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Eqilibrium Problems

deesmith

By deesmith
in Coping with Celiac Disease

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deesmith Apprentice
deesmith
Posted

Hope some of you out there can help me with this. I've been gluten-free since maybe Nov/Dec (it took a couple of months to get the hang if it). But my son's home from college now and it's the first time we have gluten in the kitchen. I've been screwing up or having lots of cc issues alot lately.

So, my question is about equilibrium problems. Whenever I'm glutened lately I have problems with my balance. I used to a little when I was really sick, before going gluten free. But this is getting worse. I've walked into walls, etc.

When I had my blood work done in April my B12 levels were fine. I was surprised because I thought maybe it was because of that.

Any ideas what causes this? Any suggestions-- besides nit getting glutened?

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Lisa Mentor
Lisa
Posted
Hope some of you out there can help me with this. I've been gluten-free since maybe Nov/Dec (it took a couple of months to get the hang if it). But my son's home from college now and it's the first time we have gluten in the kitchen. I've been screwing up or having lots of cc issues alot lately.

So, my question is about equilibrium problems. Whenever I'm glutened lately I have problems with my balance. I used to a little when I was really sick, before going gluten free. But this is getting worse. I've walked into walls, etc.

When I had my blood work done in April my B12 levels were fine. I was surprised because I thought maybe it was because of that.

Any ideas what causes this? Any suggestions-- besides nit getting glutened?

Yup, that's me. It cleared up with some b-12 injections and now I take them sublinqually daily (under the tongue). If you take daily prescribed antacids, it also depletes the absorption of b-12 in your system.

You may need to have some blood work-up and make sure everything is in the normal range.

Nancym Enthusiast
Nancym
Posted

Define "fine". :) You can have neurological symptoms with B12 in range but lowish. YOu can't really OD on B12, get some sublingual supplements and see if that helps. Also, I'm reading the ALA helps with diabetic neuropathy perhaps it'd help with gluten issues too.

rinne Apprentice
rinne
Posted
....

When I had my blood work done in April my B12 levels were fine. I was surprised because I thought maybe it was because of that.

....

Where were your B12 levels in April?

I ask because my doctor told me my B12 levels were fine but when I investigated I learned that they were in fact very low. I was having the problems you describe and they cleared up with shots and the sublinguals.

The copy of my tests I got had a chart on it that showed B12 levels anywhere between 178 and 778 (approximately) as acceptable. Mine were at 228, that is very low.

Hope you feel better soon. :)

deesmith Apprentice
deesmith
Posted
  • Author
Where were your B12 levels in April?

I ask because my doctor told me my B12 levels were fine but when I investigated I learned that they were in fact very low. I was having the problems you describe and they cleared up with shots and the sublinguals.

The copy of my tests I got had a chart on it that showed B12 levels anywhere between 178 and 778 (approximately) as acceptable. Mine were at 228, that is very low.

Hope you feel better soon. :)

Thank you. This helps alot. Mine were 366. Just show you'll know, the lab the Celiac Center used states the reference levels are 279 to 996. So, by this lab, yours is way too low!

rinne Apprentice
rinne
Posted
Thank you. This helps alot. Mine were 366. Just show you'll know, the lab the Celiac Center used states the reference levels are 279 to 996. So, by this lab, yours is way too low!

I've heard anything below 500 is reason for concern.

Interesting about the chart being different. ;) Even so yours are pretty low. :(

It is like the chart is designed only to show a critical situation as critical but there is a long way down before it gets to that point.

If you can see a naturapath they give the methyl B shots which are better for you than the Cyano B shots but if you can only get the Cyano they are better than no B at all.

After my first shot I literally bounced, danced around the house, I couldn't believe how much energy it gave me. :) I think it is time for another one.

sherryGF Newbie
sherryGF
Posted

Dee, I've been experiencing some intermittent ataxia (balance problems) for the past several years too, and have addressed it with several of my physicians. I get tired of trying to laugh it off (I've gotta stop drnking before noon, etc) when others make comments! There's been some recent research on the neurological effects of Celiac disease that some people experience, with one of the symptoms being ataxia. I've been gluten-free for 7 years, and maintain a strict gluten-free diet, but still "walk into walls!". It was once thought that these neurological symptoms disappeared once the person went gluten-free, however, the newest research is revealing that often once the damage is done, it's permanent. Hopefully, this is not your underlying problem, however, it always good to include all possibilities in a differential diagnosis! Good luck!

