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Children With Seizures- Gluten A Factor?

infiore

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infiore Rookie
infiore
Posted

Hi! I am new here to the forum, my daughter has been diagnosed with seizures (she's 5) and a kinesiologist we took her to reccommended we take her off gluten. She has a pediatric neurologist we take her to and she is taking topamax for seizures (her seizure symptom is upward eye rolling). We had her tested for gluten intolerance through bloodwork but it didn't show her to be intolerant according to the levels. I would love to know if anyone else has had a similar experience and also I live in Waverly, IA- I wondered if anyone knew of any good doctors or support groups? I would love to take her off gluten in hopes of seizure control but even the ped neurologist says going gluten free won't help, as it only helps kids with autism.

Thanks so much!

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missy'smom Collaborator
missy'smom
Posted

My sister(she's 30) has seizures and has no answers. I'm encouraging her to check into celiac disease. More and more it's looking like she has it. Because of the seizures, I'm encouraging her to get a biopsy. I think she'll need more help than just a gluten free diet. Maybe additional testing and supplements as well as support from a Dr. with reguards to the seizure meds she's on now. She lives in Cedar Rapids(I live out of state) and as part of my search for a Dr. and support group I came across a support group contact on this site for Waverly. I contacted them and asked about Cedar Rapids. The lady responded right away and was very helpful. I posted under the doctors section and labeled it Cedar Rapids. I'll check my post and come back here with the contact info. for you.

Looks like you found my post. I posted the contact for you there.

Ursa Major Collaborator
Ursa Major
Posted

Your ped neurologist is very uninformed, if he states that a gluten-free diet only helps kids with autism. Seizures can absolutely be caused by gluten, and those seizures could possibly stop completely on a gluten-free diet, no meds needed.

The celiac disease tests are VERY unreliable in children under six, so the negative test result doesn't necessarily mean a thing. There are no false positives, but many false negatives. The villi have to be virtually destroyed for the blood test to be positive. Your daughter's intestinal damage may not be advanced enough for a positive test.

On the other hand, she may be gluten intolerant (rather than having celiac disease), and for many people who are gluten intolerant the damage is neurological, not necessarily intestinal.

In children that young the diet trial is the best and most reliable test. Why not give it a try, what have you got to lose?

CarlaB Enthusiast
CarlaB
Posted
Hi! I am new here to the forum, my daughter has been diagnosed with seizures (she's 5) and a kinesiologist we took her to reccommended we take her off gluten. She has a pediatric neurologist we take her to and she is taking topamax for seizures (her seizure symptom is upward eye rolling). We had her tested for gluten intolerance through bloodwork but it didn't show her to be intolerant according to the levels. I would love to know if anyone else has had a similar experience and also I live in Waverly, IA- I wondered if anyone knew of any good doctors or support groups? I would love to take her off gluten in hopes of seizure control but even the ped neurologist says going gluten free won't help, as it only helps kids with autism.

Thanks so much!

I have a friend whose daughter was having seizures last summer. The Children's Hospital told them there was no reason for the seizures, that it was psychosomatic. They had her tested for Lyme Disease, and it ends up the seizures were from the Lyme.

Don't pay attention to the CDC risk areas ... I got Lyme in an area that is "no risk".

You can get more info at Open Original Shared Link. Check it out and see if it's a fit. If it is, PM me and I'll tell you more.

Hopefully it's gluten, that's an easier problem to fix than Lyme. Lyme requires lots of medication, gluten requires avoiding a food ... Lucky me, I have both. :P

CarlaB Enthusiast
CarlaB
Posted
Hi! I am new here to the forum, my daughter has been diagnosed with seizures (she's 5) and a kinesiologist we took her to reccommended we take her off gluten. She has a pediatric neurologist we take her to and she is taking topamax for seizures (her seizure symptom is upward eye rolling). We had her tested for gluten intolerance through bloodwork but it didn't show her to be intolerant according to the levels. I would love to know if anyone else has had a similar experience and also I live in Waverly, IA- I wondered if anyone knew of any good doctors or support groups? I would love to take her off gluten in hopes of seizure control but even the ped neurologist says going gluten free won't help, as it only helps kids with autism.

Thanks so much!

I have a friend whose daughter was having seizures last summer. The Children's Hospital told them there was no reason for the seizures, that it was psychosomatic. They had her tested for Lyme Disease, and it ends up the seizures were from the Lyme.

Don't pay attention to the CDC risk areas ... I got Lyme in an area that is "no risk".

You can get more info at Open Original Shared Link. Check it out and see if it's a fit. If it is, PM me and I'll tell you more.

Hopefully it's gluten, that's an easier problem to fix than Lyme. Lyme requires lots of medication, gluten requires avoiding a food ... Lucky me, I have both. :P

  • 2 weeks later...
hlm34 Apprentice
hlm34
Posted

I am a diagnosed celiac and also have a seizure disorder. My first grand mal happened almost 2 years ago. About a month after that, i started dropping weight like crazy and became unable to eat anything. Soon after, i was given the blood test and an endoscopy. Both tested positive for Celiac. Before that seizure, i was healthy as could be. never had any celiac symptoms before that.

