[GARD/GFCF] GARD diet testimonials

[DogtorJ]

Hi Everyone,

I didn't know exactly where to post this but after reading the descriptions of the various forums, I figured the kitchen was as good as any place to share this. [edit: I moved it to the new History Book forum - Bernard]

Here is a very interesting Email that I just received from one of my "E-clients" who is from the UK but who heard my lecture on epilepsy at last year's North American Veterinary Conference in Orlando. Small world, eh? I have been trying to help her with a family member's epileptic daughter. The young mother was a naturopath and was feeding her child a diet consisting "mainly of organic cereals, dairy products, soya products and pasta." I think most of you who know about my G.A.R.D. (diet) can now imagine how my eyes lit up when I read that! The little girl was clustering regularly, often shortly after eating, and experiencing frequent gastrointestinal distress (e.g. vomiting).

Well, she responded as expected. The interesting thing was her caretaker's response. She also includes a VERY interesting bit of medical history from the 1800's. Wow! And last but not least, we pulled off a "bank shot" by helping a few epi dogs. How cool is that?

As always, I hope this helps,

John

John B. Symes, D.V.M. (aka "Dogtor J")



----- Original Message -----
From: CLS
To: John B. Symes, D.V.M. (Dogtor J)
Sent: Tuesday, September 25, 2007 10:47 AM
Subject: Re: Topic: Epilepsy in infants


Hi John,

We are now into the seventh week after my first mail to you and also into the 7th week of the GARD diet for this little girl, L***

Here is a bit of an update: the diet plan was extremely well received, by both parents, and Lubi was symptom-free after the first week. Entering week three, the parents had decided to consult a child nutrition specialist (nurse) and were apparently (?) advised like this: "well, if you think this diet is working, then the best you can do is go back to normal food and see what happens - if she fits again - then you know...."
Parents did introduce normal diet again a day later, the following day Lubi had a seizure +vomiting, was taken to the hospital and the anticonvulsant dose was increased.

Parents re-introduced GARD diet again, Lubi had two more fits same week, and has now been symptom free for 2 weeks.
Now the nutritionist has been consulted again, and hair analysis and blood + tissue IgE tests are running. I do not know what to make of the evaluation of particularly those blood tests, because I am thinking simple: If a gut is damaged, and particles of whatever type get through the barrier that normally don't get through, then surely somewhere an immune reaction must have left its trails - so are any positive results specific and useful for this patient? I need to read more...

On a very nice historical or anecdotal level, I can't help telling you this little story: I am German and my German grandmother, a midwife, left me the second edition of Sebastian Kneipp, 'Das Grosse Kneippbuch', which was published 1903
Kneipp is still a household name in Germany, many hydrotherapy centres are named after him, and wikipedia tells me he was the founder of Naturopathy, my grandmother would have liked that!

Anyway, in this book there is a short paragraph on epilepsy. After describing the various "types" of epilepsy he basically decribes that this disease is due to pampering and eating "Kunstmehl" ( processed fine white flour), and he "can clearly prove that, because this disease you only see in town people because they eat this type of bread whereas the peasants grow and bake and eat their own bread and get all the goodness out of it ...processed flour is not good for anybody.. and I did not see this disease in my younger years.."
Rather interesting I thought, for having noticed and noted this around 1880.

And, last not least, on the veterinary level, I have two cases of young fitting labradors on my list, where I finally could persuade the owners to go for the diet rather than grab the epiphen bottle- so far- so good!

So much for today, many regards, take care
C.

 

[execwife2002]

This whole thing on processed fine white flour is there consistency to someone who is only having a seizure maybe every 3-5 weeks? Please not that the majority of the seizures are nocturnal. We have not been able to discover any kind of a pattern related to when the seizures are occuring. We use to be able to guesstimate when another seizure would occur because they were clockwork, now it's any ones guess.(Did that all make sense to all of you?)
Marian

 

[RobinN]

Marion - a summary of the situation... to my knowledge, is that if the intestinal "system" is not healthy, then there is absolutely not way that required nutrients can be absorbed into the brain. That happens at the point of the villi that live in the intestines. Certainly processed foods contribute to the unhealthy environment.

