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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Seizures And Celiac? I Need To Get Some Thoughts
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18 posts in this topic

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.   

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

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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.

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

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It sounds exactly like it

 

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

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

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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.

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

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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.

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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.  

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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.

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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.   

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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.

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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.

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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.  

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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.

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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.....

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