Gluten Free diet = No seizures!

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KelVarQ

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I'm perplexed as to this Gluten Diet and gaining some seizure control. I'm actually shocked as I started the Gluten Diet (100%) for maybe a little over a month and it's working! I couldn't go more than 3 nights in a row being seizure free and now I've had only one in 2 weeks! The one I did have was tiny and only lasted a couple seconds too and I'm thinking it had to do with Peanut Butter (although Gluten Free Peanut Butter I think peanuts may be a trigger for me as well).

YES, it's all good and I'm delighted but completely shocked that perhaps it does have to do with being Gluten Free. I know I read a lot about it and you've all told me about it, but I still sit here shocked that I think it's actually working for me.

To those of you who haven't tried the Gluten Diet, give it a shot and give it some time to kick in. My seizures are definitely not nearly as bad or as frequent and hopefully knocking peanuts out (100%) will do the trick for good. Now that would be nice : )
 
Yay! Always good to hear positive results!
 
That's encouragement enough for me to keep on keeping on with the GARD diet we've begun. The first step has been going gluten-free and milk-free. Soy and corn will come after, if need be.
 
Such awesome news.
I wonder if we can get some foundation to accept our personal research.
So glad to know that more and more are taking the risk.
 
Awesome! I'm moving this thread to the History Book forum. If you feel inclined, please consider answering these questions.
 
Quick Update - Gluten Free is still working!

To all,

Quick update...going on almost 2 months of being Gluten Free and had 3 seizures during the 2 months and each time I think it was due to accidently having Gluten. (Still learning). Prior to Gluten Free Diet was having approx. 6 seizures a week.

If you haven't tried the Gluten Free Diet I beg you to try it! I wasn't diagnosed with Celiac but it's working for me. (Although doc said maybe if I had a bowl of pasta prior to the blood work it may have come back positive, but either way it's working). Plus, I've never felt better! I no longer get lethargic during the day and even my husband says he notices a difference even in my eyes whereas I just look ALIVE! Also, there's a great documentary called Food Inc. Although it's quite sad it is an eye opener in regards to our food industry. I'm convinced we're being poisoned and now that I see what Gluten is capable of and watching this show I'm finding a local farmer, obviously staying away from Gluten and only buying organic! When I have a year under my belt of being seizure free with this Gluten Free diet (which I totally intend to) I will do whatever I can to let the world know about it. I think it's scary that not even my neurologist mentioned this diet. Thankfully I have a great primary who embraces the holistic approach and a great site to come an educate myself. Thanks to you all and of course Bernard for starting this site!
 
I am so darn excited for you. Great feeling I am sure.
 
Yes Robin and Thank You because you were definitely one of the ones who encouraged me to try it. I also want to thank you for the article you sent me in the last posting entitled, "What you don't know might be Killing You". It was very informative and it's actually quite sad. It's sad that so many people are sick and in many cases it's all a matter of eating certain foods. Who knew? You would think our grocery stores are safe and yet I now have a whole new perspective. I look down the isles and it's like poison sitting on these shelves that we EAT EVERYDAY! It's absolutely mind boggling to me but luckily I no longer feel the least bit slighted that I can't have certain foods because at this point I don't even want it.
 
Answerss To Alternative Approach Questions

What types of seizures (and how frequent) were you experiencing before starting the alternative treatment?
First I had TC's, SP, CP, etc. and had RTL surgery, which I was seizure free for approx. 4 years. Starting having nocturnal CP's in 09' and went back on Keppra. Took myself off Keppra (NOT RECOMMENDED) and I was taking about 6 seizures a week and sometimes 2 in one night.

What AEDs (medications) had you tried prior to the alternative treatment? Dilantin, Tegretol, Lamictal, Keppra

How long did you try the alternative treatment? (Not applicable to Lobectomy or Gamma Knife) I've now been on the Gluten Free Diet for almost 2 months.

If the treatment requires active participation, how diligent were you in applying it? At first I was dabbling and seizure control wasn't going so well. Then I went 100% Gluten Free about 2 months ago and my seizure control is better than EVER! In 2 months I've had 3 or 4 and in all cases I believe it was due to accidently having Gluten (still trying to learn the diet). So I went from 6 a week to 3 or 4 in 2 months and again, I blame Gluten!

What changes (improvements or otherwise) occured with your seizure control with the alternative treatment? Seizure control is enough for me! Of course as each day goes by being seizure free I'm not so nervous about them coming on.

What (if any) adverse effects/events did you experience with the alternative treatment? NONE!!! It's all good and to be honest I never felt better. I now want my whole family Gluten free because I know it's bad. I can now tell immediately when I have something with Gluten because I instantly feel it in my head. I understand it effects the digestive system, but I feel it instantly in my head and perhaps because that's obviously my weak spot, which I think we all have a weak spot. I'm raving about this diet and think EVERYONE should go on. Again, I've never felt better and it's helping control my seizures! I'm looking to get a year of being Gluten-Free and seizure free under my belt before I start screaming off roof tops.

How much did it cost you to implement the alternative treatment? The Gluten Free diet is a bit more expensive. However, I don't cook and I know it could be cheaper if you prepare the food. For example: I will buy a loaf of Gluten Free bread rather than make my own. But, I do save money since I no longer want to go out and eat or grab a bite on the run. Not that you can't go out to eat because you can. It's hard in the beginning but it does get easier and to be honest I have NO DESIRE to even eat anything that contains Gluten because now that I can recognize the difference it's like the idea of putting poison in front of me and I have no desire to eat poison. So for me the diet is PRICELESS!
 
