Meniere's Disease

[melikamaui]

I haven't found anything about this online so I thought I'd check with the experts here. Has anyone heard of a connection between Meniere's Disease and Celiac Disease?

Thanks!

[ElitaSue]

I was tested for Meiniere's by an ENT, but (and I almost say this sadly) I didn't have it, almost wish I did. He told me that my dizziness and Ataxia were neurological and it wasn't my ears. I see an Neurologist. Ataxia, dizziness, and neurological problems are pretty common for us. I also have epilepsy.

Good luck.

[melikamaui]

ElitaSue, do you have any ear issues? Pressure, pain, etc?

[beebs]

Before I went gluten-free, I had chronic middle ear infections, all the time, sometimes 5 a year and was anit bs all the time, a fair few perforated ear drums etcs. I've been gluten-free for a year and 4 months now and no infections. So fingers crossed.

I've read studies that showed a connection between Coeliac and inner ear problems.

[melikamaui]

Before I went gluten-free, I had chronic middle ear infections, all the time, sometimes 5 a year and was anit bs all the time, a fair few perforated ear drums etcs. I've been gluten-free for a year and 4 months now and no infections. So fingers crossed.

I've read studies that showed a connection between Coeliac and inner ear problems.

You sound just like me. Though, for the last year I kept thinking I had ear infections and would go to the doctor and she couldn't see anything. That led me to the specialists which led me to Meniere's. Do you remember where you saw those studies on Celiac and inner ear problems? I'd love to read them. I just came from my ear doc and he is pretty convinced it's Meniere's but is afraid to diagnose me because "Meniere's is so horrible". Yikes. He wants me to go for a second opinion.

I should also add that going gluten-free did absolutely nothing to help my ears. Zip. Zero. Zilch. I've been gluten-free for a year and a half now. My ears have been worse than ever for the last year.

[Fiddle-Faddle]

According to Open Original Shared Link

"Many people here have found that certain foods trigger Meniere's symptoms. The most common offending food seems to be wheat. The protein in wheat is called gluten, and it is also found in other grains (barley, rye, and oats).

Celiac Disease is an autoimmune disorder triggered by gluten, and increasingly common symptoms reported in celiac forums include tinnitus, dizziness, and hearing loss. The anecdotal evidence indicates that removing gluten from the diet eliminates symptoms. Celiac Disease has historically been defined by the results of an intestinal biopsy, but the trend is now to diagnose it by blood work, which looks for antibodies to gluten as well as endomysial antibodies (andtibodies against oneself). Celiac Disease and gluten intolerance are often used interchangeably to describe the same set of symptoms; there is much debate on whether gluten intolerance is simply early-stage celiac or whether it is a separate condition, but the treatment is the same, either way--a gluten-free diet.

Celiac disease is one of the leading causes of intestinal malabsorption, and is linked with many other common autoimmune disorders, including thyroid disease, diabetes, rheumatoid arthritis, lupus, and MS. Vitamin deficiencies are common to all of them.

While celiac is noted to CAUSE vitamin deficiencies, it is also possible that vitamin D deficiency likely plays a role in causing celiac, and perhaps other autoimmune conditions as well."

[Fiddle-Faddle]

You might want to read the whole thread (and others) at Open Original Shared Link as there are other ideas there that may be helpful for your dizziness and ataxia.

One other idea mentioned there is B12 deficiency.

A common symptom of celiac is acid reflux, which is almost always treated by long-term Prilosec. Long-term Prilosec use causes B12 deficiency--which can cause the same symptoms as Meniere's. And with intestinal malabsorption, which is practically the rule in celiac disease, many vitamin deficiencies are common, including B12 deficiency, even when Prilosec isn't used.

[melikamaui]

You might want to read the whole thread (and others) at Open Original Shared Link as there are other ideas there that may be helpful for your dizziness and ataxia.

One other idea mentioned there is B12 deficiency.

A common symptom of celiac is acid reflux, which is almost always treated by long-term Prilosec. Long-term Prilosec use causes B12 deficiency--which can cause the same symptoms as Meniere's. And with intestinal malabsorption, which is practically the rule in celiac disease, many vitamin deficiencies are common, including B12 deficiency, even when Prilosec isn't used.

