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Seizures (epilepsy) & Celiac

Dedrasmom

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Dedrasmom Rookie
Dedrasmom
Posted

Hi everyone. My sweet hubby has celiac which was diagnosed 1 1/2 yrs. ago. I found this site back then and read some posts about people who had seizures as a result of celiac. There never seems to be much said about that here. I assume it is fairly rare. I would love to correspond with anyone else who has or had seizures as a result of eating gluten. My husband had no other symptoms (except failure to thrive as a baby) He wasn't diagnosed until he was 52 and became anemic and had some strange passing out episodes. My husband has not had a seizure in well over a year and we are so thrilled. We are hoping that he will be able to come off his meds one of these days although that is a scary prospect. Just the fear that he will start having seizures again. The damage may be too severe.

One bad thing is, since he doesn't get stomach upset it is hard to know if he accidentally gets glutened. It's also hard to make him be extra careful.

Anyone else with seizure related Celiac?? Love to hear from you or to receive any links to info on the subject.

Belinda in NC

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marciab Enthusiast
marciab
Posted

Belinda,

I get nocturnal myoclonus everytime I went into REM sleep from gluten as well as a host of other neuro symptoms. I went off my Klonopin veeery slowly.

Have you asked his doctor about this ? I didn't have my docs permission to eliminate it totally, but she thought CFS/FM was an anxiety disorder ... HA !

I simply cut back on a tiny piece of Klonopin as I was comfortable with it. And if I had a rough nite, I went right back up to the original dose. It took me 4 months to wean myself completely. And then I took Valerian root tea at nite for a couple more months.

I'd had myoclonus for 16 years by then so it was hard to learn not to expect it.

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