Gluten and seizures?!?!

[rebeccak]

Gluten and seizures?!?!

Hi Everyone!

I'm new to the site, but have read so much of everyone's info. My main concern is gluten and seizures. Last year early Feb. I had a seizure for the 1st time in my life. I had chewed up my tongue badly, had horrible stiffness and pain in my quads, and lost control of my bladder. I was taken to the hospital; my CT scan, blood work, Echo and EEG had all come back perfectly normal. The specialist i saw a few weeks later just chalked it up to my ridiculously busy day and that i hadn't eaten in close to 11 hours due to my hectic day (I eat every 3 hours, lots of small meals, i am very regimented like that... i tend to feel faint if I dont. My blood sugar levels are always perfect so we know I am not diabetic and otherwise have a healthy lifestyle). Therefore an isolated incident.

Just a few weeks ago I had another seizure, it was on January 5th 2010. Although i almost recognized I was going to have a seizure because of that same 'aura' effect you have. I was at work getting some copies form the copier and I felt it come on. I tried to take deep breaths and talk myself out of it, but it wasn't helping.. I quickly walked back to my desk and sat down, just after that my co-workers found me having a seizure. This time at least I didn't chew up my tongue, have bad muscle pain in my quads or loose control of my bladder.

So again, why am I having a seizure?! I ate properly this time, so we know that wasn't the cause.

The only thing that has caused me trouble has been my intolerance to Gluten. I have been gluten free for about 5 years... occasionally i cheat and double up on digestive enzymes and hope it helps. Although, just being close to after Christmas on both occasions, I had over indulged in beer, cookies, cakes, treats and lots of yummy goods I don't typically eat. In fact, last year from about September till December was a really rough time for me and my family, so I kind of 'ate' my feelings and really over indulged in glutenous products. Are my seizures a reaction to over indulging in gluten? Has anyone else had seizures like this?

Please help!

 

[RobinN]

I would say that it is a good indication. One would never know until you are gluten free once again and seizure free again. You might need to push it further and eliminate casein, soy, and corn. Dogtorj says that their proteins are all similar. If you are really sensitive, then you need to make sure you are not around these ingredients.

Frustrating I know.

 

[rebeccak]

Thanks Robin!

After the 2nd seizure happened, my mom was saying to me that its extremely bizarre and what could be the cause. She was had this inkling that gluten might be the cause. So 2 Saturday's ago I Googgled 'gluten intolerance and seizures', that's how I came across this site. Looks like like mom was right! Since 2 weeks ago I have been entirely gluten free and wheat free. I raided the fridge and threw out any sauces that have wheat/flour in them. I have had a few handfuls of Doritos, not much corn, and no soy at all; except, what is soy lecithin'? I find that as a common ingredient in foods. I read all labels carefully before I eat now. Also, do you know if 'barley malt' is ok? Its one of the ingredients in one of my favorite seed & nut bars, its all natural.

 

[RobinN]

Please trust your mom's "inkling". Mother's intuition is really strong, when used in a positive manner.

I would also stay away from processed foods like Doritos. There is so much MSG, which is a neurotoxin. Even the favorite seed and nut bar probably has some in it too. When we began watching ingredients soy lecithin was also something we stayed away from. I had read www.dogtorj.com and learned quite a bit. I decided to go for it and eliminated the four that he suggests.

From time to time I give in and allow a favorite, however I learned my lesson on Thursday. We ate at a local Chinese restaurant. Both Rebecca and I have been feeling terrible, and she unfortunately had a seizure from it. I still don't feel well. It is my belief that it was the MSG. There were not the symptoms of normal food poisoning.

I have a belief, and it might be what you are experiencing... when you clear your system of an offending substance and then revisit it at a later time, you have a more powerful response to it. I know it happens with alcohol, so it must be true with other chemicals too.

Some of our favorites, I just could not duplicate with gluten free products. I had to find new and exciting substitutions. Gluten is in barley.

 

[Bernard]

Hi Rebecca, welcome to the forum. :hello:

There are a lot of people who experience bad reactions to gluten. There could be other factors at play too though. Are you getting another round of testing done?

 

[BuckeyeFan]

:cheers:

Welcome Rebecca. You have already found our expert on diets. Robin can find you links to just about anything diet related, so not much more I can add there.

Hopefully, this is a dietary issue and you can get it under control that way. If the seizures do persist, make sure you follow up with a good neurologist. There is always the possibility of another physical issue causing the problem. Either way, a good diet is not going to hurt.

So come on in and have a seat. I will go get a cup of my famous (gluten free, I think) coffee.

:cheers:

 

[celesteam]

Feeling your pain...

I can totally relate. My first seizure wave lasted 2 1/2 hours even after they got me to the ER. So they saw them and struggled to stop them there and were just going to life-flight me to a trauma center when they stopped. It took weeks for a neurologist to follow up and then... normal EEGs. However, the seizures continue.

Bottom line to me? We are all different. An EEG is just a snapshot. I am SO grateful you came here. It sure has been hugely helpful for me. There are so many people on this site that have a great deal of knowledge.

I'm new to all of this but have found that modified diet is HUGELY helpful. I had even had gluten sensitivity tested at my dr's office and it came back "Normal" but when I started sticking to a gluten free, additive free, processed food free diet... it has helped a ton. So something in that mix must have been triggering seizures.

Also, for me it has helped to take Magnesium. And get plenty of rest (something I failed miserably at in the past). For me, I find that it is like the game Tetris... the triggers add up, but as I try to eliminate some and minimize some, they don't stack up to my "seizure threshold" as often. Good luck finding your triggers... and may you turn out to be a "Tetris Master" and be terrific at eliminating them. Welcome!