celiac and epilepsy

[raelize]

dd is diagnosed with complex partial seizures, i have celiac. i have done a little research online and have found studies done in italy and india and many celiac and epilepsy related sites that firmly link celiac and complex partial seizures.
but, our "wonderful" neurologists at children's hospital in d.c. kind of blew it off with a "hey if you wnat to try it, go ahead..' attitude. our ped is awesome and totally supports the possiblity of celiac causing her seizures.
is there anyone out there with ths diagnoses or history? there is only so much i can find online.
we have been gluten free for about 4 weeks. yesterday she had a peice of cake at a store sample and last night she had a little diarreha and today a big siezure. its been 4 weeks since her last siezure.
i a not sure if one serving of gluten like that would cause the seizure, but maybe it would. i know that if i ate that much cake i would be sick and in bed for days.
could it have triggered a seizure? right now i am saying yes, but i am also willing to admit it might be wishful thinking.

[ericswifey27]

we found this to be true with our son. He was gluten free and had not had any absence seizures for quite some time. Then he got some gluten (with chemical preservatives so IMO double whammy), and had a seizure within 5 minutes. We have not noticed a seizure incident again, cross fingers. We have a 24 hr. EEG planned in September to see if all is clear.

Incidently, I am gluten intolerant. I don't know if I have celiac because it's my understanding that I have to be eating gluten in order for it to show up on the tests as celiac. And I don't want to torture myself that way. Have you found that to be true with testing also?

Anyway I just wanted to reiterate that yes, seizures and diet can be related You've seen it happen so don't let others tell you otherwise, definitely it's something to explore. He's an expert, but an expert in what? (Certainly he wasn't involved in studies linking seizures and celiac) Since he can't be an expert in everything, start educating yourself.

[an_aurora]

Wow, interesting! My 11 month old has epilepsy, and he's allergic to wheat.

[raelize]

no, i have been educating myself, that's why i have been researchiing so much. unfortunatly there isn't that much research done in the US, cause for the most part, diet as a causal factor isn't really respected here.
basically i have been wondering if this is as common as i think it is, did others find a nuerologist who supported this route?
dd had a blood test in may, which was negative, however- it is often negative in children cause they don't produce enough of an immune response to be picked up by the tests- the only true tests are diet challenges and intestinal biopsy. diet challenges are fine with me.
i also wanted to know for those who do have gluten caused epilepsy-how long did it take for a reaction? a day? a few minutes? as you said ericswifey- it was within minutes, for us it was about 10 hours- long enough for digestion and immune response i think.

thanks for your posts.

[laurata]

I am largely uninformed on the issue, but I have a friend whose son has a seizure disorder, and his neurologist (Seattle Childrens, iirc) recommended celiac testing. It came out positive. His seizures has lessened, but not completely gone away.

I do think gluten affects the brain of those who are sensitive, but I don't have any research to back it up- just my opinion.

[MindfulBirth]

My daughter's epilepsy is a little more complex, so while our neuro is open to alternative therapies, he says it is unlikely that hers is due to a gluten intolerance. He is supportive, however, of my trying to rid aspartame, high fructose corn syrup and other chemicals from her diet as he feels that they may play a part in some of her harder-to-control seizures.

I say go for it. Get the testing or do a food challange. I know that going gluten free is not easy, but there are tons of new products on the market now that make it easier.. and it certainly is better than putting your child on all the harsh anti-epilepsy drugs.

I do know of a mom in Maine whose son had seizures and they figured out pretty quickly that it was due to celiac. I'll see if I can track her down here on Mothering and have her stop by to tell you more about it.

[ledzepplon]

Okay, this isn't exactly the kind of scientific data your doctor might care about, but there was an episode of "Mystery Diagnosis" on the Discovery Health channel where a little boy had celiac, and it caused seizures (as well as other developmental delays). If it were my child, I'd certainly think it worth a try to go gluten free and see if that helps.

[raelize]

well, we are gluten free now. it isn't hard cause i am gluten free cause of my celiac. i'm not too concerned with whether thye tell me not to do it, i would rather not put her on drugs, but she responds well to what she's on now and i am willing to keep her on for the two year period once her seizures are under control.
i'm not at this point doing anymore testing cause the only thing left is intestinal biopsy and i'm not doing that. that would requrie her being on gluten for at least a week an sedated and the biopsy.

that is interesting laurata that your friends son's seizures only lessened. i had read that in many cases they will go away completely but that in some cases there has been calcification of the brain cells and that means that the seizures will continue. i am disappointed to see that in a child it didn't completely go away, i had hoped that it would only continue in an adult. although i suppose that he may have epilepsy regardless of his celiac status and it would only lessen.

