Hi Everyone,

I'm sorry that I have been away from the forum for so long. I am trying desperately to finish my book, a major part of which in the diet for epilepsy (the GARD). The results continue to be astounding in both pets and people. I am probably hearing about more human cases than veterinary at this point.

I will be launching new Website in the near future with updated testimonials, including one from a father of a child suffering from Late Infantile Batten Disease, a tragic neurological condition that is characterized by seizures and early deaths. Yes, the diet helps in many forms of seizures. I have even had pets with brain tumors stop seizing for a time on the diet. Once we understand the mechanisms involved- the malabsorption syndrome, immune suppression, lectin damage, and glutamate overload- and how they are all driven by the "big 4 foods (gluten, dairy, soy and corn) and complicated by food additives (e.g. MSG, aspartame), estrogens/xenoestrogens, and environmental pollutants, then we KNOW what we have to do and why the approach works.

I have treated epilepsy and other seizure disorders with diet alone for almost 10 years now with amazing results, proving that the elimination diet is the single factor in the control of seizures. But as of late, I have added a few vital supplements to the "to-do" list that make sense in our quest for seizure control. These include D3, omegas, magnesium, B complex, selenium, lecithin (from eggs), and antioxidants. The latter include vitamin C, E, and grape seed extract, the last being one of the most powerful antioxidants known (yet man created seedless grapes. Hmmm...). These should all speed up and insure recovery as many of us are woefully deficient in these vital nutrients. But I am thankful that I used the elimination diet alone to treat seizures for the initial ten years to prove that the forbidden foods were doing sooo much harm in epilepsy and other cases of neurodegenerative diseases.

The most recent discovery has been the secondary "glutenization" through the consumption of animals that are fed gluten, soy and corn, chicken and eggs being the most notable. I suspected years ago that this was possible but I only recently found this to be true in my own life. The elimination of chicken greatly improved my daytime moods and energy levels. There are now articles available from people who found the same thing about eggs produced by chickens fed a vegetarian diet (soy, corn, wheat). Sadly, these are very real issues and will affect the "worst of the worst" individuals, perhaps even preventing an epileptic from enjoying a full recovery.

The cattle (cows, lamb, deer, buffalo) are less likely to have high levels of lectins in their flesh due to the fact that they ferment their food in their forestomachs, fermentation being a process that helps to inactivate lectins (e.g. yogurt, kefir, soy fermentation and even sour-dough bread).

The use of glucosamine could actually help remove these trace sources as this essential sugar is known to bind to proteins (such as those from gluten, dairy, soy and corn as well as bacteria) and prevent their attachment to tissue. This is one of the known mechanisms of essential sugars (which is a fascinating topic to study).

The bottom line is epilepsy is bound to be viral in origin and it is the negative effect of diet and pollutants/free radicals/carcinogens on these entities that leads to seizures. There are over 25 viruses known to cause seizures in man alone, many of which are chronic, latent and ubiquitous. Epilepsy, ,like autism, appears to be a "perfect storm" situation in which the neurons and immune system are damaged, resulting in seizures when the glutamate, aspartate, lectins, estrogens/xenoestrogens, and free radicals are applied to those diseased neurons. And it is clear that these viruses can be transmitted
in the very DNA of individuals (which we know occurs), explaining the human family and dog breed predisposition to "idiopathic epilepsy. This is similar to familial cancers (e.g. of the breast) and other neurological disorders (e.g. Huntington's). This is what some viruses do- incorporate their genetic information into our DNA. We should not be surprised to find that much of this is transmitted vertically to our offspring. I just heard from a client who was epileptic and whose father was and his child is epileptic. This happens regularly in breeds of dogs.

I hope this helps to clarify just why the diet works so well but why some individuals have to do much more to see results than others. But I am convinced that even the worst can respond if they are capable of doing enough right. That may involve moving from NYC or some other horribly polluted city (like one of my MS success stories did) or the successful treatment of a co-existing condition (e.g. hypothyroidism- VERY important) but I see now reason why anyone with idiopathic epilepsy cannot improve if they are willing to take the appropriate measures.

