Epi Improved w\gfdiet-md report

[LivingFruity]

It may be that the diet is lacking many of the additives and foods prepared in a way that they trigger chronic inflammation.

I believe this is why raw foods works. Elijah is not being exposed to triggers in his diet. Besides leaving out all the additives, we're getting the highest amount of nutrients possible from our foods by not over-heating the food. A proper balance of nutrients play a significant role in seizure control.

[LuvMyTwins]

The raw food diet is a Godsend! Here's the one thing to be careful of if you take medications: Many more BMs Now, I'm happy as a clam over that, but need to be careful with XR tablets (Tegretol) as the tablet can go out before it's finished. Thus, less meds. Yet, as my body has gotten used to the raw food, normalcy has set in. So, watch your intake!
Another great idea for filling up and getting a ton of vitamins, protein, etc are green smoothies. Basically take Fruity's smoothy and add leafy greens.---LMT

[LivingFruity]

Another great idea for filling up and getting a ton of vitamins, protein, etc are green smoothies. Basically take Fruity's smoothy and add leafy greens.---LMT

Thanks for bringing up green smoothies I love adding a couple large handfuls of spinach to my smoothies. This is an excellent way to up the vitamins, protein, and minerals. Yum!!!

[RobinN]

Rebecca's pediatrician told me that the iron in spinach is not absorbed well by the body. I looked it up and found this to be true. Any ideas as to how to make it more so?

[LuvMyTwins]

I used to love spinach, but now have to mix it with other leafy greens such as kale and collards. When I do this in a daily smoothie (1quart, 1 lb. kale) I get more than enough.---LMT

[Zoe]

I used to love spinach, but now have to mix it with other leafy greens such as kale and collards. When I do this in a daily smoothie (1quart, 1 lb. kale) I get more than enough.---LMT

Kale is too strong for me. I like the spinach juiced in my vita mix with carrots though.

[LivingFruity]

Rebecca's pediatrician told me that the iron in spinach is not absorbed well by the body. I looked it up and found this to be true. Any ideas as to how to make it more so?

To improve absorption of iron, I heard that it should be eaten with foods that are high in vitamin C, such as citrus. The vitamin C aids in the absorption of iron.

Other foods inhibit the absorption of iron. These are dairy products, tannin (in tea), phytates (in unprocessed cereals and bran), and some spices (such as oregano). As little as one glass of milk will cut your body's ability to absorb iron in half.

Spinach is not my only source of iron. Many other fruits and veggies contain iron (even bananas).

For the first time in my life, I'm not anemic. I believe my body is able to absorb all the iron it needs from my raw food diet.

[Zoe]

To improve absorption of iron, I heard that it should be eaten with foods that are high in vitamin C, such as citrus. The vitamin C aids in the absorption of iron.

Other foods inhibit the absorption of iron. These are dairy products, tannin (in tea), phytates (in unprocessed cereals and bran), and some spices (such as oregano). As little as one glass of milk will cut your body's ability to absorb iron in half.

Spinach is not my only source of iron. Many other fruits and veggies contain iron (even bananas).

For the first time in my life, I'm not anemic. I believe my body is able to absorb all the iron it needs from my raw food diet.

Thanks for all the information Sarah! Keep it up, you may convince me. Just adding in a few more raw veggies is making a difference. I also read that vitamin C improves absorption of iron.

[googly389]

I really hope this GFD is my ticket. I started it last Saturday and have been obsessively checking labels. My biggest concern is will it work for temporal lobe epilepsy, the kind I suspect myself of having. I was never diagnosed since I have a lamebrain for a doctor, but after researching it appears (I strongly emphasize that word) that I have Mesial Temporal Lobe Epilepsy with Hippocampal Sclerosis. Now that's just my educated guess even though I don't fit into that 1/3 of patients that had this as a result of febrile seizures (I never had any insults as far as I'm concerned growing up).