 

[RobinN]

After beginning the diet, (and bio-identical progesterone) we had three wonderful months of no seizures. I have yet to replicate this, but I am dealing with a teenager that thinks a little bit here and there "will not kill me".

Sometimes I want to throw the towel in, until she is fed up and wants a change. Yet I have full belief that this is a nutritional issue and can be corrected through diet.

 

[DogtorJ]

This just in from Deutschland

Hi Everyone,

I have been taking a break from Internet work and am still doing so. But, I got a few great GARD testimonials recently and wanted to share them with you. I hope they help.

John

**************************

Dear Dogtor J,

My name is K***. I’m living in Munich, Germany and I’m a psychologist.

I’ve got a son, 24 years old, who has been suffering from epilepsy (idiopathic, with drug history). About a month ago a friend of mine told me about your web site, and I’ve read some of your brilliant issues meanwhile. My son has been doing the G-A.R.D. for four weeks now (me too), and he has recovered greatly. He is free from seizures and insomnia, and above all he’s got the insight, what it is all about. So thank you very much!

Nevertheless I’ve got still two questions to you. My son is still taking a (light) anticonvulsivum. Have you got some idea about discontinuing it? In other words, when can the glutamate blood and brain levels be expected to have come down to normal? The other question: What is the possible role of hypothyroidism in epilepsy?

As you want your insights to be known to people, I send you a translation of “The Epilepsy Diet Simple Made” (I’ve added definitions to all conditions mentioned.) If you want you can use it for German speaking folks.

I would be happy to hear from you!

K***

***********************

My Reply:

Hi K***,

It's great to hear from you. I'm so glad that you found the Site and that this concept has been helpful for your son. The number of people doing this is growing and it is getting very exciting to see the medical profession approaching this topic now. The ketogenic diet was their doorway but it is too narrow. They have now seen that the modified Atkins diet is helping without ketosis...another major step forward. When they finally grasp exactly why IT helps, they will be at the new doorway. Kinda hard to believe that its 2007 and we don't already understand this stuff, isn't it? But hey, the times they are a changin'

On the elimination of drugs, this is where things get very "tricky" for me as a veterinarian. Of course, I can do nothing that suggests the practice of medicine. It has been a fine line but I have been able to walk it pretty well. The sad thing is that there is a catch-22 here: The doctors are the ones who should be helping you wean off the drugs BUT they aren't believers in the dietary control...yet. So, it becomes a personal decision that, in this country, can turn into a highly publicized mess if things didn't go well for one reason or another.

As you have probably read, I am now a firm that viruses are the ultimate "cause" of epilepsy...the thing that distinguishes whether one person has epilepsy rather than another who is (apparently) doing the same thing as far as diet and environment goes. Everything I have read and studied over the past 7 years suggest this to me. There are over 25 viruses known to cause seizures in people, mist of which are ubiquitous and latent. Epilepsy then becomes a syndrome (like so many other conditions, including autism) and results from the diet-induced malnutrition, the bombardment of tissues (brain, liver, etc) with damaging lectins/estrogens/excitotoxins, the failure of the immune system, and the subsequent reaction of those latent viruses in the glial cells and neurons.

SO, when can you take an individual off the meds??? The general answer is "When you have done enough right." I know that is vague and it's meant to be because each individual is going to be different. I am convinced that some of my epileptic dogs could be weaned off meds within days of starting the proper diet. Others need time to get healthy enough for this process.

I tell my veterinary clients that I like to see the pet go either two seizure cycles or two months before weaning the meds. We then cut one dose (AM and then PM) at a time in half per week until they are off the meds. I may go longer between reductions in some of my more serious cases. If we encounter a seizure, I stay at that dose to see if they persist and have them remain at that dose until we've gone through a seizure cycle without incident. It's pretty much a common sense approach knowing that the brain has become accustomed (adapted) to the drug and that it needs time to re-equalize to their absence.

We still use a lot of phenobarb in dogs which has the least overall side effects BUT causes the most "uploading" of neurons, in which the neurons increase their sensitivity in an attempt to overcome the depression caused by the drug. But of course, that is why we see so many failures in epileptic dogs that don't have a diet change instituted. The drugs come back to bite us as these neurons are becoming more and more intolerant of the excitotoxins (and lectins) in the food. I have heard about the "zaps" people experience if they come off Paxil or similar antidepressants too quickly. Makes sense.