I do hope this helps,
John

Okay, my first question is this, if i start the modified atkins diet to control my seizures, will I have to be on it forever?? If so, what happens if i go off of the diet, i mean trying to think realistically, being in college i've got my whole life ahead of me, first and foremost being seizure free would be great. Right now I take keppra to control my seizures and its worked pretty well. I have a grand-mal seizure only once every 2 years or so (i'm extremely fortunate) But mine are very SLEEP related. If I don't get enough sleep, I most definitely have a seizure, most would thing simple- and yes I've got it much easier than a lot of people with epilepsy. However this has lead me into extreme anxiety, restlessness, my doctor put me on sleeping pills, and they help- but I want to be off medication completely. So i guess what i'm trying to get at is, if i start this thing and I see that it's working, will I be able to ease my way back eventually into "healthy eating" not just watching my carbs, AND if i start this, and i'm out for a night with friends, will I be able to.. eat cake at a birthday party or... hot chocolate occasionally in the winter? or have I got to be strict to this thing forever?


Sorry for all the questions please let me know asap!

Hi Honeygirl,

If you go on the atkins diet you will have to stay on the diet for at least 2 yrs. if not longer. The atkins diet is very similar to the ketogenic diet which is really meant to reduce or stop seizures. This is a very strick diet and you will have to watch what you eat while on either of these diets. If you are interested in either of these diets you should see a dietician who can help you out and get you on one of these diets. If you want to try the ketogenic diet you can buy the book titled: "The Epilepsy Diet Treatment" By Dr. John Freeman this book explains how the diet works, some of the side effects from the diet, as well as giving you a few recipes while on the diet. Whatever you do you much cut back on both carbs and starch foods along with nutra sweet and anything like nutra sweet. You will have to eat foods high in fat instead but take my word you will lose weight I lost 80 lbs. in 4 months on this diet and my cholestorl and blood pressure have been the best they have been in yrs. Here's wishing you well and May God Bless You!

Sue

I have Juvenile Myoclonic Epilepsy which I have had for 11 years, since I was 17. The teen years is usually when JME starts (hence the "Juvenile". Throughout the years I have learned my triggers. By far the biggest, main trigger for people with JME is sleep. I have to get lots of sleep and I can't get up early. (You may think that sounds great but I actually miss out on a lot!) Another trigger for me is my menstrual cycle -- when I ovulate and especially when my period is at it's heaviest I have more seizure activity. (Sorry for TMI!) I don't have grand mal seizures very often since I am on medication, but I have "jerks" -- muscle spasms in the arms that if I don't control my triggers I eventually have a grand mal.

Two years ago I radically switched up my diet to avoid the severe constipation I experienced. My jerking immediately got a lot worse. Through much Internet research (Dr. J and others) I discovered the connection of epilepsy and food. What I had done was starting eating whole wheat and whole grains. Previously I had only eaten white flour and very occasional whole grains.[/B][/B] I switched back to eating white flour, in moderate amounts and added more fruits & veggies, to avoid constipation.

I had also completely cut out cheese to avoid constipation, a food that I had eaten a lot of very regularly previously. Unfortunately when I slowly started to add back things in small amounts like cheese, I discovered I couldn't tolerate it -- my head felt very strange, and I would jerk worse the next morning or even shortly after eating. I also experienced panicky feelings after eating foods like whole wheat.

I recommend to anybody planning to switch their diet radically to instead do it gradually. Also expect that you may never be able to go back to your old way of eating. Don't let that scare you though if it helps your seizures.

I am still learning every day what I can and can't eat. Besides my epilepsy, I also have to think of constipation, and my interstitial cystitis, and just health in general such as my weight. I often get discouraged because it doesn't seem there is anything I can eat. I like variety, and there is only so and so many potatoes and eggs I can eat a day...a week...a month!

This is what I have discovered personally myself, through Dr. J, other websites, and trial and error (I haven't even bothered mentioning this to my md or neuro) :

-absolutely NO whole wheat
-absolutely NO Parmesan cheese
-absolutely NO soy

I avoid the above 3 like the plague, and soy seems to be in everything!! I have become an obsessive label-reader!

I also quite strictly limit :
-white flour
-any grains
-any cheese
-seeds, beans, nuts
-sugar

I have always hated artificial sweeteners, so it hasn't been too hard for me to avoid that one, too! Yuck, it makes me feel awful & tastes horrible!

