Celiac And Seizures?

[imsohungry]

Hi everyone.

I realize I may not get many (if any) responses to this post because it's kind of an obscure topic, but here goes... has anyone had seizures that improved after going gluten-free? I've mentioned several times over the years on this forum that I have refractory epilepsy (seizures that won't go away despite treatment). I've found some information online recently about celiac and seizures, and I want to know more. It's so hard to find a dr. who truly understands celiac or one that truly understands epilepsy...combining the two and finding a doctor who knows about both is probably impossible. So I thought I would do the research myself. Any suggestions? Anyone out there besides me with seizures and epilepsy? More importantly, has anyone had seizure relief after going gluten-free?

Thanks! -Julie

[Guest nini]

my dad has epilepsy and I was dx'ed with non specific seizure disorder, my seizures went completely away when I went gluten-free... and only return when accidentally glutened. I read somewhere about a report that reccommeded that anyone diagnoed with epilepsy be tested for Celiac...

[jcc]

Hi everyone.

I realize I may not get many (if any) responses to this post because it's kind of an obscure topic, but here goes... has anyone had seizures that improved after going gluten-free? I've mentioned several times over the years on this forum that I have refractory epilepsy (seizures that won't go away despite treatment). I've found some information online recently about celiac and seizures, and I want to know more. It's so hard to find a dr. who truly understands celiac or one that truly understands epilepsy...combining the two and finding a doctor who knows about both is probably impossible. So I thought I would do the research myself. Any suggestions? Anyone out there besides me with seizures and epilepsy? More importantly, has anyone had seizure relief after going gluten-free?

Thanks! -Julie

Hi Julie~

I've known several who have gluten related seizures that either went away completely or were greatly reduced/less severe once off gluten. There is a lot of information out there regarding seizures/gluten, and I don't know why our neurologists aren't a little quicker to look for gluten sensitivity/celiac disease in seizure patients with family history of autoimmune disease or nutritional deficiency.

In any case~ here is a lot of info about gluten/celiac/seizures:

Open Original Shared Link

Hope this helps~

Cara

[evie]

Hi everyone.

I realize I may not get many (if any) responses to this post because it's kind of an obscure topic, but here goes... has anyone had seizures that improved after going gluten-free? I've mentioned several times over the years on this forum that I have refractory epilepsy (seizures that won't go away despite treatment). I've found some information online recently about celiac and seizures, and I want to know more. It's so hard to find a dr. who truly understands celiac or one that truly understands epilepsy...combining the two and finding a doctor who knows about both is probably impossible. So I thought I would do the research myself. Any suggestions? Anyone out there besides me with seizures and epilepsy? More importantly, has anyone had seizure relief after going gluten-free?

Thanks! -Julie

Julie; Did you post on the "OMG, I might be ale to drink milk" thread this spring? I remember someone asking about seizures and celiac. Have you been diagnosed long with celiac and have you improved? I read the post about seizures but I think that pertained to children or at least partly. I hope you find your answer!!

I have been having an unusually gassy/ some cramping day, not used to that!! Had been better and not sure why that came back. I took my food to a resturant & ate it while hubby ate there, I had their iced tea yesterday but did not think possible to put gluten in tea!! Take care. evie

[ravenwoodglass]

Hi everyone.

I realize I may not get many (if any) responses to this post because it's kind of an obscure topic, but here goes... has anyone had seizures that improved after going gluten-free? I've mentioned several times over the years on this forum that I have refractory epilepsy (seizures that won't go away despite treatment). I've found some information online recently about celiac and seizures, and I want to know more. It's so hard to find a dr. who truly understands celiac or one that truly understands epilepsy...combining the two and finding a doctor who knows about both is probably impossible. So I thought I would do the research myself. Any suggestions? Anyone out there besides me with seizures and epilepsy? More importantly, has anyone had seizure relief after going gluten-free?

Thanks! -Julie

I was diagnosed with subilleal seizures and took some very toxic meds for a long time. I have had no seizures since becoming gluten-free. My DD also used to have petit mal seizures, these were gluten related for her also.

[imsohungry]

The baby is crying so I don't have much time to respond right now...thank you so much for sharing with me. Got a lot I want to say. I'll be back on a little later (during naptime). -Julie

[imsohungry]

First off, thanks to nini and raven for sharing your stories and history with me.

Cara, Thanks for the link Evie, Hope you're feeling better!

I am so excited! This is the first hope I've had in years. I actually found a lot of information on-line about seizures and/or epilepsy and Celiac. Most of it was very encouraging. I found several "scientific" research sites and journal publications about gluten intolerance and brain damage to the white matter. There was also info. regarding calcification in the occipital lobe. This is VERY interesting to me because I have damage to my occipital lobe and white matter! However, I have never had tramatic brain injury...so why the damage? My doctor said my mother may have breathed in unknown toxins while she was pregnant with me???? But as we all know, doctors often play a "guessing game."

