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Hi, Lynn.
Sorry if this post is a bit longwinded, but I found it rather
difficult to make it any shorter with out missing the point.
This is not advice, it is just about how I coped with my
Epilepsy and the changes in it, after I went on a C/ G/F Diet.
I am suprised to note that no one else, has answered your post on the
listserv. perhaps they posted you privately, if so, I would be very
interested in any information you received from them.
First question,
(Does anyone know of any recent, high quality, scientific information)
Don Wiss sent me some Research Papers last April, perhaps they are the
type you are looking for. I am sure Don would post them to you if you
requested then.
(2) (I would like him to consider a gluten free diet as a medically
valid and reasonable alternative to anti-seizure medications.)
I have included, at the end of this post, some papers I came across
yesterday. They seem to agree with what I have said in this Post.
Wish I had seen them 10 months ago.
(3) (Any personal experiences of seizure reduction on gluten free
diet would be appreciated, too.)
I had to include all the problems, as I believe the epilepsy was only
part of the whole story. I will try to keep this as brief as
possible, But as I was never diagnosed a Celiac, I feel I need to give
you an insight in to the medical problems my son Niall age 15 and I
suffered, before I talk about my epilepsy.
Niall and I were diagnosed with IgA Nephropathy (inflammation of the
kidneys, due to raised IgA antibodies) I was unimpressed with this
diagnosis, it was just another one to add to the list I already had.
If you think this reads like some thing out of a nightmare, you are
right, it was one I was awake in.
Born 1954. Chronic throat infections (with dark red urine sometimes)
since birth. IBS 1970, Gallstones removed 1973 (age 18) could this
have been a taurine problem) Inflammation of sacroiliac joint 1983.
Panic Attacks 1984. Chronic fatigue syndrome 1988. Partial Epilepsy
1989. (I had been having seizures since 1980 diagnosed 1989. Guttate
Psoriasis 1992. (painful dot like lesions only on my feet) Gout, one
attack in April of 1995. A purple rash on the inner tights, identical
on both legs. Flank pain. Diarrhea for the first 10 years, from then
on severe constipation. Nausea, fatigue, glue ear, rhinitis, burning
headaches and ringing in ears. ALL FROM A DIAGNOSIS OF IBS IN 1970
Before you think I am some kind of NUT, I must tell you that after
eight months and two weeks on A Gluten and Casien Free Diet along with
a mixture of EFA. (fish, flax, starflower ) Amino Acids, Vitamin C
and B complex.
I NOW HAVE --
The P.S. Epilepsy well under control, one attack since - 25th May 96
This was when I tried to reintroduce Soya bran in to my Diet. When
Niall and I went on this diet, at first we found we could not tolerate
Corn or Soya either. The corn has been reintroduced but not the Soya.
Sometimes I can still feel a seizure starting, if I get hungry or over
tired. But a meal or a rest is all I need to feel well again.
I now have a reduction in the urine problems, Nausea from time to
time. There has been no improvement in the inflammation of sacroiliac
joint yet. Although I say the The Guttate Psoriasis had gone, there
is always a DOT, the size of a grain of Wheat, behind one of my toes,
as one heals another appears. but this does not cause me any trouble,
even the pitting of my finger nails has disappeared. Every thing else
is gone. I am using the bathroom every morning for the first time in
my life.
I have to say this and it is only me I am talking about, this is not
advice. I DO BELIEVE THAT THE ADDICTION OF FLAX, STARFLOWER AND FISH
Oil to the G/C Free Diet. Played a major part is the fact that the
Psoriasis and Epilepsy are now ALMOST gone. I did not take them for
the first 3 months of the Diet, due to the cost. I was already buying
them for my son, Niall . But then I decided to take them and that is
when the Epilepsy started to go. I hope to write an e-mail to the
epilepsy-listserve soon about this, Also I Take Epsom salt baths 3
times a week.
You don't say what type of seizures you have? I have Simple Partial
Seizures, they started in 1980, diagnosed 89. But, I never took any
type of anti-seizure meds. for them,( my Doctor was against my doing
so, as he said he had found them useless in that type of epilepsy.)
So perhaps mine where mild in comparison to yours. Although at times
I thought I was going Mad as, they started to roll in to one another
lasting days at a time. They always started the same way.
(A) A sudden feeling of fear or dread. (this even happened
in my sleep, I would force my-self awake, feeling that some-one
was dying and they needed help.
(B) A tingle or crawling sensation across my fore-head, as the years
went on this worked down my face to as far as my top lip. So it
tingled from forehead to top lip by the time I started the
Gluten/Casien Free diet.
(D) Next a weak feeling, I knew that I needed to lie or sit down.
Then a strange, strong sensation would pass up through my body, I
would then break out in perspiration.
(E) Then my mouth would fill with slaver which had a very
strong taste of blood, At first, I use to run to the bathroom,
thinking that my mouth was full of blood.
(F) Then I would be very tired and usually went to sleep.
As the years went on they happened several times a week. Always worse
at menstruation. Life began to feel like one long seizure and I
started to see, hear, sense and smell things that were not there, When
I closed my eyes people were running to me with their arms out, with a
look of terror on their faces. I lost all Sex Drive and found it hard
to concentrate, it was also a strain to read and bright light was very
disturbing, At the start of a seizure I began to smell some-thing
horrible. Also I would imagine that my leg or arm was growing to
giant size. This was when I knew I had to do some-thing to stop
my-self living in this hell hole.
But then as life would have it FAITH stepped in. My Son Niall who had
been sick for a few years, became worse. with severe Physical
symptoms including, headaches, dizziness, sleepiness, insomnia,
changes in the heart rate (up and down), indigestion, heartburn,
severe diarrhea, gas, tension, weakness, elevation of blood pressure,
hives turned out to be D.H., irritability, constant fatigue and a
weight loss of over 24 pounds. A Diagnoses of D.H., IgANephropathy
(inflammation of the Kidneys) and Possible C.D. was at last made. A
G/C free diet was started.
