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Ruthie13

Crazy Balance Thing Going On...

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I don't know if your symptoms are gluten-related or not, but google the term BPPV (benign paroxysmal positional vertigo), and see if this sounds like what you are experiencing. If so, ask your family doctor to refer you to an Ear, Nose, Throat specialist (otolaryngologist) if it doesn't clear up.

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It could be. I had problems with constantly clogged sinuses (like, since childhood and I'm 31 now) before going gluten-free, and that caused a lot of problems with vertigo. I didn't even realize how big of a problem it was until I went totally gluten-free and it cleared up.

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What you are likely experiencing is gluten ataxia. It differs from vertigo in that you wouldn't have the 'spinning' sensation that often goes with vertigo. You described it perfectly IMHO when you described it as feeling like you are walking on a boat. I have had it since childhood. Mine got so bad I couldn't walk unaided by the time I was diagnosed. The good news is that it is likely the CC you are living with that is causing it. Once you are able to stop the CC it should resolve.

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I usually get the off kilter problem in the Spring...I think mine is due to fluid in the ears. My doc always checks my ears and asks me what I am using as nose spray to get it drained and I am not using anything because the sprays all make me feel weird. That could have been from celiac disease though, now I am on a gluten free diet, and once in a while I get glutened but the fluid in my ears doesn't seem to go away, I am still getting sinus headaches. You might want to get your sinuses looked at by your doc to just rule everything out.

I have experienced a problem when I am sitting that about once a month I feel like I am falling forward and I end up grabbing whatever is near me so I don't actually fall. Of course I scare my family and they wonder what just happened so I just say the usual, I have had and still have some anemias from Celiac Disease that I am still working on trying to build back up like my iron count, but not sure if it is that or just allergies. I wonder if that is ataxia( I think that is how its spelled) from Celiac that I have experienced for a long time.

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Yes, the feeling like you are walking on a boat is exactly what I experience. I think it is the worse part of being glutened. I can deal with gas and other issues, but the dizziness is unbearable. I think for me it is the stress that gluten puts on my body, because other things that cause a stress on my body (food allergies or mental stresses) tend to make me dizzy too.

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wow great to know that I'm not going crazy!!..this forum is great for that, just to be able to connect with others experiencing similar things. If I get the chance I'll get checked out by the doc just to see it isn't something else but hopefully it'll disappear once I get my diet under control again. Thanks!

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wow great to know that I'm not going crazy!!..this forum is great for that, just to be able to connect with others experiencing similar things. If I get the chance I'll get checked out by the doc just to see it isn't something else but hopefully it'll disappear once I get my diet under control again. Thanks!

I think we've all felt from time to time as though we're crazy and the only person out there experiencing such things. But, no, you're NOT crazy...

In addition to mild to moderate GI symptoms, I get peripheral neuropathy (burning/tingling in toes/feet/lower legs & hands) and the same off-kilter issue you have when I'm glutened. I find that I have a tendency to veer to the right when walking and it takes me longer than normal to adjust to sudden, significant position changes (e.g. standing after sitting or lying down).

I like your description about how your symptoms feel like you're walking on the deck of a rolling ship. I described it as a sensation that I was walking on a floor that was warped and buckled but your's is a much clearer description. When I get that "rolling ship" sensation, it seems as though I can't control my legs & I find that I do a lot of tripping and the veering thing.

But it's the way you describe how it seems that there's a delay where you have to "wait for the back of your head to catch up" that really stood out to me. I experience something that's somewhat similar. Before I was diagnosed, I wasn't sure how to explain what I was feeling to my doctor other than to say that it felt as though I was having what I thought an out-of-body experience might feel like...I knew in my mind that my physical body was walking on the floor but it felt like some "invisible, shadow part" of me was simultaneously walking 6 or 8 inches off the floor and a step or two behind my body. And don't think I didn't worry about being thought of as crazy with a description like that!! LOL.

Take heart, though. Since going gluten-free, the only time I have those unsettling symptoms is the unusual occasion when I get glutened. It sounds as though your cross-contamination issue is at the root of this and I'd bet that the symptoms will disappear when you're able to fix that problem.

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i would say its got something to do with gluten ... ataxia is an issue for me ... noticed slight improvement(after 3.5 months gluten free) and now with my gluten challenge it happens frequently. again. (1 more week of gluten and i get my biopsy. i hope this has been worth it as far as the biopsy goes).

anyway, do your best to stay away from it and hopefully after awhile you will notice improvement! :)

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