Although I have been diagnosed with Celiac for several years (about two I think) and on my own I eat gluten-free, I know that I am not as careful about cross-contamination as I should be (particularly when my hubby cooks dinner). But if there is ANY CHANCE that my seizures may go away, I'll get the hubby on the ball about not stiring multiple pots with the same spoon...something that has been mentioned repeatedly.

Thanks to everyone! A very hopeful -Julie

[jcc]

My doctor said my mother may have breathed in unknown toxins while she was pregnant with me???? ....

This is much like the unknown bump to the head suggested as the cause for my daughter's seizures

I obviously don't think all seizures are related to gluten or other food sensitivity, but I suspect far more are than are being recognized. Same goes for nutritional deficiency~ I've met at least a couple of others whose children stopped having seizures once correcting a B6 deficiency (due to pyroluria, like my daughter).

I recommend in addition to being more vigilant about gluten cross contamination that you keep a food diary. Sometimes other foods can trigger seizures as well...including casein, soy, msg, aspartame. So, you may want to limit or avoid these, but also keep a food journal to see if any patterns emerge.

I also recommend taking a multivitamin with good B-complex coverage, and because of the white matter lesions (?)...you might want to add 1000mcg. of oral B12 daily. B12 deficiency can also cause white matter lesions that looks very much like the white matter lesions caused by gluten sensitivity, and B12 deficiency not uncommon in those with gluten sensitivity/celiac. So...it is a simple base to cover! I'd also add 50mg of P5P type of B6. Vitamin B6 is important to neurotransmitter 'business' - GABA production. You can research other vitamins possibly useful to seizure control from some of the other links on the Seizure/Gluten page, or elsewhere, but I'd try this much at least~

You might also want to read the links about the Specific Carbohydrate Diet (can be found in the Gluten/Seizure link I left), and the links to Dogtor J's site, if strict removal of gluten alone doesn't give you seizure control. I've known people who had seizures related only to casein, only to gluten, both, soy, etc.

Start with vitamins and strict gluten elimination...give it three-six months...and move on from there if necessary. That, or plunge into one of the more restrictive diets first, and then add back. For many celiacs, though, gluten is the only issue. There is reason to be cautiously hopeful.

Good luck!

Cara

[jcc]

I read somewhere about a report that reccommeded that anyone diagnoed with epilepsy be tested for Celiac...

There are a few studies and reports that say so, yet when I was exploring gluten/seizures in regard to my daughter six years ago... I couldn't interest anyone!

The neurologist plead ignorance (at least he was up front about it ). He also said nutritional deficiencies weren't an issue because she had no signs of vitamin deficiency. (He was looking for the flashing light on her foreheard...not her muscle spasms, dented fingernails, tooth enamel defect, seizures, stretch marks in a thin 12 year old, mood swings, etc).

The GI said that the neurological complications of gluten sensitivity/celiac were unproven/speculative, and because my daughter didn't test 'gold star' dismissed the possibility altogether.

And when I asked the local Epilepsy Foundation to put a paragraph in their newsletter several years ago regarding the Celiac / Seizure connection (wasn't even shooting for gluten sensitivity)...the medical advisor said that the evidence was not strong enough. I had supplied my arsenal of abstracts, but I doubt they ever made it to him.

ARGHHHH......

I like the M.D. ....More Drugs. I have not heard that one, but I love it! And AED's can be quite toxic, and although in some cases they are a godsend to people, if you can stop seizures through dietary changes...then.... isn't that a better option?

Leave your drugs in the chemist's pot if you can heal the patient with food.....Hippocrates

ANd I notice you also have a googlepages website...I will have to go check it out!

Have a great day~

Cara

[imsohungry]

Cara,

Thank you so much for all of your feedback! I don't even want to mention my gluten/seizure hypothesis to my Neuro./Gastro./or Rheumy. I'm afraid they will all think I'm crazy...and trying to connect things that simply have no connection. However, I've already been encouraged to eat healthy and take a multivitamin by all of them...so my Celiac/seizure theory will just be kept to myself and I will see if I reap the benifits. Of course I'll continue all of my meds., but I see no harm in testing out my research to see if I get positive results. After all, I've been using their "proven" scientific advice and remedies for fifteen years...and still have regular seizures. Thanks for your support. Blessings! -Julie

[Guest AutumnE]

Yep I did. After 5 years on tegretol and they still didnt stop and then I was taken off it and have scaring on my veins from the bloodwork every month since they were having a very hard time controlling it. I went off the meds since they told me not to think about it since they were petit mals

I went off them six years with a fear of driving but thankfully Im a sahm so I dont really drive anywhere anyway. After going gluten free they completely stopped. I generally had 3 to 5 a week.