So, this becomes a personal decision and really should be done under the guidance of a neurologist who is on board with the diet. Although they are few and far between right now, they are becoming more numerous as of late here in the US. Your guys may be waaaay ahead of us like they are in so many other things.

Hypothyroidism clearly lowers the seizure threshold. The mechanism is probably multi-fold, including the slowing of metabolism/cellular function (e.g. liver cells that are converting glutamate to glutamine and doing so many other things), the immuno-suppressive effects of low thyroid, and even the "uploading" that the neurons must be doing to overcome the depression associated with hypothyroidism. Hypothyroidism is the single-most common cause of dogs not responding completely to the diet change (other than cheating). I have now had numerous dogs that had lingering seizures that vanished when we discovered low thyroid function and started supplementation. Concurrent liver disease is the second most common, which makes sense once we remember just how critical that organ is.

The translation is great and I really appreciate the efforts you have made. Again, there is rather rapidly growing number of people who are doing this diet now with great success. In fact, I have yet to get an Email from someone who said that they have tried it without measurable success in either a dog or human. Most have just needed refinement of the diet or some things made clear to take them to the next level of improvement. One woman was doing quite well but having a few seizures here and there until she realized it was all of the macadamia nuts she was eating. Once she stopped those, her seizures vanished. They would have probably eventually faded away as her neurons became healthier and healthier from avoiding the "big 4" but as it was, the amount of glutamate/aspartate in those nuts was pounding away at her compromised glial cells triggering the seizures just like a heavy dose of MSG/NutraSweet would do. It does seem to be that simple sometimes....thank Goodness.


John

 

[DogtorJ]

6 year-old's success and a fired up Mom.

Dear DogtorJ,

Thank you so much for replying to my post on Oprah.com, "Gluten-Free Diet...Let's spread the word!". My name is R***, and I am the mother of a 6-year-old boy who was diagnosed with Childhood Absence Epilepsy in February 2007. During this same time, one of my closest friends was diagnosed with celiac disease, and she also has a 6-year-old boy who has experienced unexplained neurological episodes and migraines, and has since tested positive for the celiac gene. After much prayer and many tears, we were both blessed to discover the gluten-free diet this past March, by finding your website during our search for answers.

Fortunately, my son's wonderful neurologist listened to me, and agreed to treat the epilepsy with diet alone, instead of medication. Two weeks after implementing the GF diet, my son's seizures disappeared, and he has remained seizure-free since March. We have also switched from cow's milk products to goat's milk products, which have been working for us as well.

I have been intending to contact you regarding my sons' progress, but was wanting to wait until his 6-month neurology check-up. However, after Jenny McCarthy and Holly Robinson Peete both brought the gluten-free diet to light on the the Oprah autism episode, I was moved to respond with our own success story. I was becoming a little disappointed when my post on the message board wasn't receiving the attention I'd hoped, but imagine my surprise when I checked back last week...DogtorJ himself had replied!

Our follow-up neurology visit was two weeks ago, and the doctor is still very pleased with the results of the diet. He is wanting to explore the treatment further, and has spoken with the hospital nutritionists, as well as some of the other doctors he works with. He is interested in the possibility of conducting a study, and wants to look into applying for a grant from the NIH. If that approach isn't successful, I have offered to contribute to the cause by using my fund-raising and public relations background, and becoming involved with our local epilepsy foundation. I think God had plans for me when I worked for a local non-profit organization over 10 years ago...

Every week I meet someone new through my son's school that has a family member who has autism, Asperger's, epilepsy, or some kind of digestive problems. Another of our close friends has an 8-year-old son who has experienced chronic constipation for several years, and has recently developed more serious bowel problems. We finally convinced her to try the GF diet, and his symptoms have almost disappeared. (We're working on getting her to eliminate casein as well..."baby steps"!) It turns out that relatives in their family have a history of these health issues, and have been clueless about what to do about it. Many of them have been satisfied with a lifetime of laxatives. Interesting to note...although initially skeptical, my friend's pediatrician has a son with autism, and we're hoping he'll make the connection.

