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 so before I was diagnosed with celiac about three months ago I began having a lot of small seizures a day up to 20, and I saw a neurologist for a long time and just couldn't seem to find out what was causing it after mri's (found one lesion) and did a 5 day eeg, until then I was recently diagnosed and I'm seeing my G.I. again next Friday I want to talk to him about the seizures because now when I am contaminated with gluten I have seizure auras, is there anybody else that  experiences seizures from their celiac? 

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Hi, I have similar symptoms but no doctor has been able to tell me that gluten caused my seizures. 

I was diagnosed with idiopathic epilepsy in 1998. (My neurologist told me that idiopathic means "the idiots don't know why.").  I had 3 seizures in 1997/1998 and then went on medication. In 2004 I was weaning off meds and unfortunately, the seizures came back and I had 6 or 7 of them between 2004-2006. When I had the last seizure in 2006, I had an aura for the first time.  I felt weird and like I was having an out of body experience and then had the seizure.

I've been on medication and haven't had a seizure since then. HOWEVER, in 2015, I was on the subway and felt like I was having an aura. I freaked out and got off the train my family picked me up and took me to urgent care. I explained to the doctors that it felt like a seizure was coming on, but I never did have a seizure. They increased my seizure meds dosage. The auras started happening everyday, but no seizure.  Then at some point I realized that when I was having feeling of the aura, I also had a feeling of having to go to the bathroom. I had loose stools and  felt better after I went. After a few weeks I wondered if maybe it wasn't a seizure aura but that something else was going on with my digestive system. My doc first treated me for irritable bowel syndrome but then blood work showed a mild gluten intolerance. An endoscopy then showed that I have Celiacs. 

I've been trying to figure out if all the seizures from before could have been from gluten, but I haven't been successful. One doctor told me there could be a correlation between celiacs and epilepsy but that there's not enough research to show causation. 

I've been glutened three times since going gluten free and each time, I had that sensation like a seizure might be coming on, and then felt terrible for days, but no seizure. 

I wish I had more answers, but want you to know you're not alone. 

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36 minutes ago, anny11 said:

Hi, I have similar symptoms but no doctor has been able to tell me that gluten caused my seizures. 

I was diagnosed with idiopathic epilepsy in 1998. (My neurologist told me that idiopathic means "the idiots don't know why.").  I had 3 seizures in 1997/1998 and then went on medication. In 2004 I was weaning off meds and unfortunately, the seizures came back and I had 6 or 7 of them between 2004-2006. When I had the last seizure in 2006, I had an aura for the first time.  I felt weird and like I was having an out of body experience and then had the seizure.

I've been on medication and haven't had a seizure since then. HOWEVER, in 2015, I was on the subway and felt like I was having an aura. I freaked out and got off the train my family picked me up and took me to urgent care. I explained to the doctors that it felt like a seizure was coming on, but I never did have a seizure. They increased my seizure meds dosage. The auras started happening everyday, but no seizure.  Then at some point I realized that when I was having feeling of the aura, I also had a feeling of having to go to the bathroom. I had loose stools and  felt better after I went. After a few weeks I wondered if maybe it wasn't a seizure aura but that something else was going on with my digestive system. My doc first treated me for irritable bowel syndrome but then blood work showed a mild gluten intolerance. An endoscopy then showed that I have Celiacs. 

I've been trying to figure out if all the seizures from before could have been from gluten, but I haven't been successful. One doctor told me there could be a correlation between celiacs and epilepsy but that there's not enough research to show causation. 

I've been glutened three times since going gluten free and each time, I had that sensation like a seizure might be coming on, and then felt terrible for days, but no seizure. 

I wish I had more answers, but want you to know you're not alone. 

