Here is a thread that I posted on the Epilepsy forum of BrainTalk. I would love to hear about what you guys think about it or have done in this regard.

Thanks in advance,
John

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Hi Everyone,

I was just wondering how many of you have actually tried gluten-free, dairy-free, soy-free, corn-free diets for epilepsy? With the ever-increasing awareness of the dietary effects on seizures and the popularity of the ketogenic and now "modified Atkins" diets in people (which I view as helpful but certainly not ideal), I would like to think that more and more are seeing the link between diet and epilepsy.

Most of you know that this has been my passion for the past 7 years, driven by the astounding success I have seen in dogs with epilepsy, at least in those whose owners were totally compliant. I have also now heard of a number of cases in which there were very significant improvements...and even full recoveries...in people who have applied these principles. This should all make sense, especially when we grasp the concept of lectins, which we now know are neurotoxic. Yes, the lectins of gluten can kill neurons.

That fact, combined with the malabsorption syndrome created by the "big 4" (gluten, dairy proteins, soy and corn) and the high glutamate and estrogen contents of these foods, should make it easy to see how food issues can be directly tied to epilepsy. Put "celiac epilepsy" in your search and you will see lots of great info tying these two together.

So, how many have actually tried the elimination diet (or The G.A.R.D. as I call it) for epilepsy? Do any of you have any good success stories to add? I started a thread on this Labrador retriever forum on which to post testimonials, both veterinary and human- http://lab-retriever.net/board/forumdisplay.php?f=13 (See Sticky at the top of the page)

I hope this helps,
John

No one has tried gluten-free, casein-free diets for epilepsy?

May I ask what is keeping you from it? Do you not believe it will help or do you think it will be hard to impossible to employ? Do you believe that stopping all gluten grains (wheat, barley, rye), dairy, soy and corn will be dangerous to your health? Do you need some testimonials? Do you need to have the pathomechanism behind how these food cause seizures explained in simple (or complex) terms? Have you already tried without success?

I would love the chance to address all of these questions and more if you are interested. There is overwhelming evidence that this can help tremendous numbers of epllepsy sufferers. The medical profession is quite excited about the results seen with ketogenic and now "modified Atkins" diets. Wait 'til they see what happens when they focus on "the big 4".

John

Yup, just about 5 years ago I started having unexplained seizures. I took a whole lot of poisonous meds that didn't work, and eventually got tested for a gluten allergy (through enterolab.com---after it came back positive I got the blood test from my doctor and that came back negative) I got on the web and read some info written by you, and decided the soy, corn, and dairy had to go. 2 weeks after going gluten free I had the craziest, most intense, strange dreamlike seizure I have ever had. That was 1 yr and 8 months ago, and not one seizure since. (I was having about 1 every 2 months, and they were getting more and more frequent) I am still on meds, Dilantin and gabapentin, but I was on the same mix in the same amount, and having seizures. Now I have reduced the gaba by one pill every day, its been over a month and no bad effects. Today I'm starting to take one less pill a day, and I am not worried at all, I fully believe the seizures were happening from the diet. (to any concerned citizens out there, yes I have talked with my doctor extensively about this-he bet me a nickel that I was going to have another seizure, and damn do I want my money!) So Dogtor, you asked the million dollar question, why haven't other people tried it? I was surprised at the response I got when talking to other epileptics---I don't think anyone took me seriously. I don't understand because of how low my life had gotten while having these seizures, I would have tried everything--and I would think it would be the same for anyone else suffering from the same. Along comes an option, something that might help. All I have to do is change my diet for a little while, and see if it helps---if not, I go back to the ho-hoes. BUT PEOPLE WON"T DO IT! I really think it has to do with 2 things---laziness and addiction. Addiction to bad food that they think they can't go with out, and laziness because the solution is not just a couple of pills you pop every day. I urge anyone who is having seizures or any other health ailment, try the diet. Nope, it might not work, and if it doesn't you go back to whatever diet you want, it's not like anyone is saying cut your arm off, it might work. The worst that will happen is that you don't get junk food for a month. The best thing that could happen is that you get your life back. As I am lowering my meds right now I will keep checking in and letting people know how things go. I am very optimistic. Thank you Dogtor J---you are doing a wonderful service to a lot of people by doing what you do. I invite anyone to E-mail me with questions or comments, and Dogtor---if you need anyone to write out a testimonial, I'm all yours.

Hi Binger,

Thanks for the great post. Ain't it amazin'??? Like Jimmy Buffett said in one of his old songs about a moonshine drinking bear who started to dance..." a sniff, a sort, a turn and a grunt. So simple, like the jitterbug, it plum evaded me." LOL

This dietary approach is simple, just not easy. But, it IS easy to understand how and why it should...and does...work. As youknow, my site goes to gross detail. People, including many doctors, just do not understand the immense problems that these harmful glycoproteins (lectins) can generate. The cool thing to see is that these same foods provide more than ample warning that they can cause serious health problems through signs such as heartburn, IBS, pain, insomnia, headaches and much more. We can't say that we have not been warned.

I hope that you continue to do well. You should no trouble getting that nickel
from your doctor.