The friend I mentioned earlier who has celiac disease is also amazed at how many people suffer from these afflictions. At her son's small private school, at least 3 other boys in his class are on the GF diet for various reasons, and the new school administrator has celiac disease as well. It floors me when I think that just seven months ago, we didn't know anything about these problems, but now we're meeting someone connected to this every time we turn around. Hopefully every connection we make will have lasting results. We feel this is just the beginning of something very exciting that will happen in the not-so-distant future.

I want to know what we can do to get the gluten problem addressed on a national level, not to mention all the other important factors discussed on your website. I will do whatever it takes to help raise awareness, but my grander plan is to get all that unnecessary gluten out of our food supply! I want excitotoxins erased, and our nutrition "experts" to be enlightened that these FDA-approved ingredients are destroying our health. I know the celebs' brief mention of the GF diet on the Oprah show and Larry King Live (last week) are good places to start, but where do we go from here?

Thank you for taking the time to contact me, and I look forward to hearing from you soon.

Sincerely,
R***

 

[RobinN]

What an inspirational story, John. Thanks for sharing it.
If only all neurologists would be willing to be this supportive.

 

[DogtorJ]

Deutschland Part 2

Hi Robin,

Fortunately, more and more neurologists ARE looking at the benefits of diet. The ketogenic diet and now "modified Atkin's diets" have been a good gateway into this concept. They just need to grasp the full nature of the damage being done by lectins, both to the gut itself and the tissues they attach to once they enter the system, including neurons. Did you see Larry King the other night as they were discussing gluten-free diets for autism. Hallelujah!

Here is K***'s response to my last letter with an update on his son.

John

*****************

Hi John,

I just came home and found your e-mail. Thank you!

All I’ve read from you DOES make sense. I see it this way: For 1500 years in our culture the basis of “science” had been beliefs. Only when the Christian church lost some of its power and men woke up a bit in the 16th/17th century, modern science could start out with observation. But this is the ruling methodology still today. Of course modern science has been very successful and helpful to men, but it has not really made a better world. Observation, defining problems and proving out theories, is vital of course, but true science starts out with insight. Only insight involves the spirit of men, his consciousness and ethics. So only this kind of science can be successful AND make a better world. I see, you’re on this line. That’s great! Congratulations!

Your epilepsy diet is working very well on my son. He has been free of seizures for nearly two month now. Insomnia, restlessness, motoric and verbal hyperactivity have vanished. I’ve seen a doctor the other day. I told him about you and your concept, and it makes sense to him, too. So he will help us, to gradually discontinue the anticonvulsive.

It’s easy to find out foods which contain gluten, casein, soy or corn. It’s also easy to find out glutamate/aspartate ADDITIVES. The problem is the NATURAL glutamate contents of foods. If you’ve got any idea about that, please let me know. Also you say seeds are high in glutamate. That’s why I cut out the seeds of tomatoes, cucumber etc. You think that’s useful? As to corn, I’ve found corn stuff labelled gluten-free. You think, that could be okay?

With kind regards

K***

 

[DogtorJ]

Checking In- G.A.R.D. Testimonials

Hey Bernard,

Just wanted to check in. Testimonials for the GARD continue to pour in and I have been meaning to touch base with you for some time. I am on my way to a media event in NYC to promote the dietary information that I have learned and assimilated into the GARD.

People are recovering not only from epilepsy but also peripheral neuropathies, MS, rheumatoid, chronic pain, severe depression, long-term allergies, and much more. I was just contacted by a woman who is now 5 years seizure-free on the diet. I have a case of a 4 year old boy who was severly afflicted by epilepsy and is now over a year seizure-free and being studied at the Cleveland Clinic. His father now speaking at the local epilepsy association on the topic.

And here is my latest testimonial Email. I hope this helps. I know you have had mixed feelings about the diet inn the past but it has now helped countless epileptic pets and a rapidly rising number of people and I feel certain will become mainstream medicine in the very near future.

