly as bad as it used to be. Soy is now the bane of my existence, even harder to avoid than gluten, and the symptoms hit me right away (though don't last as long). Dairy is less bad, as in I can handle tiny bits every so often (a bit of butter in something, or a tiny piece of cheese), but it gets my sinuses going (that full-ear feeling). I haven't been as strict with the low-salt lately, but if I have anything too salty, MAN do I feel it.

 

As for the tinnitus, it's never gone away, but hasn't gotten any worse and i don't notice it as much.

In any case, I now know that my issues is a sinus problem as a symptom of my intolerances, not an inner ear issue


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~ 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.


#41 Jonvon

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Posted 31 December 2013 - 12:16 PM

Hello,

Sorry for the long post.

I'm new to this. I has experienced some lightheadedness at time last summer. It made me nervous as the summer went on, I decided to quick smoking cold turkey September 22. I smoked for 20 years. The quitting went well. About a month later I was more dizzy. The doctor blew it off, along with my heart burn, tingly toes and fingers and intermittent diarrhea. After a second visit he put me on a antibiotic for a "possible ear infection". Then thing became worse: sever dizziness, ear pressure and tinnitus. I also had non stop diarrhea. I should have never takin the amoxiciline. My fiancée sent me to the emergency room, that doctor ordered a MRI, visit to a ENT and neurologist. What happened! I was healthy maybe a lite overweight 2 months before this.

We'll my primary doctor did not like me going to the other doctors and stated you are perfectly healthy and maybe had the start of meniers.

Neurologist suggested B12 deficiency. Turns out my dad has this and gets shoots. Not the answer for me my B12 is fine. Each appointments is one month away.

ENT and audiologist. Dizzy chair test and ear tests revealed nothing. They do think it is inner ear related.

I found one guy posting about dizziness much like mine and after six months it turned out to be celiac. I read the Mayo clinic symptoms and it mentioned: Nervous system injury, including numbness and tingling in the feet and hands, and possible problems with balance. I also have some rashes on my butt, elbow and shoulder. The rashes aren't supper bad or supper itchy. My teeth are dis colored which is mention on the university of chicagos web site.

I have cut gluten out of my diet. Maybe a bad move before it can get in to a gastro doctor. I did not want to wait because I have been dizzy for 3 months now and want relief ASAP so I can help my family and play more with the kids. After being gluten free I might have some slight improvement in my dizziness, brain fog has improved greatly, heart burn gone, stomach still very burrpy at times. I have lost about 22 lbs since mid October (lucky it have some pounds to spare). I do eat and never go feeling hungry.

Does anyone know how long it would take the dizziness to get better? Any thoughts on this story?

Thanks and happy new year
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#42 GFinDC

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Posted 31 December 2013 - 10:11 PM

Hi Jonvon,

 

Sorry, I have no idea on the recovery time for balance problems related to the ear.  Celiac disease can cause ( and often does cause) malabsorption of nutrients, which can lead to problem throughout the body.  So a wide range of symptoms can appear in  people.  The thing to do is keep 100% away from gluten and see if things improve over the course of a year.  Sometimes it take s a year or more for symptoms to improve.  But the improvement is worth waiting for.


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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

#43 Kamma

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Posted 02 January 2014 - 10:03 PM

Hello,

Sorry for the long post.

I'm new to this. I has experienced some lightheadedness at time last summer. It made me nervous as the summer went on, I decided to quick smoking cold turkey September 22. I smoked for 20 years. The quitting went well. About a month later I was more dizzy. The doctor blew it off, along with my heart burn, tingly toes and fingers and intermittent diarrhea. After a second visit he put me on a antibiotic for a "possible ear infection". Then thing became worse: sever dizziness, ear pressure and tinnitus. I also had non stop diarrhea. I should have never takin the amoxiciline. My fiancée sent me to the emergency room, that doctor ordered a MRI, visit to a ENT and neurologist. What happened! I was healthy maybe a lite overweight 2 months before this.

We'll my primary doctor did not like me going to the other doctors and stated you are perfectly healthy and maybe had the start of meniers.

Neurologist suggested B12 deficiency. Turns out my dad has this and gets shoots. Not the answer for me my B12 is fine. Each appointments is one month away.

ENT and audiologist. Dizzy chair test and ear tests revealed nothing. They do think it is inner ear related.

I found one guy posting about dizziness much like mine and after six months it turned out to be celiac. I read the Mayo clinic symptoms and it mentioned: Nervous system injury, including numbness and tingling in the feet and hands, and possible problems with balance. I also have some rashes on my butt, elbow and shoulder. The rashes aren't supper bad or supper itchy. My teeth are dis colored which is mention on the university of chicagos web site.