I have never had a problem with corn, rice, dairy in limited quantities, chicken, eggs, most meats (I've never eaten much meat anyway), and veggies. Fruits I try to eat the ones with the lowest amounts of sugar.

That's my own personal experience. Anybody else out there who has JME or have children who do?

With that implied above; I just cannot help but wonder if you
had been tested for lactose intolerance and also for
thyroid?

Yes, you can have Epilepsy and also have problems with
being lactose intolerant and/or having thyroid problems,
until you had been tested and retested on two separate
incidents for confirmation. It is possible that you could also
have another medical condition which can provoke seizures.

My son is Dx'd (diagnosed and confirmed) with Epilepsy and
he has BOTH lactose and hyperthyroidism; while his body
rejects the Synthyroid (medication to treat the thyroid); it is
due to the fact he is a carrier of what I have - mitochondrial
after further testing. As for anything lactose related - he had
to withdraw from it for several months and be reintroduce it
gradually but in very small portions.

He battles with this, like a severe alcoholic going through
cravings for a bottle; he gets this wild cravings for example,
milk - and would down an entire gallon of milk all by himself
and have the urge for more, and if there's another gallon of
milk in there, he would down that too - or anything that has
lactose such as cheese, and so on - he will eat it up like a
wino that had been given the key to drink up everything in
the liquor store! Once started, that wino won't stop until he's
passed out ... not to mention a huge mess he's made too!



However, with my son, there's a tremendous price to pay
for what he had did and done - he gets sick, suffers greatly,
and does seize. *sigh* Hence, why one must not stock up
with lactose items in the household except the bare minimal
so when he gets the cravings, when it's gone, it's gone. At
least it won't get himself into a dire situation; but the possibility
of him getting sick is a coin toss, depends on what all he ate
and drank.

While he is a mirror image of his mother (me), he has a lot which
now scares him, including cardiac and other things - but I do not
have lactose or thyroid problems, that part is unknown as where
that came from but something about the genetic link is missing.
Then again this is mitochondrial ...

He is trying to get his Doctor to have him go to a Neurologist and
to my Cardio-Surgeon as his Cardiologist is recommending it, he
is also pushing for Folic Acid as I am on it.

It is hard to imply or say anything yet - because they are talking
about having a possibility of having BOTH of us on VEEG together
in the same room on the Digital Montage Unit (they are going to
move one to one room) so they can watch the EEG's in comparison
with each other together including monitoring on video as well.
I know I am on an E-Free trip, but they are just talking at this
point. Connecting the two and two together is what they are
looking for; for we are so much alike in a lot of ways and differing
in other ways - through this, they will be able to see if all because
of the pattern he is following just after his mother (based on the
historical records).

This will also give a better viewpoint and a solid ground for his
child and my grandchild - an establishment; which they are keeping
a close eye on the grand child.

Hi everyone. I am in England but would like to share my daughters experience.
For 8 months the doctors have been pumping Hannah with anti-epileptic medicine. It started as one medicine in November last year, then increased to 2 medicines a month later as she was too hyperactive and they wanted to calm her down. She continued to have seizures. She has had MRI, EEG's and various other tests to rule out the more unpleasant conditions. At my last meeting with the neurologist three weeks ago I asked to be put on ketogenic diet as I was sick of all the side effects of the medicine. She is irritable, emotional, her speech is undeveloped and it is noticeably worse since starting on the medicine. The doctors would say this is the epilepsy and not the drugs. She is clumsy and although they wont confirm this I believe that it is a cocktail of the drugs she is receiving. I hate the drugs and I feel so upset having to put three syringes in her mouth every morning and night. Because of the hope of the diet (but it being a 6 month waiting list) I began to do my own research on the internet regarding diet and epilepsy and that is when I started to think that I could make changes myself in a safe manner with a view to reducing her seizures. Here I read about G.A.R.D

Hannahs seizures are mild in the sense that they are not grand mal seizures and involve only her head nodding and muscles twitching slightly in her arms and hands. Before she started on the medicine 8 months ago they were very infrequent. The daily amount of seizures has fluctuated since then and would be anything between 2 and 6. The medicine in my opinion has made absolutely no difference other than make my daughter unhappy and makes myself and her family more concerned. Her seizures last a couple of minutes, maybe a little longer and she is always tired after. She has a cluster of head drops. When I first started to notice them before she went on the medicine it was like she was falling asleep with her head going down, but then she would wake up again. Imagine someone sitting in a chair nodding off. It was like that. Other than 2 episodes in the last 8 months where she was a bit rigid and her lips went a little blue, hannah has not shown any signs of any other type of seizure. However, this hasnt stopped the hospital from feeling that it is an evolving form of epilepsy.


