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. - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Accuracy of testing concerns

    2. - McKinleyWY posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Accuracy of testing concerns

    3. - trents replied to Teaganwhowantsanexpltion's topic in Introduce Yourself / Share Stuff
      4

      A little about me and my celiac disease

    4. - Peace lily replied to AristotlesCat's topic in Super Sensitive People
      118

      Gluten Free Coffee

    5. - Teaganwhowantsanexpltion replied to Teaganwhowantsanexpltion's topic in Introduce Yourself / Share Stuff
      4

      A little about me and my celiac disease

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

    • Total Members
      133,238
    • Most Online (within 30 mins)
      7,748

    tcpb
    Newest Member
    tcpb
    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

    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
    • Teaganwhowantsanexpltion
      Thank you I will i have been on a strict gluten free diet ever since I got diagnosed but sometimes places lie about there food so there r some things that do get contaminated which causes me to throw up on end for several hours until I can't hold myself up anymore 
×
×
  • 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.