I hope you get some clarity soon, please do look into leaky brain. My friend was telling me this earlier, sometimes seizures can originate from the gut, but celiac can absolutely bring on leaky brain which is a very great cause of seizures just wanted to let you know so you can get some clarity thank you :)

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I was diagnosed with a seizure disorder years before I finally got diagnosed celiac. It was a feature of gluten ataxia and I haven't had one now since a short time after diagnosis. The lesion your docotr found on the MRI was likely a 'UBO' or unidentified bright object. These are sometimes mistaken for the lesions you get with MS but the debris found in a spinal tap that is present with MS will not be found. It is caused by the antibody action in the brain.  A GI doctor is unlikely to know what gluten ataxia is, heck even my Neurologist didn't know what they were. Thankfully the gluten free diet is the only med you need if you are ataxic. Sublingual B12 may help the healing process along.  It may take a bit of time but if your 'seizures' are being caused by gluten they should will resolve gluten free.

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Thanks Kristen--I haven't looked into leaky brain, but will certainly do so!  

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4 hours ago, anny11 said:

Thanks Kristen--I haven't looked into leaky brain, but will certainly do so!  

I hope Kristen meant leaky gut, not leaky brain. :)

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I think I know EXACTLY what you speak of, as I too have absence seizures - several a day.  They're really short and don't actually register on an EEG on their own, but they do within the test.   I only began to connect it to food when my husband and I went on a high protein/low carb diet - the seizure disorder seemed to improve, although it never went away.  Fast forward to this past fall and "normal" eating and the seizures started becoming more frequent, headaches, joint pain, horrible fatigue, etc.  When the peripheral neuropathy set in, I panicked.  Lots of testing and long story short - celiac.  

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This describes exactly what I've experienced for the past few years. What I think are absence seizures started a few years ago and I also had the urge to go to the toilet when I got them. Then in the summer of 2015 I had a full blown seizure. MRI and EEG fine but since then I have been diagnosed with coeliac and have still had the absence seizures every so often. I keep track of these and am convinced I have them when I've accidentally been glutened. I've also been taking vitamin b complex for a couple of weeks now and haven't had one in a couple of months (touch wood). Very interesting to read that other people have experienced the same thing. I have an appointment with a neurologist at the end of this month but am almost certain he will tell me it has nothing to do with gluten when I am 100% sure it is. 

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On 5/5/2017 at 5:47 PM, GFinDC said:

I hope Kristen meant leaky gut, not leaky brain. :)

Leaky brain is a thing, for real. Things cross the blood brain barrier that are normally too large to do so. I had a naturopathic doctor test mine with GABA.

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On 5/5/2017 at 5:47 PM, GFinDC said:

I hope Kristen meant leaky gut, not leaky brain. :)

Leaky brain is actually a thing as is leaky gut lol

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I’m at the hospital now after having a huge seizure today. They won’t believe it is gluten. They also said gluten intervenously is ok for celiac. Pfff. 

My seizure happened the morning after I ate at a restaurant .  I only ate fries and asked the cook about the frier. Could be a coincidence. I used to have seizures until 12 years ago and they stopped, until now. 

Although it is good to know that it is not all in my head, it saddens me that anyone else has to deal with this. I wish you all the best.

I keep reading “don’t let celiac rule your life” and “don’t live in fear of food” all nice sentiments, but how? I just had a few supposedly safe fries and i’ve been in the hospital for 8 hours already. I don’t want to blame everything on Celiac, but I feel I am wasting my time constantly trying to convince doctors. Yikes sorry I sound so negative. I have hospital bitchiness. 

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1 hour ago, healthysquirrel said:

I’m at the hospital now after having a huge seizure today. They won’t believe it is gluten. They also said gluten intervenously is ok for celiac. Pfff. 

My seizure happened the morning after I ate at a restaurant .  I only ate fries and asked the cook about the frier. Could be a coincidence. I used to have seizures until 12 years ago and they stopped, until now. 

Although it is good to know that it is not all in my head, it saddens me that anyone else has to deal with this. I wish you all the best.