[Guest nini]

I spent a few years on Dilantin (sp?) has anyone else taken that for seizures?

[marciab]

I was on Klonopin for nocturnal myoclonous for 16 and 1/2 years and now I am off of it after going gluten free for 11 months. I was jerking myself awake every time my body would go into REM. At times I would have to supplement the Klonopin with other meds because the jerking was so bad.

I also had myoclonous that affected the hands too. I was unable to write legibly or do anything that required a steady hand. My hand would jerk. I never knew what it was until a couple of days ago. Even though I saw 4 different nuerologists

I was jerking some during the day too, but never knew what that was all about. I was diagnosed with petit mal seizures too. I'm not sure if those are gone yet. They would typically come on if I over did it.

I was able to walk through the mall today without getting dizzy. First time in 16 and 1/2 years.

I have white matter on my brain too.

This makes me so sad that it appears my diet was the cause of my seizures all this time

[jcc]

My daughter was on Depakote for three years, and tolerated it relatively well, although in the end she had a lot of cognitive dulling.

THose of you have noticed that a gluten free diet has helped your seizures, you might want to get your experience out on the EFA website.

Have you ever seen Tammy's story?

Open Original Shared Link

Open Original Shared Link

Well, this subject can really get me going. I think it is awful that ANYONE has to suffer a life time of seizures and medication side effects if early diagnosis and a dietary change might change it. Not everyone can come off of medication, but some people can....over time. And again, I am suggesting all seizures are related to diet and nutrition....but I believe so many more are than are being realized.

And of course, there will always be those who would rather take AED's and eat pizza. I'm afraid this was my daughter's attitude at about age 16, especially since the doctors were only concerned with a gold star diagnosis. Thankfully, the vitamins make a difference for her...and we now know she was definitely low in B6, at least.

I love forums, where people can exchange experiences and learn things they might never find out from their doctors. I know I never would have learned about the gluten/seizure connection from ANY of our doctors.

Good night!

Cara

[gfp]

Hi Carla... (stevel) have you heard from Paris Hanna recently or at all?

I think she is your side of the pond at the moment for sad reasons.

[evie]

My daughter was on Depakote for three years, and tolerated it relatively well, although in the end she had a lot of cognitive dulling.

THose of you have noticed that a gluten free diet has helped your seizures, you might want to get your experience out on the EFA website.

Have you ever seen Tammy's story?

Open Original Shared Link

Open Original Shared Link

Well, this subject can really get me going. I think it is awful that ANYONE has to suffer a life time of seizures and medication side effects if early diagnosis and a dietary change might change it. Not everyone can come off of medication, but some people can....over time.

And of course, there will always be those who would rather take AED's and eat pizza. I'm afraid this was my daughter's attitude. Thankfully, the vitamins make a difference for her...and we now know she was definitely low in B6, at least.

I love forums, where people can exchange experiences and learn things they might never find out from their doctors. I know I never would have learned about the gluten/seizure connection from ANY of our doctors.

Good night!

Cara

My, My...those two URL's are really rich/ information..not only of seizures but also the connection between celiacs and zonulin. Dr Fazano & others have been studying how zonulin causes gluten and small food particles to get through the intestine walls in to the blood stream thus creating food intolernces!! I hope they can work fast, they may come up/ something helpful for all of us or at least our children or anyone coming up with our type problems in the future. I hope some of you foloow up on these tips and want to discuss what you learn!! Have a good day all. evie

[imsohungry]

Wow! You all are so informative...

Cara, thanks again for the links! VERY interesting and helpful. You are right, none of my doctors would ever dream of mentioning anything about diet/gluten-free/vitamin and seizure connection. I LOVE discussion forums!

Nini,

I've been on Dilantin, but it didn't do much for seizure control. It made my arm hair grow long and my gums swell up over my teeth...boy, I was a beauty!

Autumn,

I've been on Tegretol; my body REALLY improperly metabolized that medicine! Doctors told me I was dramatic; until they started doing regular blood work and discovered that I was consistantly toxic when placed on a dose high enough to help control seizures. That is one med I will NEVER let them place me on again! I'm so glad the seizures have left you alone. God bless.

Marcia,

I have been on Klonopin. Actually, I'm tapering off of it right now as an add-on therapy to Keppra and Trileptal. I can definitely understand your frustration if your diet was in fact the cause of your seizures for so long.

