<<Disclaimer: Verify this information before applying it to your situation.>>
18) Where are you located? If in the vicinity of NYC there is an
extraordinarily astute optometrist who has picked up on various kinds of
vitamin deficiencies, sugar imbalances, etc. by thorough examination of
the eye. He has reversed the process of macular degeneration for one of
my friends simplythrough citamin therapy, and has been remarkably astute
in facilitating diagnosis and treatment of nutritional imbalances in my
system since going gf 7 years ago. I had light sensitivity plus related
headaches, and almost fainting / loss of balance spells before going gf.
19) I would suggest you to ask your questions at this other excellent
forum:
http://forums.delphiforums.com/celiac/messages/?ctx=16
There are kind and knowledgeable people to answer you, among them
doctors.
20) Almost sounds like a migraine. There are different kinds...I think
I've heard something about non-typical ones where people just kind of
bland out rather than get headaches but the nausea can be a symptoms.
Lights can trigger them. Some of the research links them to wheat
intolerance.
21) Could your sister be suffering from migraines? Not all migraines
produce headaches, particularly those which affect the eyes.
22) Before going g/f over 20 years ago, I had the same symptoms, along
with vertigo and dimming of vision, particularly if I was tired. In
addition, I have always been unable to tolerate milk, etc.
My brother experienced the same symptoms. He was put on a gluten-free
diet for suspected MS; but, it wasn't until he also eliminated dairy
from his diet that his symptoms disappeared.
23) I'm responding to your note about your celiac sister and her
attacks. They sound a lot like migraine attacks to me. I get migraines,
and the nausea is often the worse symptom (and also often the first)
although I do get the pain part. But the other thing that sounds
familiar is the bright lights in her field off vision (you've probably
heard of migraine "aura" - it comes in many shapes and sizes and your
description fits, as I understand it) and the sensitivity to light,
which is often a migraine trigger. I have a friend who is epileptic and
we often trade stories and remark on how similar the migraine and
seizure experiences can be. In particular, I'll get neurological
symptoms that include difficult accessing information, particularly
words, that usually is easily at hand. I have trouble talking or forming
words and even stutter at times during an attack. Finally, I was
surprised to learn recently that there is apparently a connection
between migraine and CD, and it has been established by at least one
serious study (you'll find it if you Google those terms) though I cannot
find a whole lot on it. ... Then again, I could be all wet about what
you describe being migraine. It sounded somewhat like my experience, so
I thought I'd let you know. Best of luck to her.
24) This is nothing more than a wild guess, but if you don't come up
with anything else, you might explore some sort of association with
migraines. I seem to remember hearing of people with migraine-type
symptoms but no headache or only a small one.
25) would get a second opinion from a different neurologist, sure sounds
like epilepsy to me.
I have celiac disease, my brother and mother were epileptic. I haven't
gotten anything positive for the weird light flashing/ pre-migraine
things that happen to me, sometimes they come with migraine, sometimes
no headache.I get a burning in my hand and feet, and have a small tremor
and grip failure as well. (The last two things are probably because of
my Graves' disease) I think my other problems have to do with bad
posture: physical therapy taught me when I am bending forward for long
periods of time, I have to do some gentle back bends, and lie on my
stomach, head on pillow for 20 minutes or so, to make them go away.
Bulging discs because of poor spinal alignment cause the nerve paths to
hang up in the spinal column, (to say it in the most clumsy possible,
way!) I don't think this is celiac related, I don't have osteoporosis.
My neurologist, who ordered thousands of dollars worth of tests (MRI,
blood tests, electro-conductivity study) had no clue what was causing
it. It was a lowly physical therapist who figured it out. Apparently,
signals from the brain can get messed up anywhere along the nerve path,
especially the spinal column. Better posture cured me within the day I
found out what was going on! Not saying it is the same for your sister,
just telling you my POV
26) I have heard thet Gluten Ataxia can present with neurological
problems. She should see a neurologist if she hasn't already. It sounds
like she could be having slight seizures . Good luck and I hope she
mends fast !
27) Lisa, are the doctors sure she's not having migraines? With ocular
migraines especially, you can experience visual disturbances, muscle
weakness and nausea, without the accompanying headache. On a more
serious note, I hope her doctors have looked at the possibility of MS.
28) I'm not sure what they mean, but whenever I go to my retinologist I
am routinely asked if I have had any "flashes". This sounds like it
might be what they are talking about. I asked what they are like one
time and the technician said, "Oh, believe me, if you get one you will
know what I'm talking about." I have celiac disease, as well as asthma,
Sjogren's syndrome and arthritis. They call it CAST. The plaquenil I
take for the Sjogren's can damage the retina, so that's why I have to
see the retinologist regularly. It sounds to me like she should get
herself to a good eye doctor.
29) This is not caused by celiac........it is caused scatoma (scotomas)
and it is the aura that is migraine-like but with or without the
associated headache. My mother has experienced this for years. It's very
benign.
30) The symptoms you describe are extremely similar to the symptoms I
had before going GF. Almost exactly the same....is your sister perhaps
eating something that she thinks is GF, but isn't? Does she eat oats?
Vinegars? Any other food that is somewhat debatable, such as kamut or
millet? If not, does she drink diet sodas? They give me seizure-like
reactions...I have had to cut out aspartame completely. I can tolerate
saccharine (Sweet N Low) but no other artificial sweeteners. I hope she
finds out the source of her problem...I can't help but think it has to
be something she's been eating...but I'm not a doctor, just extremely
sensitive to glutens.
31) The visual disturbances and nausea sound like migraines, despite the
lack of headache. I've gotten them once in a while, and my s.o. (not
someone with celiac) gets them fairly frequently.
BTW, my father has epilepsy. The first few seizures were described as
"idiopathic grand mal seizures", which ultimately translated as "you
haven't had enough for us to label it epilepsy yet". After a few more,
they did more tests and decided to call it epilepsy. If she keeps having
problems, and they're not determined to be migraine, I'd suggest she
check back with that neurologist.
32) It may be as simple as an eye migraine. I have had these and nausea
accompanies the disturbing inner visions of a ribbon of light (may also
be colored lights). It passes, but requires a darkened room and quiet -
just like any migraine headache sufferer. The cause is unknown, but
anything can trigger it. Many things go out of balance at these times,
and the ribbon of light seems to impose itself on/over the regular field
of vision. As far as I know, there is no known treatment - except rest
and quiet, and then it will pass and all is well again.
* Please remember some posters may be WHEAT-FREE, but not GLUTEN-FREE *
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