I have spent hours scanning the internet every night but always making sure that it is information and suggestions that are repeated more than once on different epilepsy web pages and not just some random person saying what they would do. I read a great detail about Glutamate and its affect on the brain. The doctors hate the internet. I hate talking to them about what I have read. I feel like they will laugh at me. From what I understand, I think Glutamine is an amino acid involved in transmitting information in the brain. Glutamate in food can cause harm to the brain when messages are overwhelming. Glutamic acid from food sources can get into the brain injuring and killing neurons. I am not saying I know all of this. I am just saying this is familiar and repeated information I have come across.

By adapting her diet and eliminating the harmful ingredients that are contributing to her seizures, I want to increase Hannahs health and raise the threshold for epileptic fits to occur. Does this make sense? I am trying to find the cause of the seizures as epilepsy is a symptom of a condition or illness, where as the hospital are trying to control the symptoms. This to me isn’t a solution. Its just delaying something.

Apparently, our genetic make up makes some people more prone to illness and disease than others. We all have viruses in our body that usually remain dormant until something aggravates them so much to the point that the body cant cope and the person become ill as their immune system cannot fight it any longer. My mum died of breast cancer aged 34. Completely random as no one else in our family had it. Prior to getting epilepsy, Hannah had more than her fair share of chest infections. The doctors actually gave her an inhaler to use which did absolutley nothing. To me it seemed like she had quite a weak immune system. I have read that one of the causes of seizures is chronic infection. Maybe Hannahs genetic make up didnt give her the protection that she needed (like my mum) and this infection buried itself in her brain and started to cause seizures. I dont know I am just looking for answers.

I saw that dairy and wheat have high levels of glutamate. I stopped these at first. Within one day hannah stopped having her seizures that occurred in the day. Prior to this it was common for her to have one or two when lying in bed after waking in the morning and she would always have one or two later in the day. However, she continued to have them in the morning. Hannah had loved her milk. She would have about 8oz in the morning to drink. 6oz with her breakfast and another 8oz at night. This is full fat too. I was lead to believe by what you read and see on the television that milk was so important. I know different now. She also used to have weetabix and banana for breakfast. She now has oats and fruit of wheat

I have since excluded soy and corn and gluten

Hannah has adapted well to the changes I have made. Lots more poos. She seems happier but that could be because I insisted that the neurologist decreased the third medicine as I really didnt like the side effects. I am in touch with a qualified Nutritionist who is a tutor in nutritional healing. I am providing Hannah with foods that contain calcium which she will be missing from her dairy.My neurologist has advised me to speak to a dietician also through my doctor which I will also do. He wasnt appreciative of the reduction in seizures through her change in diet.

I have read that Medicines that control seizures may interfere with the bodys ability to use certain nutrients. Most vulnerable are those on multiple drugs and high doses. This is Hannahs situation. How do I know if her body is absorbing everything it should be and that my hard work isn’t going to waste?

Hannahs seizure seems to occur in the morning now either on waking when she is still lying down or within an hour of waking up. I am now trying to get a lot more water into her as that is SO important. Her body needs to become more alkaline. Simple things like soaking her oats in water overnight and giving her warm water with a splash of orange juice at night instead of rice milk. I am learning so much along the way.

I really believe her diet will be the key to controlling her seizures. Who knows what the long term effects of medicine might be.


So many tests they could do but I guess it boils down to the fact that the dont want to spend money. Like hair strand test would tell them about any inflammation in the brain. Seizures could be as a result of nutrient def, enzyme def, intolerance tests and so on. Because they don’t want to do all these tests they just say its idiopathic meaning they don’t know the cause. I feel that if they tried hard enough they would find it. Instead they offer the simplest and easiest method for parents which are the drugs. As no one knows the long term side effects of the drugs people are usually happy to just deal with the symptoms. I want more. All these possible tests are diet related and not one mention of the importance of diet and controlling seizures has passed the doctors lips. I know they are trained in a certain way and that probably using prescribed medicine is the way to go but they are human after all. Surely if someone like me can look deeper into a problem, then why don’t they have the same instincts? I guess if they offered a natural approach then they wouldnt be a doctor would they? Doctors treat symptoms.