I keep reading “don’t let celiac rule your life” and “don’t live in fear of food” all nice sentiments, but how? I just had a few supposedly safe fries and i’ve been in the hospital for 8 hours already. I don’t want to blame everything on Celiac, but I feel I am wasting my time constantly trying to convince doctors. Yikes sorry I sound so negative. I have hospital bitchiness. 

The good news is they don’t give gluten interveneously.  Gluten is a rather large molecule that would cause clots in the smaller veins.  

 

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Some imaging solution has it apparently, but not the one they gave me. Phew. Thanks 

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@healthysquirrel — I hope you feel better soon! 

 

 

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off topic, but, a researcher at Mass General, commonly known in these heah parts as "the general", feels that Alzheimer's may  be an infectious disease caused by leaky blood/brain barrier.

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Hi Squirrel,

Maybe it's time to stop eating fried foods in restaraunts?  Some things just aren't worth the risk.  There aren't many restaraunts I will eat in.  And if I do go to a restaraunt (rare) it is usually the same ones.  But I haven't eaten deep-fried food at a restaraunt in many years.  Typically restaraunts use the same oil for all fried foods.  So even if your fried item doesn't have gluten in it, it will be contaminated by the oil.  Some McDonalds use a separate fryer for french fries.

When I worked in a restaraunt several decades ago, we had separate fryers for french fries and breaded things.  But we also freshened up the fryer oil by frying white bread in them each day.  The thinking was that the white bread absorbed off flavors.  Great huh?  So even if you ordered french fries there, they would have been fried in gluten contaminated oil.

In that restaraunt, the 2 fryers were right next to each other.  And the fish dryer was the farthest away.  So if you were frying fish or mushrooms or whatnot, you had to cross the fish fry basket over the french fryer.  Even with separate fryers, there was plenty of contamination happening.  

Edited by GFinDC
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Hey there!

I'm out of the hospital! Feels nice to be free. I definitely will not ever try to eat fried food at a restauraunt again. I had asked the wait staff (x2) and the cook and know this place and have been going for years and it was not a busy time so we all had time to talk. I explained very well and in detail. I had zero digestive issues at all, the attack I had was the next day. Can you react that late ? I had no idea that my reactions could be that severe because I am normally so careful that I suppose I have not been glutened since diagnosis (other than beginners mistakes that didn't really affect me) I normally only eat only what I prepare. 

Thanks everyone for the additional info about fryers and the suport.

Silver living...no brain damage. I had to go for an mri anyway and now it is done at least. No white spots or lesions!!! (dr wanted to test for ms as I still can't walk well) Hope this experience informs someone else. 😅

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Hi Squirrel--I'm so glad to hear you're out of the hospital and that things seem okay.  I hope you continue to feel better.

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If I were dealing with DH or ataxia.....you bet I would not take ANY risks that would allow a potential exposure to gluten.  Just trying to avoid another autoimmune disorder is enough to keep me on track.   

Having to manage celiac disease is hard.  It is depressing and can be stressful.  Unlike other illnesses where there is medical support, the entire burden of managing celiac disease falls solely on the patient.  But it is what it is.  You learn to cope.  When you get good at it, it becomes second nature.  

Every celiac is different.  After a gluten exposure it can take time to develop antibodies or it can trigger other immune system issues that can mimic a gluten response.  It takes a few days for me to really feel a gluten hit and more than a month for me to be able to digest safe foods easily or regain dairy.   Sometimes, gluten is not the issue.  I could have sworn that I had been glutened a year and a half ago.  My antibodies were high yet I was taking months to feel well.  Turns out I had a different autoimmune disorder that flared and I just had to wait it out (small intestinal biopsies revealed healed villi).  Being gluten free definitely does help my other AI issues but not always.  

Be super strict.  Consider the Fasano diet.  That is my best advice.  

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On 12/2/2018 at 10:30 PM, cyclinglady said:

If I were dealing with DH or ataxia.....you bet I would not take ANY risks that would allow a potential exposure to gluten.  Just trying to avoid another autoimmune disorder is enough to keep me on track.   