>From learning all I could about Niall illnesses I came across.
My-Self.
All the problems that I was suffering from seemed to be
connected to the same thing GLUTEN and CASIEN.
By the way, Niall is now back in school, keeping very well, happy,
Every thing has cleared up, As he keeps to a strict G/C F.D. EFA and
Amino Acids, Vitamin C and . Epsom salt baths 3 times a week.
(4) (My psychiatrist is pressuring me to take the
drugs and I would like to give a strict gluten free diet an adequate
trial first.)
If your Seizures are also S.P. Seizures and you have not started to
take any Meds. Yet. I think you would be Quiet justified in trying
the Diet first. But if you are suffering from a more dangerous type,
then you should follow your Doctors advice. Physicians should
remember they are obligated to treat you as an individual, Even to try
nutritional therapies with you if you so wish. Perhaps they fear
malpractice suits. One might wish they had more courage. My Doctor
did, He encouraged me to try the Diet.
Something I found the other day on the Net.
______________________________________________
Dietary Deficiency Increases Susceptibility to
Epileptic Seizures
In the following study supported by the Epilepsy Foundation of
America, scientists report finding a link between seizures and the
lack of amino acids in the diet. Dr.Allan Krumholz, who chairs the EFA
Professional Advisory Board says, "The findings have important
implications, and could be a clue for preventing the development of
epilepsy in some individuals. It opens up a new direction for future
research on the prevention of epilepsy, and weEre pleased that our
support of this project has yielded such interesting results."
The study was done in the laboratory and cannot be applied to the
treatment of epilepsy. Individuals with questions about seizures and
the food they eat should discuss them with their doctor.
UC Davis
NEWS
Davis, Calif., July 10, 1995 -- Diets deficient in amino acids --
chemicals that make up proteins -- can significantly increase
susceptibility to epileptic seizures in rats, according to a study by
researchers at the University of California, Davis.
The findings may lead to a better understanding of some of the
mechanisms involved with epilepsy in humans.
The results of the study led by Dorothy Gietzen, a professor and
neurophysiologist in the UC Davis School of Veterinary Medicine, show
for the first time that dietary deficiency in certain amino acids can
increase seizure severity, shorten the time before a seizure occurs
and lessen the level of chemical stimulant needed to cause a seizure.
The findings are reported in the July issue of the American Journal of
Physiology: Regulatory, Integrative and Comparative Physiology.
These are exciting results suggesting that there are very specific
regions and circuits of the brain that may be influenced by specific
components of the diet, said Karen Gale, a professor of pharmacology
and director of the Interdisciplinary Program in Neuroscience at
Georgetown University in Washing, D.C. As we increase our
understanding of the impact of any environmental change, including
diet, we have a better clue to what we should be paying attention to
in treating people who are susceptible to seizures.
The greatest implications of the study are for chronically
malnourished children in underdeveloped countries or perhaps in
severely developmentally delayed children who suffer from
malnutrition, said Dr. Moshe, a professor of neurology, neuroscience
and pediatrics in the Albert Einstein Medical College of Yeshiva
University in New York. The findings, however, do not suggest that
supplemental amino acids should be considered as an adjunct treatment
for epilepsy in most cases, he stressed.
The researchers selected three indispensable dietary amino acids --
isoleucine, threonine and histidine -- for the study. In a series of
four experiments, they monitored the response to 76 rats on diets
deficient in each of these amino acids. Each experimental diet was
completely lacking in one of the three amino acids. Rats in the
control groups were fed nutritionally balanced diets.
When rats in the experimental group lost 20 percent of their normal
weight, showing that they were clearly nutritionally deficient, they
were given injections of one of two chemicals known to induce
seizures. Control rats also received these chemical stimulants. Rats
in both the test and control groups then were observed to see how long
it would be before they experienced a seizure, how much chemical
stimulant would be needed to induce a seizure and how intense the
seizure would be.
To make sure that any difference in seizure susceptibility was due to
the amino acid deficiency and not to a simple lack of calories or
lowered blood sugar, the researchers included in the study a paired
feeding component. As a result, animals in both test groups received
the same amount of calories, but differing levels of amino acids.
When the data were all compiled they showed a striking increase in the
seizure susceptibility among the rats consuming deficient diets
compared to those animals receiving nutritionally complete diets.
The results of this study support the theory that the anterior
piriform cortex of the brain serves as an alarm system for amino acid
deficiency, said Gietzen. The study also underscores the importance of
making sure that people everywhere are fed an adequate level of
high-quality protein.
Co-authors of this study were Kimberly Dixon, Ban Truong, Andrew
Jones, Jennifer Barrett and David Washburn of the Department of
Veterinary Anatomy, Physiology and Cell Biology, and the Food Intake
Laboratory at UC Davis.
The study was funded by the Epilepsy Foundation of America and the UC
Davis Clinical Nutrition Research Unit, which supports the Food Intake
Laboratory. Amino acids for the research were supplied by Ajinomoto
Co. USA.
The Epilepsy Foundation of America
4351 Garden City Drive
Landover, MD 20785-4941
Local Phone: (301) 459-3700
Toll Free: (800) EFA-1000
Fax: (301) 577-2684
EFA
ALSO
Look at Trace's X-Files on Taurine --
http:205.231.180.25/epilepsy/trace.htm.
Taurine -- http//users.aol.com/anvid1000/private/taurine.htm
Well that is all I can think of at the moment.
Hope you found something helpful in this E-Mail
Please feel free to E-Mail me if I can be of any more help.
Stay Happy by staying Healthy.
Helen.
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