I live in Chicago and I have seen a couple world renowned brain surgeons and neurologists (one of them has a street named after him here in chicago!). I personally felt like the sudden Celiac syptoms and the seizure in such close proximity had to be related. They've had me on some pretty severe medications to control seizures. I was hoping that if Celiac was causing the seizures, then if I went on a gluten-free diet, i wouldnt need the anti-seizure drugs and suffer the side-effects of those drugs. I have had tons of EEGs and MRIs and all of these neurologists have told me that if the seizures were related to Celiac, the MRIs would reflect that. Apparently, there would be some sort of calcification or marking on the brain that would show that it was related to Celiac. I didnt believe it at first, but i visited different doctors and different hospitals and got the same answer from everyone.

I assume your daughter has had MRIs and EEGs?? Do they show abnormal brain activity?

kookaburra Rookie
kookaburra
Posted
Hi! I am new here to the forum, my daughter has been diagnosed with seizures (she's 5) and a kinesiologist we took her to reccommended we take her off gluten. She has a pediatric neurologist we take her to and she is taking topamax for seizures (her seizure symptom is upward eye rolling). We had her tested for gluten intolerance through bloodwork but it didn't show her to be intolerant according to the levels. I would love to know if anyone else has had a similar experience and also I live in Waverly, IA- I wondered if anyone knew of any good doctors or support groups? I would love to take her off gluten in hopes of seizure control but even the ped neurologist says going gluten free won't help, as it only helps kids with autism.

Thanks so much!

My son (4yo) had what were either seizures or severe migraines last spring. He has the classic symptoms of celiac, and when we took him off gluten the effect was remarkable. Beyond belief. We've tried a gluten challenge 2 more times with obvious results. Here is the kicker, though, his blood panel came up negative (he was already off gluten then so that's to be expected). But his gene test came up negative and I've been told by a few doctors that he absolutely can't have celiac. I wonder if there are any other diagnosis that could fit? Try the gluten challenge... if your experience becomes similar to ours, there is no mistaking the difference. I'd love to hear how your situation progresses as it is similar to ours...

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Juliet Newbie
Juliet
Posted

The gene test only indicates a predisposition to Celiac Disease. At least 1-2% of the people who have Celiac Disease do not have the HLA-DQ2 and HLA-DQ8 genes.

CarlaB Enthusiast
CarlaB
Posted
But his gene test came up negative and I've been told by a few doctors that he absolutely can't have celiac. I wonder if there are any other diagnosis that could fit?

I bet he has DQ1 genes that can cause gluten intolerance with neurological symptoms, and these people (me included) typically test negtive for celiac.

ptkds Community Regular
ptkds
Posted

I once watched a Mystery Diagnosis on the Discovery Health Channel about a little boy who had seizures. They weren't the grand mal kind, but he would gaze off into nothing and make a clicking noise w/ his tongue. Turns out he had Celiac disease and once he was on the gluten-free diet, he became seizure-free. I have it copied on a celiac disease. If you would like a copy of it, just let me know.

ptkds

  • 2 weeks later...
kookaburra Rookie
kookaburra
Posted
I bet he has DQ1 genes that can cause gluten intolerance with neurological symptoms, and these people (me included) typically test negtive for celiac.

That's interesting that you should say so, because he is actually a double DQ1. When I happened upon celiac as a potential diagnosis, I was actually excited (I hope that doesn't sound too terrible). But there is this family history of extreme IBS, and accompanying neurological stuff. I thought I had solved so many mysteries, why those relatives became so food intolerant, had malabsorption, etc. I hope in the years to come they will do more studies about gluten intolerance. They seem pretty slim so far.

I've been following your thread about lyme a bit. Same thing there -- chronic lyme is terribly understudied. Hope you are feeling ok these days.

  • 2 weeks later...
mamaloca2 Apprentice
mamaloca2
Posted
Hi! I am new here to the forum, my daughter has been diagnosed with seizures (she's 5) and a kinesiologist we took her to reccommended we take her off gluten. She has a pediatric neurologist we take her to and she is taking topamax for seizures (her seizure symptom is upward eye rolling). We had her tested for gluten intolerance through bloodwork but it didn't show her to be intolerant according to the levels. I would love to know if anyone else has had a similar experience and also I live in Waverly, IA- I wondered if anyone knew of any good doctors or support groups? I would love to take her off gluten in hopes of seizure control but even the ped neurologist says going gluten free won't help, as it only helps kids with autism.

Thanks so much!

I say why not give it a try and see if it helps? Going gluten free won't hurt, and is safer than some of those knarly meds!

CarlaB Enthusiast
CarlaB
Posted
I've been following your thread about lyme a bit. Same thing there -- chronic lyme is terribly understudied. Hope you are feeling ok these days.

Thanks for asking. Once a month I have a bad flare-up/herx because of the life cycle of the bacteria. In the beginning I couldn't tell a difference between the flare-up and just normal, now there is a distinct difference, so I guess that means I've seen a little improvement, at least between the flare-ups. This week is my flare-up week, so I'm mostly staying in bed. Thank goodness for laptops or I'd be without entertainment!

BTW, I'm double DQ1, too.

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