Having to manage celiac disease is hard.  It is depressing and can be stressful.  Unlike other illnesses where there is medical support, the entire burden of managing celiac disease falls solely on the patient.  But it is what it is.  You learn to cope.  When you get good at it, it becomes second nature.  

Every celiac is different.  After a gluten exposure it can take time to develop antibodies or it can trigger other immune system issues that can mimic a gluten response.  It takes a few days for me to really feel a gluten hit and more than a month for me to be able to digest safe foods easily or regain dairy.   Sometimes, gluten is not the issue.  I could have sworn that I had been glutened a year and a half ago.  My antibodies were high yet I was taking months to feel well.  Turns out I had a different autoimmune disorder that flared and I just had to wait it out (small intestinal biopsies revealed healed villi).  Being gluten free definitely does help my other AI issues but not always.  

Be super strict.  Consider the Fasano diet.  That is my best advice.  

Very good advice. thanks! Sorry about your other AI issues, must be difficult to follow, even though you are super knowledgable! I answered you from the hospital, but it seems it didn't work.

I thought about it again and even thought it was likely the fries, it could also have been a reaction to a certified gluten-free corn cereal with certified gluten-free oat milk. I felt off directly after that, although I have never had an issue with corn or oats. it is so hard to tell exactly what it was. Today I was able to go to a class and go see my physio. I am tired, but feel fine. 

I haven't been diagnosed with DH or ataxia. The only ataxia symptom I have is a difficult time with my legs, I have no other symptoms, aside from this seizure that might be unrelated with no damage shown in the MRI or EEG. The leg MRI from months ago showed a bit of arthritis in the large toe, plantar fascitis, tendonitis and neuromas. It is hard to say if this is related to Celiac or not, but as you say, I need to manage this myself and continue doing my own research. My legs are getting slowly better with exercise and shockwave therapy (painful, but it works well for plantar fasciitis). I am still sort of new here so if I am hogging this post, please let me know. thanks :)

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No way you are hogging this post!  We are bound to help someone else.  

I am sorry that I sounded so harsh.  It was not my intent.  I am glad that you are out of the hospital.  I can imagine just how frustrated you are not knowing what exactly is going on with you.  I have been there and done that!  

Do not give up!  Keep researching.  Eventually, it will all come together.

You and your doctors will figure it out.    There is a light at the end of the tunnel.  It might have been gluten or might not have been gluten that landed you in the hospital.    Celiac disease is definitely systemic and doctors know so little about the gut and the immune system.  Just move forward.   It just takes time!  

Again, sorry for being so abrupt.  😔

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11 minutes ago, cyclinglady said:

No way you are hogging this post!  We are bound to help someone else.  

I am sorry that I sounded so harsh.  It was not my intent.  I am glad that you are out of the hospital.  I can imagine just how frustrated you are not knowing what exactly is going on with you.  I have been there and done that!  

Do not give up!  Keep researching.  Eventually, it will all come together.

You and your doctors will figure it out.    There is a light at the end of the tunnel.  It might have been gluten or might not have been gluten that landed you in the hospital.    Celiac disease is definitely systemic and doctors know so little about the gut and the immune system.  Just move forward.   It just takes time!  

Again, sorry for being so abrupt.  😔

i didn't find you abrupt at all! I definitely need to learn more about ataxia and I found your info very helpful, so no worries ! The more info the better!

PS I have never been on a forum, so I was just making sure if I am using it correctly 😊

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healthysquirrel,

I am not sure why I had haven't contributed/commented to/on this thread before but I think it was because I needed to find some time to do the research again and when you reactivated the thread it came to the forefront.

I prefer like Knitty Kitty to quote where I have found our read the research but I don't always have time to find it again.

So your seizure episode triggered me to loook it back up.  And I only get to contribute to the forum only a coupe of days a week anymore but I hope it helps.