Keep in touch,
John

Hi John,
After our email ping-pong in February, I began my daugher(15) on a GFCFSFCF diet. Thank goodness for Whole Foods, it was easier than I imagined. In addition to a natural hormone, She has now been seizure free for three months. Nothing....

The more research I did the more my common sense kicked in. I had never given thought to the intestinal health of my child. She was constipated, not drinking much water, and eating what I considered to be a healthy diet... full of white flours, and dairy. I have slowly taken her off of her ASD because I am healing her internally and see great results.

I am forever indebted to you, and your willingness to share your knowledge. I have yet to find a doctor that is interested in this subject. I quote your studies quite often, and suggest others look at your site.
I can not comprehend why others would not consider this route before more radical methods. Guess popping a pill is easy. Seeing the suicidal side effects reported on Neurontin made up my mind to pull her off of it.

Thank you from the bottom of my heart. I hope to report back with continued positive results.

Robin

Hi Robin,

It's GREAT to hear from you again. Your response brought tears to my eyes. Many times I simply rejoice when I hear positive testimonials from Internet acquaintances, as I have received more than enough to be 1 million % convinced of the universal benefits of going GFCFSFCF. But, every once in a while I simply break down in tears when I get an Email or read something like your post. Maybe it's the fact that an innocent child is involved or that the individual has been suffering needlessly for sooooo long. Or maybe it is the statement that the person has not been able to find a doctor that knows this stuff, which triggers a reaction of frustration. But many times these tears come when reading a testimony like yours right after writing an Email to someone else about how God's wisdom changes everything.

You are right: The doctor support for this approach is practically non-existent. I used to actually persecute them for this until I realized (was shown) that I was just like them for the first twenty years of practice. It is our training. We are not taught this stuff. We are, in fact, trained to think very differently with emphasis on making the diagnosis so that we know what drug to reach for to treat that problem. "Now you feel it, now you don't" is the concept, sorta like the magician and that white tiger....now you see him, now you don't. But is he really gone? Nope. He's back stage and sometimes even attacks the magician. Hmmm... The root word of "pharmacy" is pharmakeia, which means........magic (sorcery, witchcraft). There is some truth in that today, with many drugs doing little more than reversing normal symptoms to the ultimate detriment of the patient. Not all drugs fall into that category, of course, but a rising number of newer ones do, with some being recalled just before they hit the market. Scary stuff.

Thankfully, a paradigm shift in our medical thinking is now in full swing with this nutritional information being a HUGE part. There IS an alternative to drugs that have as their side effect the very symptoms for which that patient is being treated (e.g. neurontin and seizures). But if people really can't see that fevers are a good thing and help fight infections or heart burn is a negative reaction to something they ate, then how long will it take for this shift to take place???

We just have to keep fighting the good fight and doing it on all fronts, both in the public's eye and behind the scenes in the medical professions. This is only going to completely turn around when the doctirs are all on board but I can tell you that THAT glass ceiling is VERY thick. In the meantime, we become our own best medical advocates and do our homework. Thank God (literally) for the Internet...and forums like this one.

Please keep in touch,
John

Hi Dr John,
I don't want to burst the bubble just yet, as my daughter had a couple seizures this past cycle. I know many of the triggers and certainly having a teen dealing with this disorder does not make it any easier. Perhaps she needs a few of these episodes to be a believer.
I was wondering though about doctors unwillingness to buy into this idea. Curious to know if it is a personal thing. Because if it were such an easy answer as nutritional changes, then they too would more than likely have to make those changes themselves. I have had a sister say to me, it is so much easier to pop the "red" pill. I don't believe there are many people that have been unaffected by "disease", or maladies, and if dietary changes would cure them... Oh my, but that is far too difficult. My life is hectic anyways, and I like the food that I eat.. I want to be able to go out to my fave restaurant... what no ice cream? .... and so on....
Our new neuro said in our first appt that she would have difficulty giving up her soda. Excuse me?... we are talking to someone with a seizure disorder and there is a direct connection.. Wow. I will have some teaching to do.
She states in her bio that she specializes in hormonal seizures, and yet is not a hormonal specialist... .again Wow. Yet she is far superior than those that we have dealth with this past year.
It is a puzzle and finding the right pieces sure is a guessing game. Your information though makes the best sense to me. As you said once.. common sense. Listening to that, and motherly instincts has been my guide.
Thank you for that.

RobinN
Have you ever seen a Dr.(even with the "red pill" working)tell you NOT to come back in 3-6 mo.? They need to protect their practice.And their income.

Hi Dr John: I would like to know if one can have goats milk yogurt on this diet?
You say no dairy does that include goats milk yogurt ?
Or just cows milk?
I have just started this diet and my husband says it means cows milk . BUt I would like to make sure.


Thank You
Riva

DeeBee - very true

John - another two cycles without incidents. Diet good and seizure med's still at 1/2 theraputic dose. I truly attribute the positive results to nutritional changes.

Riva - I am under the impression that goats milk has a much lower % of casein than cows milk. We use goat milk mozzarella cheese sparingly.. maybe once or twice a month on a small pizza. Personally my thinking is if that is one infraction, try it and if you see negative results you will have your answer.
I am sure Dr J will come by and give you the bigger picture. One that I am just beginning to see.