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Update On My Dizziness

glutout

By glutout
in Coping with Celiac Disease

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glutout Rookie
glutout
Posted

Hi all. I posted awhile back on some dizziness issues I have been having. I went to see an ENT to have my ears checked or to rule out issues with my jaws since I do occassional grind my teeth. Well, according to the doctor it is not my jaws causing the prob lem and he does not classify my symptom as "dizziness". It is more of an unsteadiness. He had me close my eyes and I could not stand up without leaning over, nor could I stand and lift one leg with my eyes closed! That is so not like me. I have had good balance my whole life with the exception of the last 2 years. He asked me if I knew what could be wrong with me??? I told him, no that's why I came to you!!! :o After looking into it,I wonder if this could be more of an ataxia problem, and if so, why is it getting worse when I have been gluten free for a year and a half??? Just thought I would update in case anyone is experiencing the same thing!!! :D

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Reba32 Rookie
Reba32
Posted

Yes, I'm experiencing much the same thing, but I have increasing dizziness on-going for the past 10 months or so. I've seen 2 ENTs and neither one of them have even the slightest inkling of what's wrong with me. They just keep sending me for more tests. There's nothing wrong with my inner ears, no infection, no evidence of damage at all.

I am convinced it's another auto-immune disease, I just don't know which. So I shall just keep going back to my GP/PCP until we figure it out. Which is soon I hope. Yesterday I was so dizzy and nauseous I thought I was going to puke all over myself.

AVR1962 Collaborator
AVR1962
Posted

Glutout & Reba32, do you both find you are more dizzy (off-balance) when you have been glutened? Does it then slowly fade? Are you repeatedly getting glutened? The reason I ask is this has been one of my hardest symptoms to get rid of for me as well. High fructose does the very same thing to me. It will take me 3 weeks before I feel like I am not floating, my vertigo gets worse during these times. The only things with me is I don't think in 5 months I have made it past 3 weeks without getting glutened somehow so this has not passed entirely for me. I know that any alcohol makes it worse but that is the only association I have made. I was reading today and decided to increase my B12 and magnesium, increased my iron earlier this week.

AVR1962 Collaborator
AVR1962
Posted

I found this in a search, one paragraph from the link below:

Cerebellar ataxias including the genetic ataxias however do not have any definitive treatments. Some of the disorders have been reported to be slowed by taking antioxidants such as vitamins A, E, B12, idebenone, and Coenzyme Q10. Vitamin E is the treatment of choice in ataxia caused by vitamin E deficiency. Vitamin B12 or copper supplements are used to treat ataxia related to vitamin B12 or copper deficiency respectively. When associated with parkinsonism, such as seen in the cerebellar form of multiple system atrophy (previous referred to as olivopontocerebellar atrophy), levodopa may be helpful.

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glutout Rookie
glutout
Posted
  • Author

For me, it is there all the time, just in varying degrees--I do not believe I have been glutened. I have been complaining about it for years. I feel I need to get my vitamin levels checked, but do not know which ones are accurate and the best type to get???

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