Seizures?

[Jeffiner]

I am 40 years old. I was sick for many years before it was discovered that gluten was the culprit. I had a huge list of symptoms, some of them seemed neurological. Since I have gone gluten free, I am much better. I do get gluten once in a while though by accident and I feel it. A couple of months ago, I started having spells of lightheadedness and feeling faint. The right side of my face will go numb and my right arm and leg feel heavy. Sometimes I get a headache too. This past week I have had an ultrasound of my heart, neck, and wore a holter monitor for a day. I am assuming that all was well for the results. I never heard anything. I have an appointment with the doctor monday. The fear was that I was having mini strokes. I found some information about gluten and people that are intolerant having seizures in connection to the intolerance. Some of it sounds the way that I feel during these episodes.

Please share any knowledge or experience that you have about this possibility. Thank you.

[GlutenFreeManna]

Hi, I had unexplained seizures when I was on gluten. I have not had one since going gluten free (18 months now). I experienced much of what you are describing. In addition to the seizures I had tingling in my hands, pain going down my left arm, racing heart beat with chest pain, muscle paina nd muscle weakness, black outs of memory accompanying the seizures, short term memory loss and many more symptoms. I had the halter monitor test, ecocardiogram, a sleep study testing me for epilepsy, narcolepsy, and sleep apnea. I had an MRI of my entire spine and scans of my brain. I was tested for lupus, MS and all kinds of other things. Everything came back normal except that I had a positive ANA test and I was anemic. No doctor ever thought to test me for Celiac disease. I had my gall bladder out about a year before I started getting really sick with all the neurological stuff. I never had the GI symptoms really bad but I had some that I always attributed to my gallbladder. I also have hypoglycemia. Even being gluten free now I have to eat something about every 3 hours or I get light headed. I also have to watch my intake of carbs and sugar. Too many carby snacks and I will be sluggish and lightheaded the rest of the day. I have to balance it out with protein.

So that's my history in a nutshell. Unfortunately I can't tell you "yes gluten is causing your seizures". I have only seen maybe one or two other people on this board that had that as a symptom. I think it is very rare and there are so many other things that need to be ruled out first. Let the doctors do all the other testing just to make sure your brain and heart are working fine. It's not fun and it's expensive even with insurance (we had about $20,000 in medical bills in the two years I underwent all this testing and that was WITH insurance) but with there being lots of serious causes of seizures you need to have the big things that can be fatal (like mini strokes) ruled out before you can conclude it's gluten.

[txplowgirl]

I don't have any experience with seizures but I have a cousin who has had seizures, Lupus and migraines since she was 10 years old. She is now 55. I talked her into going gluten free a year ago, because she has always had a milk intolerance as well as other food intolerances. She has always told me that she knows when her seizures are fixing to happen because her face and tongue starts tingling and her fingers go numb.

She called me a couple of weeks ago to tell me that her lupus has gone into remission. First time that has ever happened in all these years, She has not had a migraine in 6 months and she has not had a seizure in 3 months. She had seizures every single day, sometimes as many as 3 a day since the age of 10.

[Jeffiner]

Thank you ladies for the replies.