Keep in touch,

John

**************

Dear Doctor John,

This month marks the second year that I have been almost seizure-free thanks solely to you. Sure, I have had three of them, two on holidays in 2006 and one in July 2007. The most recent seizure happened during a "health recovery class" at Thai Chi. It was a strange one because I had no warning. I usually know something is wrong about 30 seconds before a seizure begins; long enough to allow me to lie down on the floor. This one didn't give me any warning and I woke up on the floor vomiting. We have a medical doctor who leads the class and she told me that I had had a seizure and that she thought it was precipitated by the vigorous exercise. I have never heard of that causing a seizure. I could have sworn that I had just fainted. Who knows? Yet I can't explain the vomiting.

I have only hinted to my doctor that the solution to my seizure 'cure' is the fact that I'm following your G.A.R.D. program even though I have have not been diagnosed celiac disease. My philosophy is, if it works, then let it work; don't mess with it.

All medical doctors in British Columbia have recently been required to deal with "complex patients", those with multiple conditions. Since I have diabetes, hemiplegia, osteoporosis, seizures and several other problems, I qualify.

One of the tasks the doctors have to do is to e-mail all sorts of medical information and he has to meet with me to discus my problems and review the information he has sent me (as if doctors haven't enough to do already). I plan to inform him during that meeting that I am virtually seizure-free because I am treating myself as a celiac. I am eating according to your guidelines (G.A.R.D.) and I run into trouble if I don't.

To me and my wife (M.) you are our hero and we hope that you are convincing more and more doctors that diet is the better way to deal with seizure problems. However, another group that should listen is the dieticians. I have been in the hospital a couple of times last year and the dieticians there don't accept the need to restrict glutamine or aspartate from food. Their reply to the request: "What do have left to eat then? Man, most of the restaurants in Nanaimo have at least one, if not more, waitresses that know what you're talking about when you talk about a gluten meal. Why can't the dietician wrap their minds around it.

With many fine wishes,
Norm J.

 

[Bernard]

Awesome! Thanks John. You might want to bookmark this thread for future use.

 

[DogtorJ]

The "Cause(s)" of Epilepsy

Hey Bernard,

Thanks for the reply and the support. We'll see what happens at the Media Summit in NYC at the end of this month. I have some people who are very excited about this, as celiac disease awareness, food intolerance in general, and autism/epilepsy/neurodegenerative diseases are all on the rise. Plus, I will be helping to expose the pet food industry for what it is....horrible. The media loves anything to do with animals.

Granted, diet is not the only component of these syndromes of epilepsy and autism. But, it IS the single most important part that is under our immediate control. The air quality issues loom bigger and bigger and anything we call a "carcinogen" is a possible player. I am thoroughly convinced that idiopathic epilepsy is ultimately viral in origin, as there are over 25 viruses known to cause seizures in people, with many being ubiquitous, chronic and latent. Herpes is a big group (Epstein Barr, Simplex 1 and 2, Varicella...all of which are on the list of seizure causes) and the remitting/relapsing nature of these guys suggests that they could be involved in the episodic nature of epilepsy, at least initially...before we get loaded up with drugs (like neurontin) that change everything.

So, once we see the culprit as viral, "all we have to do" is identify which agents act as triggers or aggravators of these guys and eliminate them. This includes food lectins (e.g. those from gluten grains, dairy, soy, corn), estrogens (with the same four foods being the principle sources of them, too) and man-made chemicals (air/water pollutants/carcinogens, including mercury and fluoride), etc. I would love to take the worst epileptics and move them to a deserted island, feed them properly, and give them purified water, proper sleep and exercise, and appropriate supplements to treat their acquired deficiencies and watch what happens. I think that we would see miracles as our brain and immune system improve...and the viruses realize that they don't have to rebel anymore.

After all, viruses are just "adapting" to what we are throwing at them. That is what they were created to do...adapt, and thereby help us to adapt to our ever-changing environment. Without viruses in nature, the entire ecosystem would collapse, including our bodies. (Up to 45% of our DNA/genetic codes is VIRAL information.) We don't like seizures, but I am convinced that they serve a medical purpose, just like the rest of our symptoms do. We could easily be shooting ourselves in the foot by trying to squash every single seizure. I do know and understand the rationale behind this in people. Who can afford to have a seizure while driving? But the epileptic dogs show us how seizures start out more gradually, even as infrequent as once or twice yearly, and gradually worsen over time. We see patterns in vet medicine that the human docs do not get the luxury of seeing because they are soooo quick to medicate people.

