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
Fire Fairy
Posted

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
Jestgar
Posted

Yes.

 

Open Original Shared Link

 

I knew a girl in high school who had these.

psawyer Proficient
psawyer
Posted

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

Fire Fairy Enthusiast
Fire Fairy
Posted
  • Author

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 Rising Star
Nikki2777
Posted

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

Fire Fairy Enthusiast
Fire Fairy
Posted
  • Author

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
Fire Fairy
Posted
  • Author

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
Kamma
Posted

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
Fire Fairy
Posted
  • Author

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

Jestgar Rising Star
Jestgar
Posted

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
Kamma
Posted

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
dilettantesteph
Posted

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
Fire Fairy
Posted
  • Author

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
dilettantesteph
Posted

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 Rising Star
Nikki2777
Posted

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
Kamma
Posted

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
Fire Fairy
Posted
  • Author

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
Jestgar
Posted

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.

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Reverse Osmosis (RO) Water

      I've heard RO water is bad, too. Distilled water has all the minerals distilled out of it, so it will pull minerals out of your bones, too. I only use distilled water to fill up my clothes iron so it won't get mineral deposits inside and quit working. I drink mineral or spring water.
    2. Yaya
      - Yaya replied to Yaya's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Great Value Veggies cannot be trusted.

      Scott. Thank you for your reply. I'm still having symptoms, but significantly better. I will go back to batch cooking and freezing vegetables. I have had success with Pict Sweet frozen, single item (not mixed) vegetables. My Kroger carries very little Pict Sweet variety. Regards, Yaya
    3. Known1
      - Known1 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Reverse Osmosis (RO) Water

      I am hesitant to post this as I have seen many people here recommending RO water. With that said, I want to share my experience and how RO water now impacts me. Three or four years ago a local store installed a RO water refill station. I had been buying gallons of distilled and spring water prior to that. I switched over to using the RO water refill station...
    4. Known1
      - Known1 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

      My neighbor's mom was diagnosed with celiac disease 16 years ago. She is a very kind person and has shared some info about local grocery stores and daily (soon to expire) meat deals. This evening she brought over 2 slices of Papa Murphy's gluten-free pizza. It looks to be topped with chicken and spinach. I asked, "aren't you concerned with cross contamination...
    5. Scott Adams
      - Scott Adams replied to Yaya's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Great Value Veggies cannot be trusted.

      That must have been really upsetting to discover, especially after relying on a product you believed was safe. Labeling can change at any time due to supplier shifts or shared equipment, so it’s always important to double-check packaging—even on products we’ve trusted for years. A “may contain wheat” statement usually indicates potential cross-contact risk rath...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,442
    • Most Online (within 30 mins)
      7,748
    Peggy Vorell
    Newest Member
    Peggy Vorell
    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

    • knitty kitty
      Reverse Osmosis (RO) Water

      By knitty kitty · Posted

      I've heard RO water is bad, too.   Distilled water has all the minerals distilled out of it, so it will pull minerals out of your bones, too.  I only use distilled water to fill up my clothes iron so it won't get mineral deposits inside and quit working. I drink mineral or spring water.  
    • Yaya
      Great Value Veggies cannot be trusted.

      By Yaya · Posted

      Scott.  Thank you for your reply. I'm still having symptoms, but significantly better.  I will go back to batch cooking and freezing vegetables.  I have had success with Pict Sweet frozen, single item (not mixed) vegetables.  My Kroger carries very little Pict Sweet variety. Regards, Yaya
    • Known1
      Reverse Osmosis (RO) Water