Now, my complex partials were always brought on by poor sleep it seems and so far I really can't tell if the diet has worked or not in this short span of 5 days. I am however experiencing more energy and better alertness, and even though I am exhausted from my job (4 AM-8 AM) right now, I don't have that lack of focus/confusion aura I get which is my only symptom although I'm on Depakote. So, the bottom line is, I really hope this diet works for the temporal lobe epilepsy+HS crowd and not just the Occipital bunch!

[LivingFruity]

I'm glad you're already noticing improved energy and focus since changing your diet. I hope you begin to see positive results in relation to the complex partials. Good luck

[googly389]

I'm glad you're already noticing improved energy and focus since changing your diet. I hope you begin to see positive results in relation to the complex partials. Good luck

Thanks for the support I'm hoping it's not placebo. The first day was hell though! I was depressed and moody and craving mcdonalds and all the junk I was withdrawing from. The cravings have just now subsided.

Just to be clear my complex partials are controlled on the meds (*knock on wood*) but my simple partials still occassionally come and on a rare day I'll find myself on the threshold of having a complex (see stomach rising) but I'm able to calm myself and control it somehow (*again I knock on some wood* lol) and take a nap and myself feeling hungover when I wake up but good. I'm going to be patient, since I know this diet may take a while. Robin and I use to talk about this when I tried for a month back in August. Where are you Robin? I'm back lol.

[Zoe]

Thanks for the support I'm hoping it's not placebo. The first day was hell though! I was depressed and moody and craving mcdonalds and all the junk I was withdrawing from. The cravings have just now subsided.

Just to be clear my complex partials are controlled on the meds (*knock on wood*) but my simple partials still occassionally come and on a rare day I'll find myself on the threshold of having a complex (see stomach rising) but I'm able to calm myself and control it somehow (*again I knock on some wood* lol) and take a nap and myself feeling hungover when I wake up but good. I'm going to be patient, since I know this diet may take a while. Robin and I use to talk about this when I tried for a month back in August. Where are you Robin? I'm back lol.

The GFD diet is NOT a placebo. You can go to PubMed and see that looking at the medical journals. My seizures originated in the right temporal lobe-and the GFD helped put and end to them-seizure free since July, 1998. If you haven't been there, check out http://www.celiac.com. Do a search there on recipes. You may not be as limited in the diet as you think right now.

I've gotten into buckwheat lately as a super food that is gluten free too. I just posted some pretty easy recipes using buckwheat including gluten free buckwheat pancakes (link below). The pancakes also make a good round sandwich bread. Having plenty of gluten free snacks to munch on may help you get through the cravings more easily. Hope you see a lot of improvement on the diet.
Zoe

[RobinN]

I'm going to be patient, since I know this diet may take a while. Robin and I use to talk about this when I tried for a month back in August. Where are you Robin? I'm back lol.

I see that you are back and on a roll
Just think of this as a new way to eat. This is good for you no matter if it helps your seizures or not (and it will !!!). I find it rather exciting to learn new ways to cook. I made wonderful chicken soup with organic stock yesterday. Put it with a salad for dinner and we were very satisfied.

Learn one new recipe a week, and within three months you will be flying and helping others.

[googly389]

Thanks everyone for the feedback and support. Like mentioned I was feeling very well all week up until Friday afternoon when I was accidentally glutened from a soup that had enriched wheat flour as an ingredient. I've been kind of sleepy since then. Other than that I have faith in it.

Sorry if there was a failure of communication Zoe, I wasn't calling the diet in itself a placebo, but the fact that for me maybe it was. You know, that initial "yea this is working" feeling I had since I do tend to exaggerate at times. Now you said you have been seizure free since '98? How frequent and severe were your Temporal Lobe seizures? Were you ever on meds? And if so are you off them now? This is very encouraging if it helped your temporal lobe epilepsy, because I've read somewhere that if you don't start the diet immediately after the symptoms then you're damaged and more than likely a GFD wouldn't help. That bummed me when I read it

[Zoe]

Thanks everyone for the feedback and support. Like mentioned I was feeling very well all week up until Friday afternoon when I was accidentally glutened from a soup that had enriched wheat flour as an ingredient. I've been kind of sleepy since then. Other than that I have faith in it.