I have cut gluten out of my diet. Maybe a bad move before it can get in to a gastro doctor. I did not want to wait because I have been dizzy for 3 months now and want relief ASAP so I can help my family and play more with the kids. After being gluten free I might have some slight improvement in my dizziness, brain fog has improved greatly, heart burn gone, stomach still very burrpy at times. I have lost about 22 lbs since mid October (lucky it have some pounds to spare). I do eat and never go feeling hungry.

Does anyone know how long it would take the dizziness to get better? Any thoughts on this story?

Thanks and happy new year

 

Jonvon,

 

Check out this site for information / research papers of Dr. Marios Hadjivassilliou, a U.K. neurologist and the leading expert on Gluten Ataxia.  https://sites.google.../jccglutenfree/

 

After being diagnosed with gluten ataxia a few years ago, my vertigo took months to resolve on a strict gluten free diet (i.e. I don't eat any 'gluten free' products at all and stick to eating vegetables, legumes, fruit and some fish).  The brain fog slowly disappeared as well.  After about a year I felt 'normal' for the most part but still have seizures and/or vertigo if I inadvertently get glutened.

 

It's not a quick fix (sorry!) and Dr. Hadjivassilliou recommends to be very strict in what you eat as it appears by the research that gluten ataxia/neuro people are extremely sensitive to the lower amounts of gluten that can be found in 'gluten free' products.

 

Please note that if you do have gluten ataxia and got a celiac test done, it will most likely be negative as gluten ataxia actually involves a different enzyme than what the traditional celiac panel tests for.  The celiac panels only test for ttg 3 and ttg 2. (ttg is Tissue Transglutimanase enzyme) Gluten ataxia is caused by an antibody reaction to ttg 6.  There are tests being developed by Dr. Hadjivassilliou but they are not on the market yet.

 

The best indicator at this point if you have gluten ataxia is to go gluten free and if the symptoms resolve chances are you have it.

 

Take care,

Kamma

PS - Prior to getting my diagnose, I went through three years of increasing dizziness/vertigo, stumbling, falling/walking like a drunk and seizures. The neurologist kept sending me to all these other experts for testing which included the ENT/Vesitibular Testing which came back normal.  


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#44 GladGirl

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Posted 05 January 2014 - 06:10 AM

Hi, All,

 

I have not been on this system for some time...basically it is due to such unusual changes, I still find it difficult to understand.  I was diagnosed through Hematology for Celiac Disease (latent) 3 years ago, became gluten free and so many things got better!  My liver enzymes became normal again, my frozen shoulder was painless again, and I lost weight which I needed to lose.  However...I have learned that lesson of having one autoimmune diagnosis can lead to more....

 

I developed tinnitus in my left ear over 12 years ago, met with an ENT who did some tests in his office with the "fork tuning" and a few other types, and then he ordered an MRI because he said I may have a brain tumor called Acoustic Neuroma.  I bought a copy of that MRI from the hosptial and kept it...there was no tumor, but I was concerned.  Glad I did!  This I will add to another topic.

 

My most recent experience took me to the Mayo Clinic and I wanted to give you this information I have thus far concerning my tinnitus and vertigo:

 

Problem List

Condition

Effective Dates

Status

Health Status

Informant

Loss Hearing Mixed Conduct Sensorineural(Confirmed)

 

Active

   

Allergies, Adverse Reactions, Alerts

Substance

Reaction

Severity

Status

Glutens

Arthritic pain

Severe

Active

 

This is not going to go away according to my Neuro-Surgeon and neurologist.  Not even being gluten free will/has changed this.  They suggested possible hearing aids to assist, but I have far too many other concerns right now...this will keep in pending.  I deal with my most debillitating time to sleep at night by having my husband turn the TV on with sound...and then I can fall asleep.  Other than that, I have become used to this and from time to time it will vary in intensity.  Take care all, will post on another topic for what is going on regarding other immune system problems.  Gladgirl


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#45 cristiana

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Posted 06 January 2014 - 08:34 AM

Dizziness/vertigo/imbalance can be such a difficult thing to live with but what interests me is that judging by the websites devoted to the subject it is a problem that blights the lives of many non-celiacs and often there is no formal diagnosis made - or after a while, a different diagnosis is given.

 

My problems started in July three months into the gluten-free diet.  It is strange but when I  mentioned these feelings to various healthcare professionals as possibly having something to do with celiac no one has ever really pursued that tack.  However when in October I started to get tinnitus in one ear, and a feeling of fullness in both, I was referred to an ENT who did lots of tests and thought that as I was encountering feelings of imbalance since July, when I also picked up something too heavy and hurt my neck and lower back, that it could be a problem with my neck rather than my ears.  A follow up MRI scan of my head was fine, but one of my neck revealed bulging discs and a thyroid problem, so perhaps the problems are in my neck after all.    The tinnitus has almost gone now - but I am glad that I had it if it meant I could have the investigations to rule out other things.

 

My question is - if one has ataxia, would it necessarily shown up on my MRI scan of my brain?


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