Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Seizures And Celiac? I Need To Get Some Thoughts


Fire Fairy

Recommended Posts

Fire Fairy Enthusiast

When I was an infant the Doctor told my parents I was a "seizure baby" and I probably won't live more than a couple years. When I was still a small child they decided it was inner ear trouble and put tubes in my ears. I honestly can't tell you how old I was when those seizures stopped but I do know I had gotten to the point I could tell when one was coming and they didn't scare me anymore. I was old enough to be in Sunday school I know this because the Sunday school teacher didn't think my seizures were real she thought they were an act to get attention. There was an ugly incident where this teacher drug me out of her class room while I was seizuring, yelling at me the whole time that I was a spoiled little brat etc (Which might be why I never expect an authority figure to believe a word I say).

 

The seizures of this type ended about on par for it to have been inner ear trouble. However when I hit puberty I started fainting on occasions this continued into my early 20's. Then it just stopped. In my late 20's I noticed I occasionally had eye twitching not often but I was scared by it. In reading about Celiacs and Seizures I read something about a really mild seizure looking like eye twitching?

 

Then there is the thing that started in 2003. I started losing a tiny bit of time. I'd be standing at work or in the grocery store and no one would be near me then suddenly several people would be there. It was really scary. Like something out of sci-fi. Then I think it was 2008 when I started having moments when I just dropped to the ground and afterward I was horribly dizzy and my reflexes were shot. And about the same time period I also had three episodes where it was like all the data in my brain just went offline for a flash then it popped back in. The first thing I got back was the concept solid if that tells you how much my brain was freaked out.

 

Do these events sound like seizures?  I haven't had any of these things happen since going gluten-free in November 2010. I had actually feared the last one I described might have been a mini stroke but now I'm wondering if it was a seizure instead.   


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

Yes.

 

Open Original Shared Link

 

I knew a girl in high school who had these.

psawyer Proficient

One of the symptoms by which celiac disease can manifest itself is seizures. This is more common in children than adults.

Fire Fairy Enthusiast

Thank you both! Those Petite mal seizures are scary. This is very important for me to know as I had previously thought the seizures had ended in childhood. I was not aware those other events could be seizures.

Nikki2777 Community Regular

yes - I was just reading about those 'absence seizures' - sounds like what's happening when you 'lose time'.

Fire Fairy Enthusiast

It sounds exactly like it

 

yes - I was just reading about those 'absence seizures' - sounds like what's happening when you 'lose time'.

Fire Fairy Enthusiast

So does this mean I mat have developed Celiac Disease in childhood?   


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Kamma Explorer

Hello Fire Fairy,

 

I had clonic seizures (jerking in rhymic motions - my torso and head would whip back and forth, round and round) that lapsed upon going gluten free but return as a symptom of inadvertent glutening.  I did not have calcification on the brain which would denote epilepsy.  Your 'spaced out' times definitely sound like absence seizures as has been mentioned.

Fire Fairy Enthusiast

Thank you Kamma. I had an MRI in 2008 and there was no calcification on my brain then.   

Jestgar Rising Star

FF, they may not be related, or it may be that the stress of being glutened sets off a seizure and any stress would do the same.

Kamma Explorer

Thank you Kamma. I had an MRI in 2008 and there was no calcification on my brain then.   

 

Thank Heavens for that.  I know I was quite relieved to find out that the seizures were not caused by epilepsy.  

 

Researcher's don't quite know why gluten can cause non-epileptic seizures but it's documented throughout out the research on the neurological presentations of gluten intolerance/sensitivity.  

dilettantesteph Collaborator

I have a friend who has these losses of time from strokes, or at least that is what his doctors say.  It has happened in my presence a few times.  It has lasted 5 minutes or so.  It looks like he is day dreaming or something.  He stays seated and doesn't fall off the chair or anything, but isn't aware, and doesn't respond.  When he "comes to", he doesn't know what has happened, and then he gets really upset because of his decline in health.  Last time he was holding a bottle of water and slowly poured the whole thing on the floor.

Fire Fairy Enthusiast

I work in a Home Depot and a lot of days I'm in the Garden Center. The last few times that I'm aware it happened I was in the Garden Center and no one else was around, then suddenly there were multiple customers milling around! I was just standing there and the world around me changed.  I was scared by what happen and afraid of getting fired for it. Not greeting people is a firing offence. I honestly was so sick from the Migraines I had that very hot Summer that I really thought I was going to die out in that Garden. Several times I just wanted to lie down on the concrete floor and let them find me. It was that following November when my DR figured out I had Celiac disease.   

dilettantesteph Collaborator

I am sorry that your have to deal with this.  Some thoughts.  You said that this hasn't happened to you since you went gluten free.  I hope that don't come back.  If there is a connection, then if you get accidentally glutened you need to be careful.  My friend who has these seizures is not allowed to drive.  It would be very dangerous to get one of these when driving.  He was also once hit by a car while crossing the street.  He probably had one of the seizures when this happened.  If you get a bad glutening and you think that it might happen again, you should take some precautions.

