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Seizures And Celiac
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hi i am a teen that has seizures and celiac i was wondering if anyone else has them both. i know that having celiac can cause seizures . so write back :)

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http://www.glutenfreeforum.com/index.php?showtopic=315471 2007, 07:43 PM'

My sister has seizures and shes' not diagnosed yet but I think she had celiac disease too.

Maybe this discussion will help. You can also go to the Example search box above and erase tomato sauce and type in seizures and search for other discussions that way.

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I was but not anymore. I do not seize now unless glutened and even then they are different and not as severe. I should note I did not have full gran mal seizures, I had seizures in the sub illeal cortex which have a different sort of presentation.

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I was diagnosed w/ idiopathic epilepsy 20 yrs ago (in college). Though by history we can document seizures in elementary school. I had mixed type seizures (mostly tempral lobe, but have had "grand mal" seizures too). I was on multiple meds & still had some seizures. When I went low gluten (only the hidden trace sources) I stopped having seizures. I am now totally gluten-free & off all seizure meds. The only seizure I have had since was when I got glutened & it was mild (eye blinking). I am not even having seizures w/ strobe lights or being startled awake. :D I still avoid Nutrasweet as it is unhealthy anyway & I am not willing to risk it. It is nice to be out of the fog that comes w/ celiac disease & seizure meds. :D

Hope this helps. Remember you can't suddenly discontinue seizure meds or it will cause you to go into a seizure that you can't get stopped (life threatening). Even people w/o epilepsy will have seizures if they take seizure meds then suddenly discontinue it. If you think having your celiac disease under control has resolved your seizure disorder, talk to your doctor about trying to wean from it. I hope yours is celiac disease related so you can be seizure free too. Keep me posted as to how you are doing.

God Bless,

Deb

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I have seizures and celiac. They CAN be related, but it my case they are not. I wish the seizures were a result of the celiac though, and then being gluten-free would relieve them. Unfortunately, since they are not, i have to do the gluten-free diet AND take meds for the seizure.

Have you had an EEG done?

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hi i am a teen that has seizures and celiac i was wondering if anyone else has them both. i know that having celiac can cause seizures . so write back :)

I have both celiac and epilepsy also, but they are also unrelated. I was born having seizures, and had a febrile seizure when I was two, but the epilepsy did not begin to develop in earnest until I was a teenager.

I am interested in what type of seizures you have.

Ed

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Yep, epilepsy and celiac...unfortunately, mine are unrelated. However, there is evidence that the two can be related; it just doesn't happen to be so in my case. Keep hope and keep researching.

-Julie B)

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hi i am a teen that has seizures and celiac i was wondering if anyone else has them both. i know that having celiac can cause seizures . so write back :)

My daughter has a new seizure disorder (first seizure at the age of 14). We have not had her tested for celiac and yet I put her on an elimination diet and we are waiting to see results. We have had one month free of seizures, and yet also started natural hormones, so I am not sure which is more helpful. Can say almost with assurance that the anti seizure meds are not helpful.

Thank God for the internet.

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I was diagnosed with idiopathic epilepsy when I was 19 (13 yrs. ago), in hindsight it was one of the first true signs of the celiacs. I have weened myself off my meds (not recommended without a dr) and have been seizure free for 6 months.

Kat.

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I had myoclonus and petite mal seizures and both appear to have been eliminated by going gluten, diary, soy, egg, corn and chemical free. My stomach was killing me so I had to eliminate all of these at once, so I have no idea which one was the culprit. Or if some combination of these caused it.

However, I know I will get myoclonus, insomnia and horrible "D" if I accidently eat gluten again. I haven't had a petite mal seizure in 6 - 9 months ? but those weren't happening every day like the myoclonus.

I have read that dairy, etc can cause symptoms in others though. I haven't tested dairy, etc solely to see if any of those would cause my symptoms to come back.

If you google "gluten epilepsy" or "gluten seizures" you will get plenty of reliable sites on how the two are related.

Marcia

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Hi everyone- This is my first time posting on this board. I have referenced this web site probably a hundred times over the last two weeks-- it's been very helpful. My daughter (now 11) starting having seizures in January 2009. They started as partial seizures, but have now progressed to tonic-clonic seizures where she loses consciousness. They are terrifying for her and us.

She has been to the ER multiple times; we have seen neurologists as well. She has had two EEG's and an MRI. The medical community can provide no answers-- all the tests come back "normal". At any rate, I have been doing a lot of research on my own and have determined to give the gluten free thing a try. She has actually had neurological issues (numbness and tingling in her feet, legs, and now hands) for the last 5 years. In addition, she was thought to be lactose intolerant at one point because of stomach problems, but that turned out not to be the case. Now I wonder if she has been gluten intolerant all along. We are now on day 4 of no gluten. She has adapted very well, and so far, no seizures or numbness/tingling in her limbs.

I would love to hear from others that perhaps have had similar experiences. I will keep you all posted on our progress. I truly hope it is gluten intolerance because that is something we can live with. The other thing her neurologist is looking at is MS-- which is far more discouraging. Thanks!

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Hello, and welcome.

I had a younger brother who, in retrospect, I am convinced was celiac/gluten intolerant. He had failure to thrive as a child, tremendous problems with eczema from birth. chronic diarrhea, and then later in life developed a seizure disorder which baffled his doctors - this was 30 years ago. They were initially passed of as petit mal, but became progressively worse and were uncontrrollled by meds. He passed away due to complications from a seizure ten years later. My sister and I are both self-diagnosed gluten intolerant/probable celiacs, and my other sister has gluten problems too which she chooses to ignore.

I, too, hope your daughter's problems can be resolved by going gluten free. Keep us informed.

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Hi Selly, the (Company Name Removed - They Spammed This Forum and are Banned) has a good article about the relation between the two.

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I had seizures before I was dx with Celiac, and felt recently as if I was going to have another one... Luckily I didn't...

But yes, I have had them... They started when I was 15...

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I had unexplained seizures before going gluten free. Actually they weren't sure if they were seizures or if I was fainting. My husband found me on the floor a couple times right after it happened (he heard the thud as I hit the floor once) and I usually had no memory of the minutes prior to it happening. I was tested for narcolepy, epilepsy, sleep apnea (because I also had extreme fatigue), I wore a heart monitor for a week, had an echocardiogram and had a scan of my entire spine. Everything came back normal. Since I went gluten free (almost a year ago now) I have not had any seizures/fainting. I don't have any evidence of a connection, but I would not be surprised.

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Hey all, first post here.

I was diagnosed with Celiac disease (after a large portion of diabetics at my children's hospital were tested because of their correlation) when I was 15, but stopped following the diet when I was 18 or so.

When I was 22, I had two grand mal seizures. After that I was put on Dilantin, a medication to rise a person's phenytoin levels which was slightly lower than it should have been.

I was then stable until last year (age 28) when I had two minor seizures within a couple of months.

No one ever mentioned the possible connection between my diagnosis of celiac disease and seizures. I've recently been tested for Gluten insensitivity and my tests were through the roof, so I clearly do have Celiac disease.

I'm hoping gluten was the cause of my seizures as I never really knew why they occurred.

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I, too, hope you remain seizure-free now. From my limited experience with my brother, his seizures were petit mal-type, more a just kind of phasing out and not "being there" for a while mostly. No medication ever helped, he was never diagnosed celiac (although I KNOW he was), and they did become more frequent as time passed. Let's hope that whoever made the connection with celiac was on the right path and you are "cured" of this pesky condition. My best wishes to you. :)

And by the way, welcome to the board.

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