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deesmith Apprentice
deesmith
Posted
  • Author
Dee, I've been experiencing some intermittent ataxia (balance problems) for the past several years too, and have addressed it with several of my physicians. I get tired of trying to laugh it off (I've gotta stop drnking before noon, etc) when others make comments! There's been some recent research on the neurological effects of Celiac disease that some people experience, with one of the symptoms being ataxia. I've been gluten-free for 7 years, and maintain a strict gluten-free diet, but still "walk into walls!". It was once thought that these neurological symptoms disappeared once the person went gluten-free, however, the newest research is revealing that often once the damage is done, it's permanent. Hopefully, this is not your underlying problem, however, it always good to include all possibilities in a differential diagnosis! Good luck!

Hi, Sherry. Thanks for this informative reply. I think you might be right. I've heard that some of the neurological symptoms are from a certain gene. I know my mom had this same problem too. She kept walking around like she was drunk-- just like you said. (She never drank in her life) I'm going to mention it to my specialist though and see what he thinks.

thanks.

Dee

ravenwoodglass Mentor
ravenwoodglass
Posted
Dee, I've been experiencing some intermittent ataxia (balance problems) for the past several years too, and have addressed it with several of my physicians. I get tired of trying to laugh it off (I've gotta stop drnking before noon, etc) when others make comments! There's been some recent research on the neurological effects of Celiac disease that some people experience, with one of the symptoms being ataxia. I've been gluten-free for 7 years, and maintain a strict gluten-free diet, but still "walk into walls!". It was once thought that these neurological symptoms disappeared once the person went gluten-free, however, the newest research is revealing that often once the damage is done, it's permanent. Hopefully, this is not your underlying problem, however, it always good to include all possibilities in a differential diagnosis! Good luck!

Unfortunately that is the case for me. Ataxia and some other nerve damage are the only residual damage that I have now after 5 years gluten-free. The ataxia has gotten better but it has not resolved completely. It now seems to be related most to a change in visual focus. I no longer need canes to get around but going down stairs and climbing a ladder or even looking up to change a light bulb can put me off balance. When I am glutened a worsening of the atxia is one of my first signs. I did have ataxia for over 40 years though along with the resulting bright spots on MRI similar to but in the wrong place to be MS. B12 helped a great deal with my reflexes (in legs absent since childhood but now back) , parathesias and numbness but the ataxia, although less, still remains.

chatycady Explorer
chatycady
Posted

Dizziness, off balance is the first symptom I have after eating gluten. Riding in a car or any movement is difficult. Also my eyesight is poor.

I also have trouble speaking at times. My mouth will "jerk" funny. Can't explain it, but it messes up my speach

sparkles Contributor
sparkles
Posted

The B complex vitamins or lack thereof can cause lots of neurological stuff.... BUT you might look into a condition called benign paroxysmal positional vertigo. I have this. It is caused from stuff floating in your inner ear I believe.... Anyway, it has a simple cure. It requires respositioning these floaters in your ear by assuming some strange positions. I know that it sounds really weird but it is a real condition. I have it. Every once in a while, I will get really dizzy... falling over, nausea, etc. I put my head in these weird positions and low and behold, the vertigo is gone. I cannot tell when it is going to happen.... but check it out. It has nothing to do with celiac disease.

neesee Apprentice
neesee
Posted

I was biopsy diagnosed Jan. 1988. I've been gluten-free ever since. My balance gets worse every day. Stairs are starting to make me extremely anxious. I won't go near them until I steady myself and grab the handrail. Dh laughs at me when I walk down the hallway, because first I hit one wall and then the opposite. He call me bing bong. I'm not amused.

As far as I know, all my vitamin levels are where they are supposed to be.

deesmith Apprentice
deesmith
Posted
  • Author
I was biopsy diagnosed Jan. 1988. I've been gluten-free ever since. My balance gets worse every day. Stairs are starting to make me extremely anxious. I won't go near them until I steady myself and grab the handrail. Dh laughs at me when I walk down the hallway, because first I hit one wall and then the opposite. He call me bing bong. I'm not amused.

As far as I know, all my vitamin levels are where they are supposed to be.

I know what you mean about the stairs. I work on the second floor and there are stairs and an elevator. I take the elevator because the stairs make me anxious -- especially when I'm glutened. Some people at work have made some rude comments. But I don't care. I don't take the stairs if I feel uncomfortable about it.

It would be awful if the two of us were on the stairs at the same time, going in the opposite direction! We'd probably hit each other and both fall down!

:lol:

7-cody Apprentice
7-cody
Posted
Yup, that's me. It cleared up with some b-12 injections and now I take them sublinqually daily (under the tongue). If you take daily prescribed antacids, it also depletes the absorption of b-12 in your system.

You may need to have some blood work-up and make sure everything is in the normal range.

What's the easiest way to get my vitamin levels checked? Just call a normal doctor and ask him if he can do some blood tests to check my vitamin levels?

I've had blood work done before. Do you think it would be obvious to a doctor that I'm deficient, even if I wasn't being tested for that?

Thanks in advance!!

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