Again, I understand why this is but they are missing out on some very important information to be gathered by studying these patterns, including the 4-6 hour interval between eating and seizing (which is classic for the unmedicated dog) and the seasonal nature of seizures that I write so much about now. Know anyone who has muuuuch worse seizures from November to April than they do during the longer days from May to October??? Know anyone who has had a major worsening of seizures in the last month or so (Feb-March)? Gotta love the serotonin connection.

Again, I appreciate your support and efforts. Your site provides a great service. I look forward to continuing to promote epilepsy awareness in both research and the public eye.

John

John B. Symes, D.V.M. (aka "Dogtor J")

 

[RobinN]

So glad to hear news moving in the right direction.

You started me on this crusade of nutrition (and I will always be ever grateful for your generous consideration). I soon learned how viruses play a part in the bigger picture, and it makes so much sense in my families history of medical issues.

I look forward to hearing more about the Media Summit. Please share your thoughts when you have time.

Thank you for your generosity, John.

 

[DogtorJ]

Hi Robin,

It's great to hear from you! Thank YOU for the positive comments and encouragement. I'm glad that the word is spreading through your family. It is running like wildfire through mine and my new extended family (my daughter got married last month). Turns out, she married into a family of celiacs, including her new husband. He is doing GREAT on the diet (allergies, chronic fatigue, IBS...the usual suspects).

And I'm glad that the viral model makes sense to you. I spoke on this specifically at this year's North American Veterinary Conference in Orlando. It made sense to them, too. It's just that most, including myself for years, don't think of viruses from the right perspective. As it turns out, they are one of those things that were meant to do good but were forced into becoming "pathogens" by our actions. All we have to do is see the good that they do and HOW they do that good and we can see how WE made them bad.

Once again, "We have met the enemy and he is..........us." (Pogo)

Bernard just sent me a great link to a group that does grants for studying things like The G.A.R.D. It's time to explore that avenue. Perhaps some media coverage will help. The pump has been primed by the (limited) success of the ketogenic and modified Atkins diets, both of which limit many of the things in The GARD but for different reasons. Once we see the mechanisms behind lectin damage, we can see that some will not respond until these antibody-sized proteins are completely eliminated, not just limited. I tell people to think "peanut allergy" in order to get a feel for the degree of sensitivity to these proteins (gluten, dairy, soy, corn) that some experince. Gluten kills neurons as can the others. And we are talking about VERY small quantities in some.

Keep in touch.

John

 

[RobinN]

I have decided to bump this up for those considering medical issues that perhaps could be related to food sensitivities.

 

[RobinN]

Great new website Dogtor John!
I recommend that you all check it out. Early on it was my first introduction how nutrition could be used to break the seizure cycle.

Dogtor John's website

 

[Molly97]

I wasn't aware that he had it partially up and running. Thanks Robin.

 

[occb]

Not E-related, but certainly pet and wheat-related.

Our cat started scratching around his ears, which spread to his chin, really gouging out his skin (poor little guy) This started about two weeks after we switched to wheat litter. The vet told us it's an allergy and recommended hypoallergenic food. When I asked if the litter could have been the last straw, so to speak, she said she's seen cats allergic to it before.

So we're weaning them on to the hypoallergenic food, which, luckily, both cats like (the other is a picky eater), but we're not sure what to do about the litter. I'm allergic to regular litter, the cats don't like the pellet-shaped litter (which rules out hypoallergenic newspaper), the pine sawdust got everywhere and made us itchy, so I think that pretty much leaves corn and silica gel... will the corn be a problem, or should we be switching to silica gel?

 

[Bernard]

Good luck!

 

[Zoofemme]

The corn is probably cheaper than the silica not to mention more eco friendly I would think. It is probably going to be a case of try and see. A friend of mine went through this...same symptoms. Drove her nuts cause they kept doing minor surgery to clean the wound on her cats chin. They finally figured out it was his plastic food and water dishes he was allergic too :roll:.

 

[occb]

Seriously? I'm changing the food dishes as soon as I can... just in case.

lol Bernard!