Thanks for the links! I'll be sure to check them out. I had a full work-up recently, no vitamin deficiencies at all. And I've never used Prilosec so that isn't an issue either. My doc is convinced it's Meniere's but he wants me to go for a second opinion and hopefully prove him wrong.

[Fiddle-Faddle]

Do full workups now include vitamin deficiency testing? Wow, that is really good news.

Every "full workup" I've ever had included hundreds of dollars of blood tests--and the only deficiency ever looked for was anemia.

If your doctor is smart enough to be looking for vitamin deficiencies, (s)he is likely smart enough to have looked for thyroid problems, which would have been my next suggestion.

[melikamaui]

Do full workups now include vitamin deficiency testing? Wow, that is really good news.

Every "full workup" I've ever had included hundreds of dollars of blood tests--and the only deficiency ever looked for was anemia.

If your doctor is smart enough to be looking for vitamin deficiencies, (s)he is likely smart enough to have looked for thyroid problems, which would have been my next suggestion.

I don't see a regular doc. I see a holistic DO who doesn't just do regular work ups. She likes to see the whole picture and is therefore, very thorough. I am very lucky to have found her. And yes, she did do thryoid checks too.

edited to add: My ear doc is different than my DO. My DO referred me to the ear guy when she couldn't figure out what was going on. As I was reading my posts I realized that point wasn't clear.

[Kamma]

I spent two years being shuffled from one ear specialist to another. One thought menieres after they ruled out that one condition where there is a hole in your vestibular canals (can't remember the name of the condition), one thought it was migrained induced vertigo (even though I don't have migraine headaches), and one thought i had Tullio's syndrome which is sound induced seizures.

I have the ringing and pain in my ears along with the vertigo but don't have hearing loss. So it's not Meneire's. After three months of watching what I eat, I notice the ringing, pain and vertigo start up soon after I have accidentally ingested gluten.

[JaneWhoLovesRain]

Melikamaui - May I ask what your symptoms are that make your doctor think you have Meniere's? I don't see where you mention vertigo and that is the classic symptom (though some will argue that and say if you have loss of hearing loss w/out vertigo, you have "atypical" Meniere's. Along with the vertigo you also need hearing loss, fullness, pressure and tinnitus.

I started getting severe vertigo attacks almost 5 years ago and by severe I mean hours long and unable to move my head a milimeter without the vertigo getting much worse, an extremely distressing condition. In between attacks I suffer from extreme motion sensitivity, motion sickness feeling 24 hours a day and other related vestibular symptoms. I was told I had Meniere's, also told vestibular migraine and BPPV and labyrinthis and a "delicate vestibular system." Also, I hit my head a month before the vertigo started so maybe that is what it is from. No one really knows for sure. I've found dealing with doctors is very frustrating as each one tells me somethting different. I used to hang out a lot at menieres dot org and there is often talk there about gluten intolerance and vertigo. Many have found relief after giving up gluten.

I totally resisted the idea, saying I've been a big bread eater my whole life, that can't possibly be what is wrong with me. But I gave it a shot - gave up gluten along with dairy, nuts, chocolate and more. By this time I already was eating an anti-meniere's diet as well as anti-migraine. Not much food left for me to enjoy. About a week after I went gluten free I was sitting at my work desk and all of the sudden I realized I didn't feel motion sick. It was so weird. it was the first time in years and years and years I didn't have that horrible feeling.

Was it giving up gluten that did that? I really don't know for sure. Unfortunately the feeling didn't last long and later that day I was feeling poorly again. However, I can say that my vertigo attacks have greatly decreased since going gluten free, and my generaly feeling of always being motion sick has also decreased and I continue to have episodes where I actually feel good. I'm not 100% gluten free, more like 98% as I most likely get cross contamination.

I have not been officially diagnosed with celiac or gluten intolerance or gluten allergy. Earlier this year I broke out in a terrible itchy rash that looks like chicken pox and in searching that I came upon dermitis herpetiformis. I recently had a biopsy for this and am awaiting the results. In a way, it will be a relief to me if that comes out positive.