Sorry if there was a failure of communication Zoe, I wasn't calling the diet in itself a placebo, but the fact that for me maybe it was. You know, that initial "yea this is working" feeling I had since I do tend to exaggerate at times. Now you said you have been seizure free since '98? How frequent and severe were your Temporal Lobe seizures? Were you ever on meds? And if so are you off them now? This is very encouraging if it helped your temporal lobe epilepsy, because I've read somewhere that if you don't start the diet immediately after the symptoms then you're damaged and more than likely a GFD wouldn't help. That bummed me when I read it

No failure of communication, I didn't realize you were referring just to yourself. It can be difficult to tell if you are feeling better from the diet or feeling better because you are doing the diet, time will tell on that. It's pretty normal to not know how to gauge what's happening, whether we are exaggerating, up or down.

I hope the diet works for you, have patience, be persistent, and give it a lot of time. While you are on the diet is a good time to do a lot of google searching. You posted that article a while back on gluten sensitivity and diminished blood flow to the brain that was so interesting. The problem with the brain was due to the long term effects of chronic inflammation which is the reaction to gluten sensitivity. We don't feel it, like an allergic reaction, and it does it's damage over time. So we may experience the inflammation as other symptoms, mood changes, seizures, arthritis, for example.

About my seizures. My seizures were the result of brain damage, strokes, spinal meningitis and brain surgery. I had two brain surgeries, one for the vascular disease, the second for seizures which did not work.

The right temporal lobe was removed and some of my prefrontal lobe. No part of my brain was spared from the meningitis and I now have a very large cyst where the temporal lobe was taken out. I lost some of my vision and about 40% of my hearing. I really was a "hopeless case" in terms of seizures.

After the second brain surgery there seemed to be some improvement but within a few years it was the same as before the operation. I was having around 3-5 partial seizures a day. I had quit taking the anticonvulsants because they didn't help and the side effects were so bad. I now think the side effects of the anti-epileptic drugs were triggering most of my seizures.

About 5 years after the failed brain surgery I started seeing a pyschologist to try to control my seizure symptoms, panics, hallucinations, etc.. I was on atenolol for my heart arrythmia which was triggered by the seizures.

The goal was to accept that the seizures were incurable, but to try and learn some techniques to manage the panic and heart spells that the seizures triggered. I began learning breathing techniques and self-hypnosis to bring myself back to normal when I had a seizure or felt one coming on.

This helped tremendously, but I couldn't figure out why I had a seizure almost every day , about an hour after lunch. I started seeing a hospital dietician, thinking I might have an allergy.

Mary, the dietician talked to me a long time about my diet. She suggested I eliminate milk. Her reason was that a lactose intolerance could set off a reaction like and epinephrine rush, triggering seizures and the heart spells. I noticed a big improvement almost right away. The worst of the heart spells stopped within a week or so while all the other partials continued.

Mary then suggested I try a gluten free diet, very new idea in 1996. She helped me plan my meals and I started the diet. It was probably a few weeks before I felt improvement but it was very clear. Not only was I having fewer seizures but my mental and emotional states were also improving (thinking now this must have been from the diet reducing the chronic inflammation).

Anyway I continued to improve, with the diet and the behavior mod for the next two years and in 1998 was almost seizure free. Just a lot of small partials, but nothing too debilitating. At that point I heard about someone taking taurine for seizures. I tried it and the effect was quite dramatic. My little partials stopped. About 2 months later I was doing well enough to get my first driver's license in fifteen years. I was then able to move from Seattle to Arizona. In AZ, I started learning yoga, and took neurofeedback training which helped me keep seizure free, even after a serious auto accident.

I've gone off the gluten free diet several times and start to have symptoms again, preludes to seizures, so I go back on the diet. My mental and emotional states are definitely much better on the diet and I've now got over ten years seizure free.