[ericswifey27]

Originally Posted by rachel_eva

no, i have been educating myself, that's why i have been researchiing so much. unfortunatly there isn't that much research done in the US, cause for the most part, diet as a causal factor isn't really respected here.
basically i have been wondering if this is as common as i think it is, did others find a nuerologist who supported this route?
dd had a blood test in may, which was negative, however- it is often negative in children cause they don't produce enough of an immune response to be picked up by the tests- the only true tests are diet challenges and intestinal biopsy. diet challenges are fine with me.
i also wanted to know for those who do have gluten caused epilepsy-how long did it take for a reaction? a day? a few minutes? as you said ericswifey- it was within minutes, for us it was about 10 hours- long enough for digestion and immune response i think.

thanks for your posts.

sorry! I know you are educating yourself, that was kind of a general statement to everyone to say, hey parents, we have to take the reins sometimes! Which I find frustrating, lame and unfair, but that's where we're stuck.

I think another part of why it's so difficult to pin down is how different it is for everyone. For example with the gluten, we know immediately he has had some- this is when we noticed a seizure right after, and also behaviorally the effect is immediate. Your comment that 10 hours is about the time for digestion and immune response is food for thought- Is my child completely unable to digest gluten and that is why it is more immediate? (I have wondered this in the past because TMI his poops are so pale and floaty, it does not seem possible than any food got absorbed and then passed.) I will start poking around for info on that. But for some of his other allergies it is more delayed. It has taken us FOREVER to discover that Vanilla (not strawberry, not chocolate) ice cream with fudge after dinner means that night about 6-7 hours later) he will wake up in night terrors and horrendous tantrums. All ice cream is out anyway now- we were gf now we are going gfcf to see if there are additional changes. But yes, it it is totally puzzling how delayed the reactions can be.

[ericswifey27]

Originally Posted by ledzepplon

Okay, this isn't exactly the kind of scientific data your doctor might care about, but there was an episode of "Mystery Diagnosis" on the Discovery Health channel where a little boy had celiac, and it caused seizures (as well as other developmental delays). If it were my child, I'd certainly think it worth a try to go gluten free and see if that helps.

Hey, I recognize you!

wow, that video makes me want to schedule an endoscopy for J. He had one test for celiac that his allergist ordered that said no, then we got additional testing that said he is indeed allergic to wheat and gluten. It seems so subjective, depending on what process, who's doing it. I'm going to email the video to our family doctor!

[raelize]

from my understanding, ericswifey- the blood tests for kids are spotty at best. the best thing is the intestinal biopsy- but your kid has to be eating gluten for ata least a week to show inflammation. i don't want to do that with dd. and i don't really want to subject her to yet ANOTHER test especially not one where she has to be sedated.
or you can do what you seem to be doing and just do food challenges- meaning eliminate it from your diet and then eat soem adn see if there is a change.
but- if yo have a blood test that is positive then it is definatly positive. but there are a lot of false negatives.

[leahmn12]

When I brought this subject up with my daughter's neurologist years ago, he basically smirked, shrugged his shoulders and said, "Sure, try it if you want to, but you'll never get away from gluten entirely because it's used as a binder in her medication." Bummer. Well, we follow the advice of our naturopath, which is to go GFCF. Celiac runs in our family. While our neuro is a nice enough guy, he has absolutely no faith in alternative modalities, and essentially rolls his eyes at the very mention of anything outside of the his realm. I think if you see a correlation, then that's what you should go with.

[LiminalOne]

Bumping this thread back up as a friend brought it to my attention months ago.

We are the family in Maine where my son had a strong link btw celiac and epilepsy that even the neurologist (who I absolutely adored btw) agreed with.

Finn started having seizures at 2 1/2 and they were varied. He had about a dozen myoclonic seizures a day plus occasionaly grand mal and absence. We tried various medications, which controlled the grand mal, but not the others. Reading on medline, I saw links in Scandanavian countries between the form of epilepsy he was potentially dx'd to have (called progressive myoclonic epilepsy (this is the one that causes brain calcifications and causes folks to lose developmental ground)) and celiac. I looked at my 105 pound husband and sent him for a blood test (which was positive). We went off gluten, but didn't see an immediate effect. A different neurologist talked us into going back on to test Finn. He also tested positive, so we went off gluten again (completely). All this time, we are having the same daily seizures; his EEG looks horrible, might still be a progressive form of epilepsy. Just as we are trying a new secondary med to get him off depakote and we are barely weaning him onto the new med (dose too low to have an impact according to neuro), the seizures stop overnight and they never never come back.

Talking to the allergist, he told me that the immune response to gluten for celiacs is slowly rising and slowly falling, so that it's not surprising that it took probably 3 months before we got his antibody levels done. And it was about that long before they stopped overnight. We DID stay on the meds for an extra year and then weaned off of them very slowly. Then had a final EEG and his brain waves were absolutely normal. He's 9 now and probably can't remember that time when he was 2 and 3, but there's something about him that's more open to other people's energy and the world in general. I can sense that he doesn't have the same skills at setting boundaries as other kids do. I try to nurture this openness while protecting him at the same time. He's really a very loving, lovely 9 yo boy...

Best of luck in this trying time. I really know what you are going through.

Angie in Maine
Finn, 9 and Theo 5