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Dedrasmom

Seizures (epilepsy) & Celiac

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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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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.


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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