So today is the day!

I came across this (the benefits of Manganese) looking for something to help my prediabetes and in this case the possible causes of seizure including Low Blood Manganese levels. 

Or just abnormal Manganese levels have been tied to Epilepsy/Seizures. So be careful and don't overdo Manganese but some more research about it couldn't hurt.

But abnormal Manganese levels does need to be researched more for it's prevalence in seizures.

Here is a good overview on the topic/issue from the Lancet.

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(04)15558-X/fulltext?code=lancet-site

And I don't remember where you said if your were taking PPIs or not?

Severely low Magnesium levels can also trigger seizures in some people.

I had Charley horses from being low in Magnesium.

see this Merck Manual article about this topic known as hypomagnesia.

https://www.merckmanuals.com/home/hormonal-and-metabolic-disorders/electrolyte-balance/hypomagnesemia-low-level-of-magnesium-in-the-blood

Your would have to be taken it (the PPIs) at least 6 months or more for this to happen.

I hope this is helpful as always but it is not medical advice.

 “Consider what I say; and the Lord give thee understanding in all things” this included.

2 Timothy 2: 7 

Check your medicines' too. ... I have had bad drug reactions that caused my skin to crawl before as a bad side effect of the medicine. . ... before stopping it to avoid seizures as what they "termed a rare" side effect.

Posterboy by the grace of God,

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On 12/5/2018 at 12:29 AM, Posterboy said:

healthysquirrel,

I am not sure why I had haven't contributed/commented to/on this thread before but I think it was because I needed to find some time to do the research again and when you reactivated the thread it came to the forefront.

I prefer like Knitty Kitty to quote where I have found our read the research but I don't always have time to find it again.

So your seizure episode triggered me to loook it back up.  And I only get to contribute to the forum only a coupe of days a week anymore but I hope it helps.

So today is the day!

I came across this (the benefits of Manganese) looking for something to help my prediabetes and in this case the possible causes of seizure including Low Blood Manganese levels. 

Or just abnormal Manganese levels have been tied to Epilepsy/Seizures. So be careful and don't overdo Manganese but some more research about it couldn't hurt.

But abnormal Manganese levels does need to be researched more for it's prevalence in seizures.

Here is a good overview on the topic/issue from the Lancet.

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(04)15558-X/fulltext?code=lancet-site

And I don't remember where you said if your were taking PPIs or not?

Severely low Magnesium levels can also trigger seizures in some people.

I had Charley horses from being low in Magnesium.

see this Merck Manual article about this topic known as hypomagnesia.

https://www.merckmanuals.com/home/hormonal-and-metabolic-disorders/electrolyte-balance/hypomagnesemia-low-level-of-magnesium-in-the-blood

Your would have to be taken it (the PPIs) at least 6 months or more for this to happen.

I hope this is helpful as always but it is not medical advice.

 “Consider what I say; and the Lord give thee understanding in all things” this included.

2 Timothy 2: 7 

Check your medicines' too. ... I have had bad drug reactions that caused my skin to crawl before as a bad side effect of the medicine. . ... before stopping it to avoid seizures as what they "termed a rare" side effect.

Posterboy by the grace of God,

@posterboy Thanks for the research and links. My magnesium levels are the lowest possible within the normal range. I am really thankful for this information though and will show it to my doctor, I will see a new doctor wednesday who is hopefully more informed. I am still trying to find out what happened :) I notice high platelets and white blood cells, but nothing too bad. The hospital said that maybe I had the flu and it made me have a seizure, even after I repeatedly told them that I have Celiac disease. hahahaha. Anyway, I am seriously trying to learn well in order to educate properly. Curious how people here get diagnosed with gluten ataxia? In what country? I am so unsure if I have it, but it would be so fun to rule that out. 

Anyway, thanks again for taking the time to answer me. 5 or 6 months in and i'm still a newbie in many ways 😅

Take care!

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