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Seizures And ?celiac

deelind

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deelind Newbie
deelind
Posted

My 2 year old has an abnormal eeg- frequent 1-2-sec spikes adn waves but no actual seizure activity- this was pre gluten-free. Lots of weird neuro type things (tics, weakened legs) that improved since gluten free but still seeing like a quick kind of tic/startle a few times per day- hasn't been acutally dx celiac- (-)bloodwork and too late for biopsy- gluten-free since 12/08- gastro 2/09- we are waiting for the genetic bw to come back; gastro said we should treat him like he has celiac- especially bc we have been seeing improvment. My f-i-l has celiac- which is why se suspect- also has ataxia which is still present but has improved on diet- also dev delayed and lwo muscle tone- didn't see stomach issues until he went gluten-free- then has had normal bm's since- prior always explosive and smelly but weight gain never an issue- also ate tremendous amounts of food starting to slow down- also has slight vit a nad e def started on prescitption vitamans from gastro

Anyway we are contemplating seizure meds to see if the ataxia and delays improve- may be caused by spikes- anyone else have anything similiar- how long did it take for neuro symtpoms to improve???

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sugarsue Enthusiast
sugarsue
Posted
My 2 year old has an abnormal eeg- frequent 1-2-sec spikes adn waves but no actual seizure activity- this was pre gluten-free. Lots of weird neuro type things (tics, weakened legs) that improved since gluten free but still seeing like a quick kind of tic/startle a few times per day- hasn't been acutally dx celiac- (-)bloodwork and too late for biopsy- gluten-free since 12/08- gastro 2/09- we are waiting for the genetic bw to come back; gastro said we should treat him like he has celiac- especially bc we have been seeing improvment. My f-i-l has celiac- which is why se suspect- also has ataxia which is still present but has improved on diet- also dev delayed and lwo muscle tone- didn't see stomach issues until he went gluten-free- then has had normal bm's since- prior always explosive and smelly but weight gain never an issue- also ate tremendous amounts of food starting to slow down- also has slight vit a nad e def started on prescitption vitamans from gastro

Anyway we are contemplating seizure meds to see if the ataxia and delays improve- may be caused by spikes- anyone else have anything similiar- how long did it take for neuro symtpoms to improve???

Hi, My dd (6) has seizures but our experience probably won't be helpful since it's not directly related. She is on 2 types of meds and has been seizure free for almost 1 year. It took us almost a year before we found the right combination of meds that worked for her. Her Neuro believes her seizures may be gluten related but we have not made any changes to the meds yet. Since going gluten free 6 months ago, she has shown improvement in many areas including her behavior, body strength, she is more verbal and has started catching up with her learning at school. Anyway, good luck.

deelind Newbie
deelind
Posted
  • Author
Hi, My dd (6) has seizures but our experience probably won't be helpful since it's not directly related. She is on 2 types of meds and has been seizure free for almost 1 year. It took us almost a year before we found the right combination of meds that worked for her. Her Neuro believes her seizures may be gluten related but we have not made any changes to the meds yet. Since going gluten free 6 months ago, she has shown improvement in many areas including her behavior, body strength, she is more verbal and has started catching up with her learning at school. Anyway, good luck.

Has she had any side effects the the medications- what were her delays like priot to gluten-free- is she dx celiac or just gluten intoerant and how??

Thanks

sugarsue Enthusiast
sugarsue
Posted
Has she had any side effects the the medications- what were her delays like priot to gluten-free- is she dx celiac or just gluten intoerant and how??

Thanks

She is diagnosed non-celiac gluten intolerant by blood test last year (age 6). I did not do a biopsy on her, I don't believe it would have been positive at her stage anyway so I will always wonder.... But she is so sensitive to gluten that I have to be very careful of cross contamination or she is affected.

I started seeing her seizures at age 3 but didn't realize what they were until age 4.5 or so. She has sensory processing disorder, diagnosed at age 3. She could not sleep, could not settle down, could not self calm, did not have energy to walk, would not play because of low muscle tone. She also went through periods where she would not speak much. She was very impulsive and would grab onto you and not let go, pick at your clothes or grab my (and sometimes other women's) breasts. She was not learning to read in what they would call "normal" timeframe due to her intelligence in other areas.

With the seizure medications, they either would not supress her seizures or she would react poorly. Like she could not stay awake or would be too agressive and more impulsive or she would have more seizures. It's hard for me to remember it all now but that is the basics. We went through so many medications. Finally her neuro put her in the hospital for a 48 hour video EEG. That allowed him to learn more about her seizures and we finally found the right mix (depakote, 4 sprinkles a day and 2 3.75 mg Tranxene a day).

Between stopping the seizures and going gluten free, she is doing so much better. She is growing, her teeth are falling out (in a good way), her hair is growing, she speaks much more, has more energy, has learned to read, is a role model for other children in her class. She still has some trouble controlling herself, keeping her hands to herself but it is much better. She speaks in a loud voice much of the time (she's super loud with no volume control).

Anyway, I hope some of our story is helpful to you.

DingoGirl Enthusiast
DingoGirl
Posted

Just a couple of days ago, I got an email about celiac and idopathic epilepsy written by this guy, a wonderful veterinarian who is Celiac himself. Check out these articles, lots of good info here, I have only just begun reading all of it! ( I don't have any seizure-type activity myself but have had my brain very much affected by Celiac):

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