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Subject:
From:
"Dr. Elizabeth Tench, B.Ed., M.A., PhD" <[log in to unmask]>
Reply To:
Dr. Elizabeth Tench, B.Ed., M.A., PhD
Date:
Fri, 30 Jan 2004 00:15:58 -0800
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<<Disclaimer: Verify this information before applying it to your situation.>>

Dear Listmates,

I posted the following message and received so many replies that I could
not respond to all of them and apologize for not being able to do so. I
very much appreciate the support my fellow celiacs gave my sister, and
that so many shared their own stories in great detail. I hope that it is
helpful for interested celiacs to have the detailed responses included
here. My sister found the stories and suggestions immensely helpful and
supportive, and sends a heartfelt thankyou to all who responded.

Sincerely, Lisa

The original question is as follows:

My sister is celiac and has sustained vitamin deficiencies despite going
gf. She has been having periodic attacks of what she describes as like
having someone letting off small camera flashes repeatedly in her field
of vision. She feels lightheaded at the same time. There is usually no
associated headache but sometimes she feels quite nauseated. If she is
in a store with banks of bright neon lights, this can either bring on an
attack or an attack can be amplified if one has already begun. In the
very worst attacks, she can actually fall down unexpectedly, but she is
not aware of having lost consciousness. She gets jerking of arm and leg
muscles when she tries to do any voluntary motions such as reaching for
a light switch during the most severe attacks. The first attack was set
off while seeing Star Wars in an Imax theater, bystanders thought it
serious enough to call an ambulance. Her post-first attack eeg was
normal and she was told she is not epileptic by a neurologist. It is
definitely not light sensitive epilepsy as he checked for that. He has
no idea what might be causing this. Has anyone had or seen anything like
this?

1) this sounds like migraines

2) has she been checked for lyme disease? I had the same symptoms

3) I have been diagnosed with Celiac and M.S. Although, I haven't
experience falling down, I have had light sensitive 'attacks'. My
neurologist attributes this to the M.S. I have had 2 bouts with optic
neuritis in the past, when I lost the vision in my right eye for about a
month each time. Sometimes I lose my balance when I go to a Mall, or
neon-lit areas. So, I do understand the concern.

I know this is scary for your sister. Maybe she can suggest getting a
MRI to check for brain lesions (suggestive of M.S.) Please tell her that
there are medications that can help with the lightheadedness/dizziness.

4) this sounds familiar. I have experienced such, but don't think it's
particularly related to celiac. In my case, the symptoms easily
correspond to those of a "silent migraine," which is just about as
miserable as one with pain. A couple of years ago, I was under a great
deal of stress, and one episode lasted about a week and a half. Yes,
strobe-like lights, etc. (even a great big TV screen) can trigger it.

The flashy lights are like what migraine suffers describe as the "aura."
Whenever I think it's going to happen, sometimes stepping out into the
bright sunlight (we have lots of that in NM), contrary as it may seem,
will take the symptoms away.

I hope this helps you figure out what's going on. I have celiac disease,
type 1 diabetes, and scleroderma, for starters!

* Please remember some posters may be WHEAT-FREE, but not GLUTEN-FREE *

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