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No Idea What's Going On Now

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17 replies to this topic


Jenny (AZ via TX)

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Posted 27 July 2011 - 10:00 AM

It's been a while since I've posted, but thought I would add my experience as well. I was dizzy for about a year. It started when I rolled over in bed onto my right side. This was called BPPV. Everything was spinning and was horrible. After that episode I had both vertigo and dizziness for about a year. I went to numerous doctors including eye doctor, family doctor, ENT and a neurologist.

Finally someone told me about a condition called vertical heterophoria. This is a condition where one eye sees higher than the other. A year later I went to an optometrist doctor, Dr. Debby, in Michigan who specializes in this (I live in Arizona and was desperate to get my life back). I still didn't know if I had this or not but when I went on their website, Vision Specialists of Birmingham.com, I had most of the symptoms. It was an easy fix. I had to wear glasses with a prism in them. I couldn't believe I suffered with the dizziness for a year and it could be fixed with glasses!

It turns out the best doctors to diagnose this are optometrists, not opthamologists. Also, it's best to go to one that specializes in vision therapy.

Just for history purposes, this dizziness happened before I was dx'd with celiac and was gone before I was gluten free. I was dx'd with celiac about 6 months after I started wearing the glasses.

I just wanted to put out another option if you have exhausted all others.

I hope you are able to feel better soon!
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(Texas girl in AZ)

Diag: 2/2008
Bloodwork - positive, 2/19/08
Biopsy - positive, 2/26/08
Colonoscopy - clean as a whistle!, 2/27/08

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Posted 27 July 2011 - 02:45 PM

Finally someone told me about a condition called vertical heterophoria. This is a condition where one eye sees higher than the other.

It's amazing how many times we find out what's wrong because someone other than a doctor points us in the right direction! Wow.

I'm writing this one down to remember later.
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Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 


Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive



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Posted 10 January 2012 - 10:40 AM

[rant] well, the dizziness continues, and I have been for so many tests and appointments at the TGH ENT/Balance clinic at my last appointment the doctor suggested I may need to see a psychiatrist because they just can't find anything wrong with me. I'm about to give up with all medical doctors entirely and maybe just go find a shaman in the jungles of deepest darkest Peru :P

This dizziness has been going on for a year now, and it started a year AFTER I went gluten free, and I didn't have anythign like this in my laundry list of symptoms when eating gluten. But it could be an additional auto-immune disease, I've got 3 of them diagnosed already. EVERY time I mentioned it to anyone at the ENT clinic or with my GP, they all either brushed it off, or quite literally scoffed at me. If I mention that I've read of several celiac patients with secondary neurological disorders, they say "nope, never heard of it". I can't even get a referral to a neurologist! This is so frustrating! I seriously hate doctors. The closest the ENT would get me to a neurology referral is an appointment with their "balance clinic group" where they have a neurologist, a psychiatrist, and a physical therapist (I think?) in a group therapy sort of thing to help you "live your life with balance issues". What crap.

My life is completely not my own anymore. I'm unemployed, can't drive, and my Mother is one of the worst drivers ever! She makes me nauseous just driving me to the grocery store to do shopping. I hate going anywhere with her, as I'm quite sure she's either going to have us killed, or I will throw up in her lap one day! [/rant]

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