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

Meniere's Disease
0

16 posts in this topic

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!

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




According to http://www.menieres.org/forum/index.php/topic,25945.0.html:

"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."

0

Share this post


Link to post
Share on other sites

You might want to read the whole thread (and others) at http://www.menieres.org/forum/index.php/topic,25945.0.html, 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.

0

Share this post


Link to post
Share on other sites

You might want to read the whole thread (and others) at http://www.menieres.org/forum/index.php/topic,25945.0.html, 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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.....

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
      103,874
    • Total Posts
      919,420
  • Topics

  • Posts

    • So I've been glutened....
      Yeah I did all the bone broths and sauerkraut after my challenge. Although I wasn't very good at making sauerkraut... Its summer here now so I've eased up on the bone boiling, plus my local butcher is struggling to obtain them. As you say healing to the point where microscopic cross contamination doesn't get you would be a big win.  I was ok with coffee until last few days. I drank decaff black and would have several cups a day without issue. I'll be gutted if I can't handle it any more. I hadn't realised you could get gluten-free miso soup. Will have to look for that    
    • So I've been glutened....
      Coffee is a no-no for me!  I actually gave up coffee since my diagnosis back on 2/2016.  I was diagnosed by a biopsy in the stomach...no villi.   Coffee is a stimulant to the GI system and it really irritates your GI when you are having a flare up.  I was tested by stools and was informed I barely had good bacteria in my gut which is typically for people with celiac. I went on a high dose of probiotic (just started) twice a day, multivitamin, lots of fermented vegetables like sauerkraut, kimchi, miso soup and tons of bone broth.  I am going to a local farm today to pick up organic bones to make my broth.  I am so desperate to heal my gut, not to introduce gluten but to be able to tolerate an exposure without being knocked out by it....Eat very light, I stick to vegetable juice, resistance starch food such as banana, apples, potatoes boiled until my diarrhea subsides.  I am currently in a flare up stage; did something and I have been glutened I am on day 7 and my symptoms peak after a few days, around day 4-5 and it last a few days of Diarrhea, nausea, sensation of feeling full, back pain in the rib cage on left side and hip/lower back pain on left side.  Its horrible!  I feel weak right now due to the diarrhea and since I am not hungry it makes it worse.  Hope this gets better.
    • DNA Testing
      I got the print out and took it to my new dr because what my RA was saying didn't seem to add up.  When I pressed him for more info, he said I didn't have any of the markers. Turns out he read the test wrong!  Since then, my new doc also questioned all my previous bloodwork and asked why I hadn't been told that my counts were really low or tested for ferritin levels. My ferritin was at 10, so, yeah, 4 other Dr's missed anemia on my labs. It's been frustrating to say the least, but I am finally feeling a little bit hopeful with my new primary doc. She's just referred me to a specialist focusing on celiac. Considering my former gp told me "that whole celiac thing is just a fad", I'm feeling a bit more secure. 
    • So I've been glutened....
      Thanks for the kind responses  Last night I went out and had a black coffee, non decaf.   Big mistake... I started getting gas almost immediately and it went on for the rest of the evening. It seems like anything which might annoy my stomach at the moment results in churning and an uncomfortable feeling. the weird thing is that I ate a huge lunch including gluten-free bread earlier with no effects whatsoever. Just as well as I couldn't face food last night and am not enthused with breakfast now.  C i think I'll dig out some probiotics and try and eat simply for a few days and hope things settle down. I'm just worried that something has changed and this is the new normal... That would suck...  
    • Toblerone
      It's on the safe list here in the uk and I eat it without a problem. theres also a really nice almondy toblerone cake available now. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,909
    • Most Online
      1,763

    Newest Member
    Fourpeople
    Joined