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Crazy Balance Thing Going On...

Ruthie13

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Ruthie13 Rookie
Ruthie13
Posted

Ok so in a nutshell I

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masterjen Explorer
masterjen
Posted

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.

i-geek Rookie
i-geek
Posted

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.

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

celiacmom2 Rookie
celiacmom2
Posted

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.

StephanieGF Rookie
StephanieGF
Posted

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.

Ruthie13 Rookie
Ruthie13
Posted
  • Author

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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BigDogz Explorer
BigDogz
Posted

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.

bluebonnet Explorer
bluebonnet
Posted

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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    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
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      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
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      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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