I hope the diet works for you, but if it doesn't, don't despair, there are other options and always things you can learn to manage seizures on your own. Right now, I'm writing an article about the Modified Atkins Diet for seizures, which is helping people who have intractable seizures. It looks like Johns Hopkins may still be recruiting for a new research study on it. So if the gluten free doesn't work the Atkins diet is an option too.

Don't buy into a lot of what you hear about brian damage and seizures; your brain can figure out how to adapt to damage and to heal. Just give it the care and nutrition it needs.

And give yourself a good long time on this diet, like a year at least, though you should see signs of improvement well before then.

Even now, this many years later, I have to make up a lot of gluten free snacks to take with me during the day, or I'm likely to cheat on my diet. And getting gluten, like you noted, makes me get really fatigued and sleepy too.

I read what you mentioned about being damaged, but don't let that bum you out. I think I read the same article; even if the brain is damaged you can still overcome the seizures. All the brain damage does is lower the seizure threshold, make you more likely to have a seizure than someone with no brain damage. However, there are no limits to how much you can raise the seizure threshold, and the diet is just one of many approaches you can take. Good thing you are here at CWE where you can sound out, or sound off, as needed. Keep on keepin' on!

[googly389]

No failure of communication, I didn't realize you were referring just to yourself. It can be difficult to tell if you are feeling better from the diet or feeling better because you are doing the diet, time will tell on that. It's pretty normal to not know how to gauge what's happening, whether we are exaggerating, up or down.
I hope the diet works for you, have patience, be persistent, and give it a lot of time. While you are on the diet is a good time to do a lot of google searching. You posted that article a while back on gluten sensitivity and diminished blood flow to the brain that was so interesting. The problem with the brain was due to the long term effects of chronic inflammation which is the reaction to gluten sensitivity. We don't feel it, like an allergic reaction, and it does it's damage over time. So we may experience the inflammation as other symptoms, mood changes, seizures, arthritis, for example.
About my seizures. My seizures were the result of brain damage, strokes, spinal meningitis and brain surgery. I had two brain surgeries, one for the vascular disease, the second for seizures which did not work.
The right temporal lobe was removed and some of my prefrontal lobe. No part of my brain was spared from the meningitis and I now have a very large cyst where the temporal lobe was taken out. I lost some of my vision and about 40% of my hearing. I really was a "hopeless case" in terms of seizures.
After the second brain surgery there seemed to be some improvement but within a few years it was the same as before the operation. I was having around 3-5 partial seizures a day. I had quit taking the anticonvulsants because they didn't help and the side effects were so bad. I now think the side effects of the anti-epileptic drugs were triggering most of my seizures.
About 5 years after the failed brain surgery I started seeing a pyschologist to try to control my seizure symptoms, panics, hallucinations, etc.. I was on atenolol for my heart arrythmia which was triggered by the seizures.
The goal was to accept that the seizures were incurable, but to try and learn some techniques to manage the panic and heart spells that the seizures triggered. I began learning breathing techniques and self-hypnosis to bring myself back to normal when I had a seizure or felt one coming on.
This helped tremendously, but I couldn't figure out why I had a seizure almost every day , about an hour after lunch. I started seeing a hospital dietician, thinking I might have an allergy.
Mary, the dietician talked to me a long time about my diet. She suggested I eliminate milk. Her reason was that a lactose intolerance could set off a reaction like and epinephrine rush, triggering seizures and the heart spells. I noticed a big improvement almost right away. The worst of the heart spells stopped within a week or so while all the other partials continued.
Mary then suggested I try a gluten free diet, very new idea in 1996. She helped me plan my meals and I started the diet. It was probably a few weeks before I felt improvement but it was very clear. Not only was I having fewer seizures but my mental and emotional states were also improving (thinking now this must have been from the diet reducing the chronic inflammation).
Anyway I continued to improve, with the diet and the behavior mod for the next two years and in 1998 was almost seizure free. Just a lot of small partials, but nothing too debilitating. At that point I heard about someone taking taurine for seizures. I tried it and the effect was quite dramatic. My little partials stopped. About 2 months later I was doing well enough to get my first driver's license in fifteen years. I was then able to move from Seattle to Arizona. In AZ, I started learning yoga, and took neurofeedback training which helped me keep seizure free, even after a serious auto accident.
I've gone off the gluten free diet several times and start to have symptoms again, preludes to seizures, so I go back on the diet. My mental and emotional states are definitely much better on the diet and I've now got over ten years seizure free.
I hope the diet works for you, but if it doesn't, don't despair, there are other options and always things you can learn to manage seizures on your own. Right now, I'm writing an article about the Modified Atkins Diet for seizures, which is helping people who have intractable seizures. It looks like Johns Hopkins may still be recruiting for a new research study on it. So if the gluten free doesn't work the Atkins diet is an option too.
Don't buy into a lot of what you hear about brian damage and seizures; your brain can figure out how to adapt to damage and to heal. Just give it the care and nutrition it needs.
And give yourself a good long time on this diet, like a year at least, though you should see signs of improvement well before then.
Even now, this many years later, I have to make up a lot of gluten free snacks to take with me during the day, or I'm likely to cheat on my diet. And getting gluten, like you noted, makes me get really fatigued and sleepy too.
I read what you mentioned about being damaged, but don't let that bum you out. I think I read the same article; even if the brain is damaged you can still overcome the seizures. All the brain damage does is lower the seizure threshold, make you more likely to have a seizure than someone with no brain damage. However, there are no limits to how much you can raise the seizure threshold, and the diet is just one of many approaches you can take. Good thing you are here at CWE where you can sound out, or sound off, as needed. Keep on keepin' on!

