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Celiac's And Seizures

Tigertail

By Tigertail
in Related Issues & Disorders

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Tigertail Newbie
Tigertail
Posted

Hi, I am a new member diagnosed as Celiac last Feb. and I have Dermatitis Herpetiformis. I have been gluten-free since than but I have had many other problems pop up. One of these problems is that two weeks ago I had my very first seizure. I am 48 years old. I did read that soy can cause lots of problems and I do eat a lot of that so I'm cutting that out of my diet as of today. I was just wondering if anyone else have had this happen to them? I do have an appointment to see a neurologist but thats not until Dec. I was wondering if it could be connected to Celiac. If any one has any ideas please let me know. Thanks

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ravenwoodglass Mentor
ravenwoodglass
Posted

My seizures were definately linked to celiac and have resolved gluten free. I do still get some mild seizure type reactions when glutened but nothing like I had before. I also developed a pretty severe reaction to soy after being very ill last spring but it didn't seem to cause the seizures to come back. I would definately check things out with your neuro though especially if the seizure was of the gran mal type, sometimes our wiring just goes haywire and some folks have had one seizure and then never had another but it should be checked out.

Tigertail Newbie
Tigertail
Posted
  • Author
My seizures were definately linked to celiac and have resolved gluten free. I do still get some mild seizure type reactions when glutened but nothing like I had before. I also developed a pretty severe reaction to soy after being very ill last spring but it didn't seem to cause the seizures to come back. I would definately check things out with your neuro though especially if the seizure was of the gran mal type, sometimes our wiring just goes haywire and some folks have had one seizure and then never had another but it should be checked out.

Thank you for responding. You have made me feel a lot better just knowing that it could very well be caused by the Celiac. I most definitley will follow up with my neurologist. It was a gran mal type and I am so scared I will have another even though I was put on Dilantin. It's also nice to know about other Celiacs out there as I have felt very depressed and alone.

ravenwoodglass Mentor
ravenwoodglass
Posted
Thank you for responding. You have made me feel a lot better just knowing that it could very well be caused by the Celiac. I most definitley will follow up with my neurologist. It was a gran mal type and I am so scared I will have another even though I was put on Dilantin. It's also nice to know about other Celiacs out there as I have felt very depressed and alone.

Try not to worry too much if it was only one time, the neuro should be able to get a handle on it. I was on seizure meds for a few years but have been off them now for a long time. I know what you mean about feeling depressed and alone. For me the depression has lifted but when I was first diagnosed it was awful when it combined with the gluten withdrawl. But one day it was like a cloud had lifted, it was astounding. This board helps me a lot with the lonliness, I am quite isolated and it helps alot to 'converse' with the folks here.

You are not alone in your issues at all. If you want put celiac or gluten and neurological issues in the search bar. There was a discussion about it a while back with links to info that you may want to print out to show your neuro, some of it is from 'peer reviewed journals' like PubMed and info from the NIH. It is a shame but many doctors in this country are clueless about the neurotoxic effects of gluten on sensitive people.

hlm34 Apprentice
hlm34
Posted

I had my first and only seizure over 2 years ago at age 27. It was a grand mal. I went to one of the best neurologists in the country and they could find no reason for the seizure. 2 months later, i was diagnosed with celiac. My doctor swears that the seizure was not caused by celiac. He claims that if it was caused by celiac there would be some evidence (calcifications?) that show up on the MRIs. I do think its strange that they both occurred so close to each other. But many people who have seizures have them once, for no reason at all, and never have them again. Most likely, i believe i had a seizure, and that traumatic event, triggered the symptoms of celiac to rear its ugly head. I too was on medication for 2 years, and finally was given the green light to wean myself off the meds. The meds had some nasty side effects - the worst was that i was so exhausted all the time. So, I've been fine off the meds and much happier. I hope thats what happens for you too.

As a side note, how are you faring on Dilantin? That was my first med, and i reacted HORRIBLY to it. From what i understand its one of the strongest seizure meds out there and therefore has so many side effects. Tegretol was the same for me. Towards the end i was on Trileptal and it was much better for me. There are literally hundreds of seizure meds out there, you should try as many as you need until you find the one that works for you.

ravenwoodglass Mentor
ravenwoodglass
Posted

"My doctor swears that the seizure was not caused by celiac. He claims that if it was caused by celiac there would be some evidence (calcifications?) that show up on the MRIs."

I don't know if that is true in all cases but it was in mine. What is found is called UBO's. Unidentified Bright Objects they look similar to the damage that comes with MS but not in the same places. Unfortunately my neuro just shrugged his shoulders at the findings and said they were normal. It wasn't till after I had been diagnosed celiac that I did some research and I found out what they really were, celiac related brain damage. I would be really curious to see if some of mine have gotten smaller or disappeared as most of my neuro symptoms have resolved.

zkat Apprentice
zkat
Posted

I had my first seizure at 19. I was on Dilantin for years and I always thought it was terrible (in hind sight the majority of my complaints were from undiagnosed celiac-not the Dilantin). I was switched to Tegretol-didn't have many problems on it, but it always made my stomach cramp. I went Gluten free in Jan. and also weened of my seizure meds. I have not had a seizure since 1999 and I hope it stays that way. Mine were most likely celiac related because I still have problems if I get a major glutening (not Grand Mal, but tremors).

Kat.

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Tigertail Newbie
Tigertail
Posted
  • Author

Thanks everyone for your input.You have all been a great help!

spunky Contributor
spunky
Posted

When you get the chance, look up Dogtor J's website...a vet in Alabama who treats dogs' seizures and other disorders through diet.

He has a huge website, and is himself a celiac, and through awareness of that whole thing has researched quite a bit and found that most dogs with seizures will recuperate if kept gluten free.

He advocates in addition to staying gluten free, also avoiding other foods he calls "glue foods," i.e., foods that are used in the manufacture of glues. He doesn't relate the other "glue foods" besides gluten to seizures, but just believes that in dogs and cats and some other animals he treats, it becomes clearly evident that these other foods can cause a host of health problems...the glue foods, according to "Dogtor J" are gluten grains, dairy protein (casein), soy protein, and corn, although he says corn is the least harmful of those foods and can be eaten without harm by many dogs/cats and he believes also people.

His research, experience, and ideas, as well as his personal story with his own celiac disease, make for very interesting reading...www.dogtorj.net

Tigertail Newbie
Tigertail
Posted
  • Author

Hey Spunky!

Thank you for that info on Dogtorj. I just got done reading some of it and it was quite interesting and I have a lot more to read. I have learned so much since becoming a member and I just thank everyone.

Tigertail (Lacey)

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