KelVarQ said:
...going on almost 2 months of being Gluten Free and had 3 seizures during the 2 months and each time I think it was due to accidently having Gluten. (Still learning). Prior to Gluten Free Diet was having approx. 6 seizures a week.
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Fantastic! :woot:

KelVarQ said:
... Also, there's a great documentary called Food Inc.
Click to expand...

http://www.coping-with-epilepsy.com/forums/f21/food-inc-8357/

KelVarQ said:
... I think it's scary that not even my neurologist mentioned this diet.
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The science on diets is still in it's infancy. Dr. Kessler seems to be the only doc out there studying diets and he's focused on the MAD & LGIT from what I can tell. Paolo Mainardi may have discovered the true therapeutic mechanism for those diets, but it's unclear if the GARD/GFCF is in the same category or not (with respect to the therapeutic mechanism).

KelVarQ said:
... Thanks to you all and of course Bernard for starting this site!
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:)
 
I have cut down on my processed foods in a major way, and would like to buy all organic, but a little pricey. I want to cut out all the gluten retaining foods. I keep a list in my purse, so as to go over it so I may be familiarized with the diet. Although my seizure activity is non existent at the moment, I have digestive problems that I can benefit from doing the diet. Some of the major grocery stores now have gluten free sections, and some are scattered throughout the store. :ponder:
 
Gigi - it would be my recommendation to go gluten free first before trying to be completely organic. However it is my opinion that you can not just substitute non-gluten grains for the grains that you were eating. If your diet consists of highly refined carbs, bread products etc, you need to move away from these and begin adding more veggies to the mix.

Going gluten free definitely does improve many symptoms. Some might not even be aware until they have been gluten free for a period of time, then they return to it and WHAM they are hit by the symptom.

Organic can be pricey, but if you have the ability to shop local, at a farmers market or something similar you will be doing yourself a favor. The meat can be pricey, but if it is extended with vegetables then you most likely won't need as much as you once thought you did. One whole organic chicken can feed you for a week, if you are creative.

I have been seeing some of the great products in the grocery stores too. I tend to shop the outside of our Whole Foods market, and not be hypnotized by the creative packaging. I work hard to remember what was eaten 200 yrs ago, and do my shopping accordingly.
 
I agree with Robin about how far one can extend organic meat creatively! I buy a whole organic free range chicken, cook it in my crockpot with an onion, a couple carrots and a couple stalks of celery. Then I separate all the meat from the bones and skin, divide and chop it up (it makes about 5 cups). I strain the broth and let it cool overnight in the frig. In the morning you can skim the fat right off and I have enough broth (MSG free no less!) and meat to make several meals.
 
Not so sure about chicken?

I see you discussing chicken and I'm not so sure about chicken being Gluten Free? Two times I've had chicken since being Gluten Free and both times I didn't feel well in the head from it. The 1st time I had it with Gluten Free pasta and assuming chicken was gluten free I thought perhaps the gluten free pasta was labeled incorrectly. Then I had chicken by itself and BANG I didn't feel well in the head and instantly knew it was the chicken. I bought all natural chicken too and now I'll no longer touch it. From what I understand chicken can be one of those hit or misses in regards to Gluten. If anyone has any information I would be delighted to hear it, but in the meantime I would recommend being careful with chicken. Also, after watching the documentary Food Inc. I'm not at all shocked about chicken causing me problems since it's shocking to see what's really going on in these chicken coops. Just be careful with chicken. I also told my primary today about my head feeling wacky immediatly after eating Gluten and he wasn't at all shocked and said that's obvioulsy where it's going and it's no wonder why you're now gaining some seizure control. I feel the same way when I eat chicken like I do anything else with Gluten. To me, it's literally a NO BRAINER! Get it...HAHA
 
I got it! haha
Good suggestions regarding chicken. I know DogtorJ has had difficulty as well.
We have messed up our food chain that is for sure.
 
Thank you

RobinN:

Hey thanks for your input, I always appreciate it! I have incorporated more fruits and veggies into my diet, and eat very little bread if any. I am big on meats, and do bite the bullet on the expense of organic, sometimes. I stay away from packaged food as much as possible, going out to eat is when i fall off the wagon. Since I lost my job in May, that has slowed to a crawl. I have not had an aura since then, and that is what I attribute to eating out less. I worked in the city where going out to lunch was a favorite past time. Thanks again for your diligence. :scholar:
 
I put this info in the GARD group. It applies here as we all search for the best foods to eat.

This food list comes from Gottschal who formulated the SCD(Specific Carbohydrate Diet)for people who need to watch gluten, dairy, corn, sweetners. It is also a diet used for autistic children. Dogtor J talks extensively about the link between autism and seizures over on his website www.dogtorj.com.

I printed the list off and used it extensively as I grew used to being on the GARD. There is an "allowed" list and a list of foods "not allowed." I have asked and the lists can be used on the GARD.

http://pecanbread.com/p/legal_illegal_a-c.htm
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to

Molly97:

Thanks for the web site, I have book marked the list of legal and illegal foods, thanks a bunch. :bigsmile:
 
From Dr Mercola's Daily Tip on Facebook:

DAILYTIP: Know where your FOOD comes from and how it’s produced. This may sound like an impossible task if you depend on processed and commercially farmed foods. However, if you purchase your raw dairy, grass-fed meats and free-range eggs from LOCAL FARMERS that adhere to organic farming practices, you can eliminate most of these worries.
 
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