Wow Zoe, that is truly a blessing for you! So the surgeries and the meningitis was probably the main catalyst for you? If so then that is amazing that you overcame those hurdles.

For me, I have no physical cause at all for my past seizures. No known head injury, no real family history, or infections or febrile seizures. Maybe pesticides made me more susceptible? But it was always triggered by a bad night of sleep. In fact I felt spacey today (didn't sleep well last night. Woke up like 30 times) but it was so much less intense and normally I would have to sleep the aura off but today it has faded. I definitely believe the diet has something to do with that right off the bat as far as intensity goes.

[Zoe]

Wow Zoe, that is truly a blessing for you! So the surgeries and the meningitis was probably the main catalyst for you? If so then that is amazing that you overcame those hurdles.

For me, I have no physical cause at all for my past seizures. No known head injury, no real family history, or infections or febrile seizures. Maybe pesticides made me more susceptible? But it was always triggered by a bad night of sleep. In fact I felt spacey today (didn't sleep well last night. Woke up like 30 times) but it was so much less intense and normally I would have to sleep the aura off but today it has faded. I definitely believe the diet has something to do with that right off the bat as far as intensity goes.

Hi Googly,
Yes, the brain injuries were the main catalyst. But, my neice has celiac disease and the docs think I do to, so there's a good chance gluten sensitivity was also one of the causes.
It's great that you are keeping track of your seizures and "seizure behavior," things like how many times you wake and how the intensity seems to be changing with the diet.
Why not try a google search on "pesticides" "seizures". They work on your nervous system just like a nerve gas, so you are on to something that may have caused or may be triggering your seizures.
You may also want to look up on google "kindling" "seizures". Kindling is the standard model researchers use to study how seizures develop into a disorder over time.
We can use pesticides or gluten sensitivity as models. Suppose you were exposed to pesticides. At first, it may have been irritating, but not enough to cause a seizure. If you were exposed again, and then again, your nervous system will be overwhelmed and become sensitive to the pesticide. Over time, the part of your brain affected-like the temporal lobe will be damaged by the chronic irritation and beome hyper-reactive. This may form the point-the scar-where a seizure starts. When an area of the brain is damaged, it is unstable and the neuron's may not fire off normally. In this respect, physical damage from repeated exposure to something irritating your nervous system would cause your seizures-every bit as real as the damage done by strokes or meningitis.
This same scenario may play out with the inflammation triggered by gluten sensitivity. Plus, once an area of the brain is "sensitized" it is more easily disturbed by other irritants even if the original cause of the irritation is removed. Researchers would say that the repeated exposure had the effect of kindling a seizure disorder, starting the disorder, just as kindling wood is used to start\kindle a fire.
In this respect, there may be several triggers for seizures regardless what originally led to the problem. Keep in mind too, that the scarring is damage to the brain, it just isn't large and dramatic. It is just as important in terms of understanding where and how seizures may originate and how to go about stopping them.
