Gluten Poisoning

[gigantor98]

Can anyone tell me what happens when you have been off of gluten for awhile and than by accident you get gluten? I have been experiencing seizures at ovulation time once a month prior to the diagnoses of Celiacs. Doc. says this is why I am having my seizures. I was told once I get on this diet and have been on it for awhile I should be able to get off my seizure meds. The seizures are triggered by ovulation and a migrain. I am affraid that once they take me off my meds and I get gluten poisoning I will go in to a seizure instead of the intestinal problems that I keep reading about. I did not have intestinal problems, that I knew of, as a symptom of celiac disease. I had the neurological symptoms. Can anyone give me an answer I am very new at this I have been off of gluten for only a week.

Thanks.

[ravenwoodglass]

Welcome to the board and the gluten free lifestyle. There is a lot to learn and if you have any questions at all don't be afraid to ask. You found a great place for info and support.

Your seizures may very well resolve. Try not to worry. The doctors will be monitoring your medication and will taper you off of it. If your seizure activity is not controlled they will change the dose.

I also have neurological issues from gluten and in my case I never had a migraine after I went gluten free or any more seizure type activity. I can't say the same will hold for you but I would be hopeful if I were you. I have been gluten free for over 6 years now but like all of us I have been glutened a few times, particularly in the beginning before I found this site. I do still get an increase in ataxia when I get glutened but the seizures and migraines have never reappeared. One thing that helps a lot with healing the nerves and brain is sublingual B12, gluten free of course. Make sure you get the sublingual and do let you doctors know you take it as it will affect the blood test for B12 levels.

[gigantor98]

Thank you so much for your response. You are right this has been a good place for info. I am as lost as a goose but I think that I will be able to find my may with the help of this web site. I am trying not to worry b/c I have never had a seizure before until this June. I thought I was going to die. My father had picked me up from my home infront of my 3 kids ages 7,5,&2.

As you can figure they where terrified. I could not comfort them. On the way to the hospital my hands drew in like a stroke victim and so did my month. I was trying to talk but was hard b/c everything was so tight. I had a terrible headache and my vision was blurry. When the got me into the er they wrote it off as a panic attack when they could not find anything else. I was severly drained. It was like I was unplugged.

The next day my family Doc. called me to come in first thing and he sent me to another hospital for observation for a few days. I was so tired and dizzy this day. I stayed that whole day in the hospital only to have another attack the next day with the same symptoms. My husband had witness this one and could not believe his eyes. The look on his face is something I will never forget. Not only did I think I bit the farm he thought so too.

Anyway, I finaly got neuro tests done but they came back fine and of coarse the EEG never showed seizure b/c this was after the fact. So they said I was stressed and sent me home with a bag full of nerve pills. These things only made me depressed. I was not stressed or depressed before until I took those things. My family doc. could see that these pills was not working for me so he sent me for some more test.

I started keeping a journal and recording when these attacks where happening and the only thing I was coming up with was ovulation time. Well I have had the million dollar work up b/c they found out we have good insurance and I have had the spinal tap to only have the spinal headache that came with it. This was what broke the staw on the camel's back. At that point I did not care to ever see another doc. for as long as I lived. I was just going to put up with this craziness once and month and be down for the 24 hours that it caused me to be down for and go on. I tried to research my sypmtoms online but I could not find anything but catamenial epilpsy and that was the only thing at the time that made since.

I was refered to Vanderbelt Hospital in Nashville for them to tell me that is what I was having was seizures during ovulation triggered by the migraine activity. But inbetween time I was refer to an endo-doc. who stated that I might have celiac disease. Of course I had no idea what he was talking about.

I have been on this seizure meds since Aug and it lessens the severity of the seizure but I know when I am having one. I was told by Vanderbelt also that since my endo doc. caught this than I should be fine and seizure free. I am praying so b/c these seizures are so debilitating.

Prior to the meds on a pain scale of 1-10 it would register a 15 and I could not even get up to go to the bathroom in that 24 hour period. I would end up having 2 seizures in a 24 hour period. After the 24 hours where up than I was back to normal, like it had never happened.

After being on the meds. the pain scale is a 7 to 8 and after 24 hours I am back to normal. I can function some during this time where as before I could not. But don't ask me to drive, read a book, or vote b/c I can not focus on this task. One of my seizures was during the election and I of course messed up my ballot on the account of having to focus and I just could not. I finally got the second ballot correct, now I may not have pick the right people but at least I filled in the dots well.

I am just afraid of being caught off guard and this happens while I am out with my kids. They have been through enough this summer and my 7 year will not leave my side now for anything. I don't want to put them through anymore trama but I will have to get them tested in the all to soon future.

Sorry for being so long, this helps getting this out b/c this is the scariest thing I have ever went through physically. Up til June I thought of myself as being pretty healthy, but this past summer has made me questioned my health and my health care providers.