<<Disclaimer: Verify this information before applying it to your situation.>> 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. [log in to unmask]