I agree with everyone that it is rediculous that people with refractory (uncontrolled) seizures aren't at least told about the possible effects of diet, vitamins, (and who knows what else) on their seizures. They are very quick to "chalk up" our seizures to stress or coping skills and medication compliance, when they haven't educated themselves about the workings of the WHOLE BODY and how one part affects the other. Uggghh! (I rarely use frowny faces so you know I feel stongly about this)

-Julie (research in progress)

[imsohungry]

Bump for Sparkles

[Kat-Kat]

Hi everyone.

I realize I may not get many (if any) responses to this post because it's kind of an obscure topic, but here goes... has anyone had seizures that improved after going gluten-free? I've mentioned several times over the years on this forum that I have refractory epilepsy (seizures that won't go away despite treatment). I've found some information online recently about celiac and seizures, and I want to know more. It's so hard to find a dr. who truly understands celiac or one that truly understands epilepsy...combining the two and finding a doctor who knows about both is probably impossible. So I thought I would do the research myself. Any suggestions? Anyone out there besides me with seizures and epilepsy? More importantly, has anyone had seizure relief after going gluten-free?

Thanks! -Julie

[Kat-Kat]

YES!!!!!! And you are the only other person I have had contact with. Did you have sickness when you were a child and none of the dr. could tell what was going on. I did I was sick and had very bad stomach pain! Very often put in the hospital from lack of food. I could not keep it down and you are right try to find a Dr. that knew anything about both one just said well you have seizures the other said you have something wrong with your stomach Oh I thought I was the only one that had the two together. they say that it is only 10% of celiac have nerve damage. how much have you found out. I have read every thing I can get my hands on. I have been on Dilantin for 3 years it makes little differance if I and gluten in me I am gone. Forget the eat out deal. WOW you are not alone!!! and WOW!! I am NOT ALONE!!

[imsohungry]

YES!!!!!! And you are the only other person I have had contact with. Did you have sickness when you were a child and none of the dr. could tell what was going on. I did I was sick and had very bad stomach pain! Very often put in the hospital from lack of food. I could not keep it down and you are right try to find a Dr. that knew anything about both one just said well you have seizures the other said you have something wrong with your stomach Oh I thought I was the only one that had the two together. they say that it is only 10% of celiac have nerve damage. how much have you found out. I have read every thing I can get my hands on. I have been on Dilantin for 3 years it makes little differance if I and gluten in me I am gone. Forget the eat out deal. WOW you are not alone!!! and WOW!! I am NOT ALONE!!

Kat-Kat,

You should really check out the links on this thread. Cara and others provided some excellent resources! Nope, you are not alone...and neither am I. It seems that many of us have seizures and/or neurological complications due to (or made worse by) gluten! Keep on researching. Take Care. -Julie

[ravenwoodglass]

WOW you are not alone!!! and WOW!! I am NOT ALONE!!

No your not alone. Welcome and I think you will find there are quite a few of us that have neuro problems from gluten. Mine have mostly healed, the seizures especially but some ataxia remains. It took a long time but the support and knowledge I have gained from all on the board has helped me feel much less alone and isolated. I hope for the same for you.

[jcc]

Hi Carla... (stevel) have you heard from Paris Hanna recently or at all?

I think she is your side of the pond at the moment for sad reasons.

Hi Stevel...

No, I haven't heard from Hanna recently, although I have since BT crashed. I'm sorry to hear there is sad news.

BTW....good news tonight...an temporary BT2 site has been established until the new one returns.

Open Original Shared Link

Cara

[jcc]

I was able to walk through the mall today without getting dizzy. First time in 16 and 1/2 years.

Hi Marcia~

My daughter had this mall problem, too! Do you know why? I've met many others as well. Is it the lights? smells? people? What??? Panic?? Some people say that panic fits with TLE, but why are malls such a big problem? My daughter did alright in other crowded places, airplanes, etc, but in malls or large stores like IKEA.... she always had problems....felt sick, almost panicked, had to get out....looked seizurish.

Cara

I was able to walk through the mall today without getting dizzy. First time in 16 and 1/2 years.

Hi Marcia~

My daughter had this mall problem, too! Do you know why? I've met many others as well. Is it the lights? smells? people? What??? Panic?? Some people say that panic fits with TLE, but why are malls such a big problem? My daughter did alright in other crowded places, airplanes, etc, but in malls or large stores like IKEA.... she always had problems....felt sick, almost panicked, had to get out....looked seizurish.

Or do you just have a history of dizziness, and the mall part was coincidence?

Cara

[marciab]

I was told that the dizzy feeling I got while walking through the mall was related to my hypoglycemia. And that my brain needed more food.

HOWEVER !!! Eating while walking around the mall never stopped it.

I can also stand in one place now without feeling the ground moving out from under me.

Sorry, I can't explain why. But, at this point, I think it was obviously diet related.

If my nuerological symptoms comes back, I am prepared to eat my words.