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Subject:
From:
Roy Jamron <[log in to unmask]>
Reply To:
Roy Jamron <[log in to unmask]>
Date:
Sat, 26 Jul 2003 23:37:42 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>

Below is a summary of the responses to "Epilepsy, The Ketogenic Diet, and
CD".  But first, let me make a few points.

There are numerous articles are the ketogenic diet, the abstracts of which
can be reviewed by entering "ketogenic diet" in the search window of PubMed:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi

These articles make it clear that the mechanism which makes the ketogenic
diet work is UNKNOWN.  The 75 year old THEORY behind the diet is based on
the effects of ketones produced by the body during conditions of fasting or
starvation.  The ketogenic diet attempts to induce that starvation state of
ketone production.  Some recent studies in mice suggest that acetone and
other such chemicals may have an anticonvulsant effect.  Studies also
confirm that a significant percentage of epileptic patients have a
reduction or elimination of seizures when placed on the ketogenic diet.

As I have previously indicated, the ketogenic diet forbids sugar and starch
and is, therefore, also a gluten-free diet.  The elimination of gluten in
some epileptic patients with celiac disease has also resulted in a
significant reduction or elimination of seizures.  To date, there have been
absolutely NO studies which consider that the ketogenic diet IS a gluten-
free diet.  It is, therefore, impossible to determine whether the effects
of the ketogenic diet are due to ketones, gluten, or some other cause.
Controlled studies are needed to see if a gluten-free diet alone will work
in place of the ketogenic diet.  Certainly, it is wise to screen any
epileptic candidate for celiac disease before being placed on the ketogenic
diet.

In addition, gluten itself, outside of celiac disease, has been
demonstrated to cause the production of free radicals, IgE, and IgG.  So
even if a test for CD is negative, gluten still may be a factor in
epileptic seizures.

Item #47065 (26 Jun 2003 21:26) - A Role For Antioxidant Therapy in CD?
http://maelstrom.stjohns.edu/CGI/wa.exe?A2=ind0306D&L=celiac&P=R3889

By the way, I found this recent dissertation on the internet which has some
discussion on epilepsy and CD:

Neurological Manifestations in Celiac Disease
http://acta.uta.fi/pdf/951-44-5681-5.pdf

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The responses:

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Interesting that you should mention this, Roy. I had the exact same
thoughts.

Jaki S.
__________
Having a child with CD and epilepsy I looked into this diet, as we had a
recognised ketogenic diet therapist in Australia recently, I am also a
member of the Epilepsy Assn.  It behoves me to state that this diet is only
used with children whose seizures cannot be controlled by medication, it has
to be done within a hospital environment so that the child's nutritional
intake can be monitored, and is only used until their seizures are able to
be controlled.

Having said all of that, my daughter's neuroligist, who is the leading
expert in Australia on Parkinson's Disease, has stated that diet plays a far
greater role than is appreciated.

My daughter is on a great dose of Carbamazepine per day to control her
epileptic seizures, caused by CD, but,because the medication works, and her
gluten free diet does,  the Ketogenic diet would not.  But, once again, she
does not have uncontrolled seizures.

Sylvia

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Hi Roy,
I always enjoy reading your very informative posts. Thank you.
We raised the same possibility in Dangerous Grains.

Best Wishes,
Ron Hoggan
co-author of Dangerous Grains

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Roy-- I had wanted to contact  him [Jim Abrahams] and see if his son/
family had been
tested for gluten issues, since we know the incidence of epilepsy in CD and
wonder if he does.   Helen   RN

----------
I've seen the ketogenic diet used a few times. It is not lightly undertaken,
and used only with patients who have seizures that are totally unresponsive
to any other medical treatment (in other words, are seizing all the time).
You approached it as a money making deal ("the real reason is to protect the
profit interests of clinics") which is no where near the truth. There is
ALOT of monitoring of blood and urine chemistries and it would be a very
dangerous thing to undertake, just 'because there is no wheat'. The
ketogenic diet is a LAST RESORT for these kids (I work in pediatrics);
cheating was not a problem, because they were so impaired by their seizures
that 'sneaking a cookie' was not even on the horizon. Susan B., RN

----------
The ketogenic diet works by putting the child into ketoacidosis, which has
nothing to do with gluten intake.  The connection between celiac and
epilepsy is usually caused by calcifications in the brain, and the seizures
usually come from the base of the brain.  The reason that I know this is
that I am celiac, my 6 year old has the gene, but not the disease, and she
also has epilepsy.  Her epilepsy is frontal lobe, therefore, not caused by
celiac (plus she has no calcifications).  I did a consult with Johns
Hopkins, and they suggested the ketogenic diet, but we did not go this
route because she has many food allergies, the highest being milk.  (the
main staple of the ketogenic diet is heavy cream)  Hope this helps!
Lisa

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