Hello, New Here

[RacerX35]

Hi all,

My name is Ray and I thought I'd check this site out. Now I'm not a celiac, but was diagnosed as being gluten sensitive, I am also epileptic. While talking to friends on epilepsyfoundation.org, it was suggested by someone (who is now somewhat of a friend) to check into gluten sensitivity. As I studied, this is linked to the diagnosis I received from one of my neurologists. I was diagnosed with Hypocampal Sclerosis, which is a degeneration of my hypocampus. We couldn't figure out why I was still having problems even after going through brain surgery. After it was suggested and I studied into to it and got tested, I was diagnosed as being gluten sensitive and then found out that it could've been a cause of my epilepsy. Now I don't have the sensetivity as many I read about in posts and I don't get sick from eating gluten products. To a degree, I sometimes feel it's can be a bit worse, but I am not trying to offend anyone of your sensitivities, nothing but respect for all dealing with this. Like I said, I don't get sick, but I will have siezures upon eating glluten products. It even seems as though I have become more senstive since going gluten free. I stole a pepperoni off one of my kids pizza slices one night and then went through having minor siezures for the better part of the following day. I've been relieved that so many restaurants have added gluten free menus to their products now. The main risk I have in the possibility of eating gluten products now is that I have a 35 mile trip to get to work up a winding mountain road. That could be very dangerous if I have a siezure on the road. Plus I can't afford to lose my driving priviledge either. Any way, I saw this web site and thought I'd have people with positive thoughts to share and find more help in this world that I have taken up for just about a year now.

Thanks,

Ray

[txplowgirl]

Hi Ray, welcome to the forums.

I personally don't have a problem with seizures but I have a cousin who has them. She is 55 years old and she has had seizures since 10 years old. She has had at least 1 to 3 a day. I talked her into gluten free a year ago and it took a good 7 months before she felt any relief. But she hasn't had a seizure for 4 months and her Lupus also went into remission for the first time ever. She has to be completely gluten free, no gluten free processed foods, no eating out, eating only whole foods. She has never felt this good.

I hope being gluten free can help you.

[Lilith]

Hi, Ray,

I'm another one who is gluten-free but not a celiac - I went gluten-free for an autoimmune disease (IGA Nephropathy, kidney disease). I have no physical symptoms when I eat gluten but from some research I have done, it seems possible that my kidneys do react to gluten. I will have some test results next week to see if this has made a difference in my kidneys.

Interestingly, I have also had seizures in my past. Never thought they too might be connected somehow to gluten so your post as very interesting to me.

Having had a few seizures, I can totally understand you wanting to eliminate them if possible. They are not pleasant, to say the least. I wish you a lot of luck with your gluten-free diet and hope you experience the results you are looking for.

Lilith

[kwylee]

Welcome! You're in the right place!

I too am classified as non celiac gluten intolerant, and my symptoms are almost all neurological. I don't have seizures but prior to removing gluten from my diet, I sometimes I felt like I could just "blink out of existence", just lose consciousness. It took a few months before that subsided completely.

I also experience the VERY same symptoms from ingesting casein and soy as I did with gluten; as I understand it, their chemical makeup is similar. But a year into this, I don't miss any of it because I'm so much better.

[RacerX35]

Thank you, The funny thing is that while growing up and possibly like others. Wheat was the healthy food to eat. With hypocampal Sclerosis, this builds up over time (like a ticking time bomb I guess)and culminates with siezures (epilepsy). The median age associated with it is in the mid early to mid thirties. I was diagnosed with epilepsy when I was 32-33. I was on three different meds and still having 5-8 siezures a day. The craziest thing is that I had crashed my street bike 5 years to the date of my car crash. If I remember correctly, we had stopped at a Starbucks to meet up and ride up Palomar mountain. I had my usual coffee and my usual scone. Things progressed with out knowing what was going on. After being diagnosed, my mother told me that my grand-mother could not eat wheat products. At that time and because of where they lived (indian reservation in southern California) celiac or gluten was not a common thing or probably not even a medical thing to look for. Now I am gluten-free for almost a year now and more in control of things in my life. I have found so much in the gluten-free world, from restaurants to super markets. The local health food stores have ailes of gluten-free products. My favorite breakfast plae (Original Pancake House) started serving gluten free pancakes shortly after I was diagnosed and this made me extremely happy. There is a newer pizza place (Pizza Fusion) that has gluten free crusts and my wife is more than happy to cook gluten-free at home and then go full gluten while I am away on business trips (of which I think is very funny) . Any ways, thanks again for the responses. I can go on to others threads and share my experiences now, even though I've only been in this world of gluten free for a year now.

Later,

Ray

[erinecox]

Wow Ray, bless your heart! I'd rather have all my symptoms put together than yours alone! That being said, it's not unusual at all to become more sensitive as you become gluten free. I know that when I was eating the gluten and cheating it never really bothered me. Now that I've been super strict about it for several months, the tiniest bit makes me so sick. Best of luck!

[RacerX35]

It's not an easy thing. I have a lot of support from famiy and friends. When I go to a family party (it's funny) my cousins always buy those hard cider drinks so that I can have a drink with them instead of beer, plus I have found the gluten free beers available to me. Sometimes I wonder, if we had known about the gluten sensitivity way back when I was a kid,,,,,,,,,,,, would I have developed epilepsy. Like I said, my mother always believed that eating wheat was the healthy choice in our diets, better than white bread and all that. You never know. My mother told me that along with my grand mother not being able to eat wheat, one of my uncles had been epileptic. It's a strange world we live in. Since my siezure would not go away, my neurologist increased my medications and I asked him if I would ever go off my meds, he told me that I would probably be on them the rest of my life. I'd rather do that and be gluten free than have the fear of a bad siezure coming on at the wrong time. That's how I found out about the epilepsy. Had my first known siezure, blacked out and crashed into a tree. Now one of our friends came up with a new slogan for when we are eating with them. They always check to make sure the food is gluten free for me, if it is then it's "Ray okay". I thought that this was hilarious .

Later all,

Ray