Nikki2777 Community Regular

They have service dogs that can sense when you're about to have a seizure - at least a grand mal, I think.  I met a woman once who had a dog with her and she was allowed to drive with him in the car (back roads) - he would alert her and she'd pull over.

Kamma Explorer

Sounds like you really suffered a lot that summer, Fire Fairy.  Sorry to hear that.  I agree with Steph - be very careful with CC so you don't get inadvertently glutened. Your safety is at stake as Steph's friend's experience demonstrates.

 

If you haven't had one since going gluten free, I would say that there is a chance of a link between the two.  

 

_____________

 

Nikki, you just gotta love dogs.  :) They give so much back to humans.  

Fire Fairy Enthusiast

I am sorry that your have to deal with this.  Some thoughts.  You said that this hasn't happened to you since you went gluten free.  I hope that don't come back.  If there is a connection, then if you get accidentally glutened you need to be careful.  My friend who has these seizures is not allowed to drive.  It would be very dangerous to get one of these when driving.  He was also once hit by a car while crossing the street.  He probably had one of the seizures when this happened.  If you get a bad glutening and you think that it might happen again, you should take some precautions.

You know what is interesting. When I was 5 I was with my mom picking my older brother up at High School and a young woman ran her car into a tree. She opened the car door and everyone was laughing at her...she fell out dead her neck was broken. As a result I was terrified of driving and refused to learn in High School I just knew I'd die behind the wheel. I got my license at age 29, I drove a few times but got very scared by the "brain fog", my poor reflexes and my poor night vision so I stopped. My friends, family and sweetheart all want me to drive but none of them know I was still having seizures so recently. :( Actually my Dad knows and he doesn't push me to drive at all.  I feel ditzy not knowing those events were petite mal seizures I was filing them under brain fog.

Jestgar Rising Star

If you hadn't had a history of seizures it's pretty likely that they would have been forever labeled 'brain fog' by everyone.  It's a pretty weird event, after all -- you just 'disappear' for a few seconds.....

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jmartes71 replied to chrish42's topic in Doctors
      7

      Doctors and Celiac.com

    2. - Wheatwacked replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Have Tru Joy Sweets Choco Chews been discontinued??

    3. - Theresa2407 replied to chrish42's topic in Doctors
      7

      Doctors and Celiac.com

    4. - Scott Adams replied to MauraBue's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Have Tru Joy Sweets Choco Chews been discontinued??

    5. - Scott Adams replied to chrish42's topic in Doctors
      7

      Doctors and Celiac.com

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,263
    • Most Online (within 30 mins)
      7,748

    Fruitypebbles
    Newest Member
    Fruitypebbles
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jmartes71
      I appreciate you validating me because medical is an issue and it's not ok at all they they do this. Some days I just want to call the news media and just call out these doctors especially when they are supposed to be specialist Downplaying when gluten-free when they should know gluten-free is false negative. Now dealing with other issues and still crickets for disability because I show no signs of celiac BECAUSE IM GLUTENFREE! Actively dealing with sibo and skin issues.Depression is the key because thats all they know, im depressed because medical has caused it because of my celiac and related issues. I should have never ever been employed as a bus driver.After 3 years still healing and ZERO income desperately trying to get better but no careteam for celiac other than stay away frim wheat! Now im having care because my head is affected either ms or meningioma in go in tomorrow again for more scans.I know im slowly dying and im looking like a disability chaser
    • Wheatwacked
      M&M Peanuts. About the same calories and sugar while M&M Peanuts have fiber, potassium, iron and protein that Tootsie Rolls ("We are currently producing more than 50 million Tootsie Rolls each day.") don't. Click the links to compare nutritional values.  Both are made with sugar, not high fructose corn syrup.  I use them as a gluten free substitute for a peanut butter sandwich.  Try her on grass fed, pasture fed milk. While I get heartburn at night from commercial dairy milk, I do not from 'grassmilk'.     
    • Theresa2407
      I see it everyday on my feeds.  They go out and buy gluten-free processed products and wonder why they can't heal their guts.  I don't think they take it as a serious immune disease. They pick up things off the internet which is so far out in left field.  Some days I would just like to scream.  So much better when we had support groups and being able to teach them properly. I just had an EMA blood test because I haven't had one since my Doctor moved away.  Got test results today, doctor ordered a D3 vitamin test.  Now you know what  type of doctors we have.  Now I will have to pay for this test because she just tested my D3 end of December, and still have no idea about my EMA.    
    • Scott Adams
      Some of the Cocomels are gluten and dairy-free: https://cocomels.com/collections/shop-page
    • Scott Adams
      Thank you for the kind words! I keep thinking that things in the medical community are improving, but a shocking number of people still post here who have already discovered gluten is their issue, and their doctors ordered a blood test and/or endoscopy for celiac disease, yet never mentioned that the protocol for such screening requires them to be eating gluten daily for weeks beforehand. Many have already gone gluten-free during their pre-screening period, thus their test results end up false negative, leaving them confused and sometimes untreated. It is sad that so few doctors attended your workshops, but it doesn't surprise me. It seems like the protocols for any type of screening should just pop up on their computer screens whenever any type of medical test is ordered, not just for celiac disease--such basic technological solutions could actually educate those in the medical community over time.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.