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 Community Regular
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 Community Regular
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 Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

      @Charlie1946, Sorry I sidetracked your thread a bit. Apologies. Proton pump inhibitors, like Omeprazole, change the pH in our gastrointestinal systems which allows opportunistic microbes to move in and take over. Have you been checked for SIBO? There's a significant link between length of Omeprazole use and SIBO. I had SIBO, thrush (Candida...
    2. Lkg5
      - Lkg5 replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    3. Lkg5
      - Lkg5 commented on Scott Adams's article in Diagnosis, Testing & Treatment
      1

      Rapid Diagnosis of Celiac Disease Using Blood-Based Infrared Spectroscopy and Deep Learning

      Wow!!! 😂
    4. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      45

      Severe severe mouth pain

      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor. I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle
    5. Aretaeus Cappadocia
      - Aretaeus Cappadocia posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods re...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,097
    • Most Online (within 30 mins)
      7,748
    Hana B
    Newest Member
    Hana B
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Severe severe mouth pain

      By knitty kitty · Posted

      @Charlie1946,  Sorry I sidetracked your thread a bit.  Apologies. Proton pump inhibitors, like Omeprazole, change the pH in our gastrointestinal systems which allows opportunistic microbes to move in and take over.  Have you been checked for SIBO?  There's a significant link between length of Omeprazole use and SIBO.  I had SIBO, thrush (Candida) and lichen planus and other problems while I was on Omeprazole.  I had to stop taking it.  It was a horrible time, so I understand how painful and frustrating it is.   You change your microbiome (the bacteria and microbes living inside you) by changing what you eat.  They eat what you eat.  Change the menu and you get different customers.   I changed my diet.  I cut out dairy because I was reacting to the casein and lactose.  I cut out all processed foods and most carbohydrates. I ate meat and veggies mostly, some fruit like apples and mandarin oranges.  By cutting out all the excess carbohydrates, lactose, and empty carbs in processed gluten-free foods, the opportunistic microbes get starved out.  SIBO bacteria send chemical messages to our brains demanding more carbs, so be prepared for carb cravings, but don't let the microbiome control you!   The skin and digestive system is continuous.  The health of our outside skin reflects the health of our gastrointestinal system.  Essential B vitamins, like Thiamine B 1 and especially Niacin B 3, are needed to repair intestinal damage and keep bad bacteria in check.  Niacin helps improve not only the intestinal tract, but also the skin.  Sebaceous Hyperplasia is linked to being low in Niacin B 3.  Lichen Planus is treated with Niacinamide, a form of Niacin B 3.   Vitamins are chemical compounds that our bodies cannot make.  We must get them from our food.  If our food isn't digested well (low stomach acid from Omeprazole causes poor digestion), then vitamins aren't released well.  Plus there's a layer of SIBO bacteria absorbing our vitamins first between the food we've eaten and our inflamed and damaged villi that may have difficulty absorbing the vitamins.  So, taking vitamin supplements is a way to boost absorption of essential nutrients that will allow the body to fight off the microbes, repair and heal.   Doctors are taught in medical learning institutions funded by pharmaceutical companies.  The importance of nutrition is downplayed and called old fashioned.  Doctors are taught we have plenty to eat, so no one gets nutritional deficiency diseases anymore.  But we do, as people with Celiac disease, with impaired absorption.  Nutritional needs need to be addressed first with us.  Vitamins cannot be patented because they are natural substances.  But pharmaceutical drugs can be.  There's more money to be made selling pharmaceutical drugs than vitamins.   Makes me wonder how much illness could be prevented if people were screened for Celiac disease much earlier in life, instead of after they've been ill and medicated for years.   Talk to your doctor and dietician about supplementing essential vitamins and minerals.   Interesting Reading: The Duration of Proton Pump Inhibitor Therapy and the Risk of Small Intestinal Bacterial Overgrowth: A Systematic Review and Meta-Analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC12250812/#:~:text=The long-term use of,overgrowth dynamics is less clear. Lichenoid drug eruption with proton pump inhibitors https://pmc.ncbi.nlm.nih.gov/articles/PMC27275/ Nicotinamide: A Multifaceted Molecule in Skin Health and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC11857428/
    • Lkg5
      Severe severe mouth pain

      By Lkg5 · Posted

      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor.  I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle 
    • Aretaeus Cappadocia
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Aretaeus Cappadocia · Posted

      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods regarding their product "Organic Brown Rice Vinegar" (product of Japan) to ask how their product is made. They gave me a clear answer that they >do< use rice and they >do not< use wheat or barley in preparing their koji. FWIW, the product itself does not contain any labeling about gluten, gluten risk, or gluten safety. Based on Eden's statement, I am going to trust that this product is gluten safe and use it.
    • Scott Adams
      heaps of hope!

      By Scott Adams · Posted

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
×
×
  • 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.