What you are doing with the GF diet, is removing one of the possible irritants to your nervous system, so it has a chance to heal and recover. It is important to know that we do regenerate brain cells all the time, much brain injury can be overcome. Once the main irritant is removed, the body is better able to heal and recover.
It will be interesting to hear what you think when you look up more on pesticides and seizures and how you are doing with the diet.

[googly389]

I will definitely look that up soon. I know I had a lot of ear infections as a toddler. I was on a lot of antibiotics and my mother had me on a GF diet up until about 7-8 years old. Interesting. Now looking back I remember being around my aunt's business when I was younger quite alot. She use to have a small insecticide business (still does) and I remember them spraying my small house a lot on the inside to kill bugs. We stayed out while they did this, but our house wasn't that ventilated. My seizures started the fall of '99 when I was 10. Always complex partial until that one grand mal at 16. My meds have only allowed auras but I've increased the dose twice since '07. Does Taurine re-grow brain cells faster or something? If not, do you know of any supplements? Thanks Zoe

[Zoe]

I will definitely look that up soon. I know I had a lot of ear infections as a toddler. I was on a lot of antibiotics and my mother had me on a GF diet up until about 7-8 years old. Interesting. Now looking back I remember being around my aunt's business when I was younger quite alot. She use to have a small insecticide business (still does) and I remember them spraying my small house a lot on the inside to kill bugs. We stayed out while they did this, but our house wasn't that ventilated. My seizures started the fall of '99 when I was 10. Always complex partial until that one grand mal at 16. My meds have only allowed auras but I've increased the dose twice since '07. Does Taurine re-grow brain cells faster or something? If not, do you know of any supplements? Thanks Zoe

Have you done a google search on "pesticide exposure" "epilepsy"? That may give you more clues. Can you find out why you were on the GF diet and why you were taken off it? Be sure to do a google search on "taurine" "epilepsy".
Taurine is a very important amino acid. Many folks with seizure disorders tend to be low in it. You may want to also do a search on "magnesium" "seizure threshold". Any number of vitamin deficiencies can lower the seizure threshold, another reason diet is so important. There's a lot to learn about nutrition and seizures. It's a good thing we have the internet!

[googly389]

Just wanted to update everyone. It's been about a month and a day since starting the diet save a couple of minor slip ups. First week I felt instantly great and then the energy leveled out to what I expected still being on meds. I had to increase my dose of Depakote ER last August from 1000mg to 1250mg and after feeling a lot better recently after a couple of weeks GF I lowered it myself back to 1000mg. I've only had a few minor deja vu's since doing that but less intense and have not had my major auras yet *knock on wood* I have been getting at least 7-8 hours of sleep as well during the work week so that might be helping too. The only thing I notice since coming down on meds is I feel a little wiry and "unreal", but trust me it's not as intense as before and I WILL NOT go any lower on the meds without docs approval. Didn't wanna worry any folks lol.

I've also gained weight on the diet I've always been a skinny guy (underweight actually) and I jumped from 135lb to about 144 after 3 weeks! This might be an indicator I truly am allergic to gluten. Anyways, I look forward to six months from now when the diet should truly have enough time to work. I'm not going to get too high of hopes but just take each day as it comes and have faith my higher power will help me. Thanks all!