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Hi everyone, I received about 20 replies from people about my request about
celiac, seizures, and sleep issues. Many were saying that they had a variety
of seizures both on gluten and off and knew others with the same problem.
Some had sleep problems meaning not getting enough sleep. Most got a lot
better with gluten removal. One person reported the importance of magnesium.

I was particularly interested in the sleep issue as I really struggle with
sleep even off of gluten. I seem to have a week or two of a normal schedule
and then my schedule will flip. I will feel horrible, no energy, irritable.
We will be seeing a neurologist soon to evaluate seizure activity. I take
250 mg. Depakote for headaches.

 There is some information about seizures and CD in The Gluten File.
http://jccglutenfree.googlepages.com/seizuresepilepsy
 In fact, the whole website is a wealth of information that a parent of a
celiac child and affected herself has pulled together. Thank you so much.
Also is a forum called
 www.glutenfreeandbeyond.org/forum which has some discussion about gluten
related seizures.  The following is a quote from the Gluten File:

The relationship between *celiac disease
<http://www.aafp.org/afp/980301ap/pruessn.html>*and epilepsy has been
documented in medical journals for decades. Unfortunately, it is something
our neurologists rarely consider as an underlying possibility in cases of
idiopathic epilepsy.

Recent research is also showing that gluten sensitivity can manifest outside
of intestinal celiac disease, and present solely as neurological disease in
the form of ataxia, peripheral neuropathy, and seizures. This means that
ruling out celiac disease does not absolutely rule out gluten related
neurological disease. This is an important distinction to keep in mind
should you decide to pursue testing. Particularly those with a family
history of autoimmune disease or gastrointestinal problems or vitamin
deficiency should give this consideration.




Another person emailed me:
 I have read some research done by Dr. Hadjivassiliou in Britain implicating
gluten enteropathy in neurologic problems of different types.  For one, he
claims the CNS is sometimes affected.  You might want to do some googling
for this.  It is info that is not hard to find.  Use his name (I may have
spelled it wrong, but google will correct it) plus "gluten neuropathy".

 While some people found the neurology path helpful and medication helpful,
some ditched the medication for more holistic approaches.  One person had a
temporal lobe benign tumor removed and started experiencing vertigo, nausea,
and sweats. He saw a new neurologist who thought the "light headed spells"
were seizures.  A sleep deprived EEG indicated probable complex partial
seizures so we began Lamictal .  The theory was that controlling the
seizures would help the dizziness.   Even before that time, seizures were
down to 5 or 6 that year and very short lived. He believed the gluten free
diet was the reason.  "the medication seemed to help them further until I
had 2 small ones and the doctor freaked out and threatened to take me off
the road if I didn't increase the medication.  That increase caused many
twinges as if a seizure was starting that didn't develop.  Lamictal can
control the big ones but increase the little ones as I found out later
  Summarizing all of this, I believe celiac disease may have caused the
tumor development and the seizures.  Going gluten free reduced them
substantially.  In hindsight I would never have treated the seizures as they
were improving on the gluten free diet.

Diet seem s to help some people. One person has had success with the
seizures and sleep problems with only raw fruit and vegetables. Again you
might want to check the Gluten File again for ideas about diet and food.

In summary, one person reported the following:
I had partial seizures, seemingly helped by eating GF.  Until one day I had
a grand mal, and they discovered a brain tumor upon my visit to the ER.  I
assume, since they know the source of your seizures, that you have had CT
scans and/or MRIs.  If not, PLEASE do get them.

thanks,
Carolyn Rasche

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