I really believe that it is possible to reverse some conditions by cleansing the body of all the horrible things that have been thrown at it and by introducing nice things in the way of good food to help it heal. I understand it can take time especially as Hannah has been having daily seizures for 8 months. It angers me so much that the medical profession pray on the vulnerability of parents who have to trust their doctor because they know nothing else. I believe that if hannahs medicine had worked after the first drug was introduced and her seizures stopped then I would have settled for that. I believe I have been given the chance to do what should have been suggested to me in the first instance by the doctors rather than shoving this unnatural rubbish down my poor daughters throat. Doctors dont have to recommend seeing a dietician or nutritionist but for a parent like me who was gobsmacked to discover she had epilepsy, being given all options would have been nice so that i could decide which I thought was best for her.

Thank you for reading this. I just wanted to give some insight into my experience with epilepsy and diet. Obviously, it is up to every person or parent what they think is right and I am by no means suggesting changes you can make. Hannah still has her medicine but I will be speaking to the neurologist about weaning her off when he gets back from holiday. I know that medicine must never just be stopped. Good luck everyone. Sometimes simple changes can make a difference, thats all I am saying and it doesnt have to be forever. Just until they are better.
Debbie
xxx

Hi Debbie,

Welcome to the forum! I've been taking AED's (seizure meds) for over 30 yrs. now and I found that I was drug resistant. You are correct the diet is the best way to go and the diet won't hurt your daughter as much as the AED's do. I've been doing the ketogenic diet on my own since my health insurance company is refusing to cover me to see a Dietician.

I don't know how old your daughter is but I started having seizures when I was 10 yrs. old and the main thing that triggered seizures for me was hormonal changes each month. I later found out that eating almond or peanuts was a big help because they have progesterone in them and this helps calm the nerves and reduces seizures.

Some of the ways a person can end up getting epilepsy are:

sleep apnea, lack of oxygen at birth or later in life, difficulties at birth, family genes, drug or alcohol abuse, trauma, a bad blow to the head, or to many cells on one area of the brain that never dissolved and in turn lead to scar tissue on the brain.

If you can get it get the book titled "The Epilepsy Diet Treatment" By Dr. John Freeman this is an excellent bood that explains all about the ketogenic diet, how it works, the side effects, along with a few recipes. I wish you and Hannah only the best of luck and May God Bless the Both Of You!

Sue

Hi debbie,

just wanted to know how you have ended up? I think my son had the same type of seizures and we are now sure it was gluten and caseing causing it. My complete story is written here:

moderator edit ***

And it was a damn struggle with "medicine". He is now in perfect shape without any medicine.

DusanV,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

My 10 yr old son started having simple partial seizures in dec. last year. He had a few "biggies" and then settled in to having about one every week. Doc started him on Trileptal which caused a rash and more seizures. ER visit...Keppra. Lots of Keppra. He had a horrible reaction...psychosis and hallucinations...and some time in the ICU. We tried Topamax, Vimpat, Klonapin. Of course we were told to give diastat for his seizures, which seemed to go on for 30-40 minutes ata time. Seizures continued to occur... between twice daily and every other day. He missed over a month of school. sadly, he wasn't the same boy I knew for a decade. He was scared, unfocused, unmotivated, and dull (brain altering meds).

I suspected something more than the doctors offered as an explanation (heads of neurology at children's hospital - we saw several).

A visit to a DO, left us encouraged for the first time in months!

We went gluten free. We tested it by eliminating it for 2 weeks, and reintroducing it with one cookie. Within minutes he was crying. His face was red, palms sweaty, and getting electric shocks and zaps. The next day he was an emotional wreck and unable to concentrate at school. Since then, there have been a few accidental gluten ingestions...all end the same...with an over emotional boy, sweaty palms, electric zaps, stomache pain, and brain fog.

Non-celiac gluten sensitivity or gluten intolerance causes neurological symptoms. Google it.

My boy is back...bright again! He's happy and thriving.

He has an episode about twice a month, but he is back to himself and off all drugs. Our neuro doesn't even care to see him anymore!

So so grateful.