[neurogirlfriend]

My name is Cara and I am here because my boyfriend Ben has a neurological condition that no doctor can figure out. He has epilepsy, and has had 3 grande mal seizures before, but he also has "seizure like activity" on a regular basis. This means he twitches with tremors ranging from moderate to severe, and his eyes can flutter or roll back but he is conscious.

Several years ago, after a battery of doctors, tests, and medications that almost killed him without ever helping him, Ben finally went to a naturopath and was told he should not eat wheat and should avoid white potatoes. Since he put these restrictions into place he has been able to resume a fairly functional lifestyle. His Seizure Like Activity (SLA) may happen for a week at a time, but he has weeks without any tremors at all. Before he changed his diet, Ben was not functional and had to live with his parents. He was in his late 20's then and is now 33.

Because all of this counts as a preexisting condition, he can't get health insurance to cover further attempts at diagnosis. I constantly tell him he needs to look into it more, for the sake of our future since we don't know if this is degenerative or what, but my argument breaks down when he asks what I have in mind that he hasn't already tried. I wish there was a real life "Dr. House" who specialized in Neurology and practiced for free.

[pabb]

Originally Posted by neurogirlfriend

My name is Cara and I am here because my boyfriend Ben has a neurological condition that no doctor can figure out. He has epilepsy, and has had 3 grande mal seizures before, but he also has "seizure like activity" on a regular basis. This means he twitches with tremors ranging from moderate to severe, and his eyes can flutter or roll back but he is conscious.

Several years ago, after a battery of doctors, tests, and medications that almost killed him without ever helping him, Ben finally went to a naturopath and was told he should not eat wheat and should avoid white potatoes. Since he put these restrictions into place he has been able to resume a fairly functional lifestyle. His Seizure Like Activity (SLA) may happen for a week at a time, but he has weeks without any tremors at all. Before he changed his diet, Ben was not functional and had to live with his parents. He was in his late 20's then and is now 33.

Because all of this counts as a preexisting condition, he can't get health insurance to cover further attempts at diagnosis. I constantly tell him he needs to look into it more, for the sake of our future since we don't know if this is degenerative or what, but my argument breaks down when he asks what I have in mind that he hasn't already tried. I wish there was a real life "Dr. House" who specialized in Neurology and practiced for free.

please visit the gluten sensitivity / celiac forum, just scroll down the page till you find it......gluten is known to cause seizures in sensitive persons
the gluten free diet takes some practice...it could be that he hasnt been thorough enough, especially because it includes barley and rye as well...good luck

[neurogirlfriend]

Originally Posted by pabb

please visit the gluten sensitivity / celiac forum, just scroll down the page till you find it......gluten is known to cause seizures in sensitive persons
the gluten free diet takes some practice...it could be that he hasnt been thorough enough, especially because it includes barley and rye as well...good luck

Thanks for the heads up about the celiacs thread, I will certainly check it out. I want to make it clear, though, that ben does NOT have celiacs disease...it was ruled out. He is extroardinarily vigilant about avoiding all food with even a hint of gluten, and yet he still has these seizure like symptoms quite often. I'm not saying there is no relationship between his diet and the symptoms, as we know that gluten does make it worse, but there is obviously a broader cause or else he would not have seizure like activity since he strictly avoids all foods containing any amount of gluten.

[pabb]

Originally Posted by neurogirlfriend

Thanks for the heads up about the celiacs thread, I will certainly check it out. I want to make it clear, though, that ben does NOT have celiacs disease...it was ruled out. He is extroardinarily vigilant about avoiding all food with even a hint of gluten, and yet he still has these seizure like symptoms quite often. I'm not saying there is no relationship between his diet and the symptoms, as we know that gluten does make it worse, but there is obviously a broader cause or else he would not have seizure like activity since he strictly avoids all foods containing any amount of gluten.

ah, by ruled out i presume you mean the blood tests were neg? not always accurate, and about 20% of biopsy proven celiacs are blood test neg......also blood tests are not going to dx gluten sensitivity....check out enterolab.....gluten is in so many processed food.....unless he is eating paleo....would be very hard to be totally free......also check grooming and cleaning products....pet food....your grooming products etc....

[jccgf]

You can definitely have gluten sensitivity causing seizures without testing positive for celiac disease. Half of those with gluten sensivity and/or celiac disease also have cow's milk sensitivity. Has he tried giving up cow's milk? Soy? msg and aspartame? These seem to be the biggest troublesome foods when it comes to seizures,although any food can do it depending upon the individual.

Also, has he tried vitamins, in particular B vitamins?

My daughter with seizures tested positive for pyroluria, a condition associated with seizures, gluten/casein sensitivity, and other symptoms. The treatment is primarily b6 and zinc, and her seizures and other symptoms improved greatly with these vitamins. This test can be self ordered...was around $60 when I ordered it years ago.
http://jccglutenfree.googlepages.com/pyroluria
http://www.nutritional-healing.com.a...ding=Pyroluria

I have known many people who have decreased or eliminated their seizures through dietary restriction and/or vitamins. The formula that works for one many be different that what works for another. Of course, not all seizures are caused by food sensitivity or nutritional deficiency, but the fact that he improved on a gluten free diet suggests it may be a factor in his. When there is food sensitivity there is often unrecognized nutritional deficiency.

Here is some info on gluten and seizures~
http://jccglutenfree.googlepages.com/seizuresepilepsy

Cara