      By Known1 · Posted

      I am hesitant to post this as I have seen many people here recommending RO water.  With that said, I want to share my experience and how RO water now impacts me.  Three or four years ago a local store installed a RO water refill station.  I had been buying gallons of distilled and spring water prior to that.  I switched over to using the RO water refill station saving money by brining in my own clean empty gallon jugs.  Every 6-months I would replace the jugs by buying new gallons of distilled water.  This RO water is the only water I would drink while at home.  Two huge glasses every morning before work and two more after work.  I would also use the RO water to make coffee and hot coco. This past December, prior to my celiac diagnosis, my gut was making more noise than anything I had ever experienced.  Seriously, it was crazy, almost like fire works going off in my stomach.  I happened to pick up some distilled water for my 6-month jug rotation.  Literally, as soon as I started drinking the distilled water my stomach settled a great deal.  I could honestly feel the difference after the first glass of water.  I thought that maybe the RO water from the store's refill station was contaminated with some sort of cleaning agent.  I swore to myself I would never drink from that RO refill station again.  Instead I went back to buying distilled along with gallon jugs of spring water.  No issues with either of those as far as an upset stomach is concerned.  Cost, well that's a different story all together. After being diagnosed marsh 3c, I went shopping at Aldi's for the first time in my life.  I noticed they also sell water by the gallon.  Over the course of the last few weeks, I have purchased a total of 6-gallons of their water.  (Thankfully they were out on two of my visits.)  After having my stomach starting to make noises similar to mid-December again, it dawned on me, maybe its the Aldi water?  Initially I had contributed my bubble gut to some sort of gluten exposure or cross contamination.  Even though everything I have put into my stomach is naturally gluten-free or has been labeled gluten-free / certified gluten-free.  I had assumed that the Aldi water was spring water.  Come to find out, that was a bad assumption.  Looking close at the label it says purified by RO or distillation (or something like that). Again, I switched to different water.  Just like last December, the non-RO water instantly calmed my stomach and even felt better going down the hatch.  This was earlier today by the way.  Prior to creating this post, I did a few searches via Uncle Google.  I bumped into a thread on Reddit (where I am not a member) that has multiple people complaining of GI issues related to RO water.  So my initial thoughts on a cleaning agent in the refill station RO water were likely not correct.  Unfortunately, it seems the RO water itself causing me problems.  I am not sure if we are allowed to post links to other sites and hopefully I will not get into trouble for doing so.  I did try printing the Reddit thread to a PDF file.  Unfortunately, the file is 2MB in size, which is well over the 500KB file attachment limit here on this amazing forum.  Again, hopefully this is ok.  🤞  Here is the Reddit thread. This may not be a popular opinion here, but personally, I will not willingly drink another glass of RO water for the remainder of my life.  Who knows, maybe drinking RO water for the past several years is part of what activated my celiac?  No proof, but just a thought.  Come to find out RO water is well known to leech minerals from your body.  With people like us often lacking minerals to begin with, RO water does not seem like a wise choice.  As the Reddit thread mentions, there are RO water filtration systems that will inject minerals back into the water.  However, those systems are likely not being used at the grocery store refill stations nor by the bottling companies producing RO water for sale at your local store. Please do not shoot the messenger as I am just sharing my personal experience and letting others know that most RO water will leech minerals from your body. God bless and stay well, Known1
    • Known1
      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

      By Known1 · Posted

      My neighbor's mom was diagnosed with celiac disease 16 years ago.  She is a very kind person and has shared some info about local grocery stores and daily (soon to expire) meat deals.  This evening she brought over 2 slices of Papa Murphy's gluten-free pizza.  It looks to be topped with chicken and spinach.  I asked, "aren't you concerned with cross contamination"?  She said no and apparently eats it on a somewhat regular basis. I found an old article here along with another thread pertaining to Papa Murphy's gluten-free pizza.  The article is quite old, so I do not think it holds much weight nowadays.  The thread I found was also a bit dated, but certainly more recent and relevant.  The information in the thread I found was a bit inconclusive.  Some said they trust Papa Murphy's gluten-free pizza and others were a big no way.  One person even took time to train their local franchise on how to ensure the pizza remains gluten-free without cross contamination. Anyway, being recently diagnosed as marsh 3c, I am currently working on week 3 or 4 in my new gluten-free journey.  I do not want to be rude and toss the pizza out, but I also do not want to have a reaction.  Since she has celiac and obviously ate much or at least some of the pizza, I am leaning towards eating the two slices for lunch tomorrow.  As this thread's title states, what would you do?  Would you eat it or toss it out?  I suppose I could also just give it back to my neighbor to polish off. I look forward to reading your thoughts. Thanks, Known1
    • Scott Adams
      Great Value Veggies cannot be trusted.

      By Scott Adams · Posted

      That must have been really upsetting to discover, especially after relying on a product you believed was safe. Labeling can change at any time due to supplier shifts or shared equipment, so it’s always important to double-check packaging—even on products we’ve trusted for years. A “may contain wheat” statement usually indicates potential cross-contact risk rather than an added ingredient, but for people with celiac disease that risk can still be significant. If you’ve been having symptoms, it may take days to weeks to fully settle, depending on the level and duration of exposure. In the meantime, switching to fresh produce or brands that clearly state gluten-free status is a reasonable step. It may also help to contact the manufacturer directly to ask when the labeling changed and what their current cross-contact controls are.
×
×
  • 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.