36 replies to this topic

[UnhappyCoeliac]

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

[UnhappyCoeliac]

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.

[GFinDC]

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.

[Kamma]

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?

[UnhappyCoeliac]

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!

[Kamma]

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?

[Reba32]

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.