There isn't much literture on the vertigo gluten connection and most doctors do not think it is a symptom of celiac. There is some info on gluten ataxia and while ataxia and vertigo are realated they just aren't the same.

Will you be having tests to rule out or confirm Meniere's?

[Kelleybean]

Hi - my husband (not celiac) has Meniere's. The biggest suggestion that the doctor had for him was to go VERY low sodium.

[melikamaui]

Melikamaui - May I ask what your symptoms are that make your doctor think you have Meniere's? I don't see where you mention vertigo and that is the classic symptom (though some will argue that and say if you have loss of hearing loss w/out vertigo, you have "atypical" Meniere's. Along with the vertigo you also need hearing loss, fullness, pressure and tinnitus.

I started getting severe vertigo attacks almost 5 years ago and by severe I mean hours long and unable to move my head a milimeter without the vertigo getting much worse, an extremely distressing condition. In between attacks I suffer from extreme motion sensitivity, motion sickness feeling 24 hours a day and other related vestibular symptoms. I was told I had Meniere's, also told vestibular migraine and BPPV and labyrinthis and a "delicate vestibular system." Also, I hit my head a month before the vertigo started so maybe that is what it is from. No one really knows for sure. I've found dealing with doctors is very frustrating as each one tells me somethting different. I used to hang out a lot at menieres dot org and there is often talk there about gluten intolerance and vertigo. Many have found relief after giving up gluten.

I totally resisted the idea, saying I've been a big bread eater my whole life, that can't possibly be what is wrong with me. But I gave it a shot - gave up gluten along with dairy, nuts, chocolate and more. By this time I already was eating an anti-meniere's diet as well as anti-migraine. Not much food left for me to enjoy. About a week after I went gluten free I was sitting at my work desk and all of the sudden I realized I didn't feel motion sick. It was so weird. it was the first time in years and years and years I didn't have that horrible feeling.

Was it giving up gluten that did that? I really don't know for sure. Unfortunately the feeling didn't last long and later that day I was feeling poorly again. However, I can say that my vertigo attacks have greatly decreased since going gluten free, and my generaly feeling of always being motion sick has also decreased and I continue to have episodes where I actually feel good. I'm not 100% gluten free, more like 98% as I most likely get cross contamination.

I have not been officially diagnosed with celiac or gluten intolerance or gluten allergy. Earlier this year I broke out in a terrible itchy rash that looks like chicken pox and in searching that I came upon dermitis herpetiformis. I recently had a biopsy for this and am awaiting the results. In a way, it will be a relief to me if that comes out positive.

There isn't much literture on the vertigo gluten connection and most doctors do not think it is a symptom of celiac. There is some info on gluten ataxia and while ataxia and vertigo are realated they just aren't the same.

Will you be having tests to rule out or confirm Meniere's?

Thanks so much for your reply. Yes, I have terrible bouts of vertigo, and that coupled with the other symptoms (ear pain, pressure, tinnitus and hearing loss) is what led to the Meniere's diagnosis. My doctor diagnosed me officially a week or so ago. My symptoms did not improve on the gluten-free diet. I've been 100% gluten-free for over a year and a half and it hasn't helped my Meniere's one bit. I hope you are able to get a correct diagnosis to help you feel good about the gluten-free diet. It's such a complicated process! It took me 38 years to get diagnosed with celiac disease!

[melikamaui]

Hi - my husband (not celiac) has Meniere's. The biggest suggestion that the doctor had for him was to go VERY low sodium.

I'm on it. I was already pretty low sodium, but not low enough. Yesterday I managed to eat less than 500 grams.

[Sunny600]

I have Meniere's Disease, but it's not really bad at all--mild (but annoying) hearing loss in one ear, tinnitus, and occasional, mild dizziness. I take a diuretic, which helps a lot, and try to eat a low-salt diet, which helps a lot, but not always.

I have only recently gone Gluten-free, and I will be interested to see if that has any effect.....