NeuroTalk Support Groups - View Single Post - How many have tried GFCF diets for epilepsy?

southie · 05-07-2011, 11:01 PM

Quote:

Originally Posted by CallieGirl

I have Juvenile Myoclonic Epilepsy which I have had for 11 years, since I was 17. The teen years is usually when JME starts (hence the "Juvenile". Throughout the years I have learned my triggers. By far the biggest, main trigger for people with JME is sleep. I have to get lots of sleep and I can't get up early. (You may think that sounds great but I actually miss out on a lot!) Another trigger for me is my menstrual cycle -- when I ovulate and especially when my period is at it's heaviest I have more seizure activity. (Sorry for TMI!) I don't have grand mal seizures very often since I am on medication, but I have "jerks" -- muscle spasms in the arms that if I don't control my triggers I eventually have a grand mal.

Two years ago I radically switched up my diet to avoid the severe constipation I experienced. My jerking immediately got a lot worse. Through much Internet research (Dr. J and others) I discovered the connection of epilepsy and food. What I had done was starting eating whole wheat and whole grains. Previously I had only eaten white flour and very occasional whole grains.[/B][/B] I switched back to eating white flour, in moderate amounts and added more fruits & veggies, to avoid constipation.

I had also completely cut out cheese to avoid constipation, a food that I had eaten a lot of very regularly previously. Unfortunately when I slowly started to add back things in small amounts like cheese, I discovered I couldn't tolerate it -- my head felt very strange, and I would jerk worse the next morning or even shortly after eating. I also experienced panicky feelings after eating foods like whole wheat.

I recommend to anybody planning to switch their diet radically to instead do it gradually. Also expect that you may never be able to go back to your old way of eating. Don't let that scare you though if it helps your seizures.

I am still learning every day what I can and can't eat. Besides my epilepsy, I also have to think of constipation, and my interstitial cystitis, and just health in general such as my weight. I often get discouraged because it doesn't seem there is anything I can eat. I like variety, and there is only so and so many potatoes and eggs I can eat a day...a week...a month!

This is what I have discovered personally myself, through Dr. J, other websites, and trial and error (I haven't even bothered mentioning this to my md or neuro) :

-absolutely NO whole wheat
-absolutely NO Parmesan cheese
-absolutely NO soy

I avoid the above 3 like the plague, and soy seems to be in everything!! I have become an obsessive label-reader!

I also quite strictly limit :
-white flour
-any grains
-any cheese
-seeds, beans, nuts
-sugar

I have always hated artificial sweeteners, so it hasn't been too hard for me to avoid that one, too! Yuck, it makes me feel awful & tastes horrible!

I have never had a problem with corn, rice, dairy in limited quantities, chicken, eggs, most meats (I've never eaten much meat anyway), and veggies. Fruits I try to eat the ones with the lowest amounts of sugar.

That's my own personal experience. Anybody else out there who has JME or have children who do?

With that implied above; I just cannot help but wonder if you
had been tested for lactose intolerance and also for
thyroid?

Yes, you can have Epilepsy and also have problems with
being lactose intolerant and/or having thyroid problems,
until you had been tested and retested on two separate
incidents for confirmation. It is possible that you could also
have another medical condition which can provoke seizures.

My son is Dx'd (diagnosed and confirmed) with Epilepsy and
he has BOTH lactose and hyperthyroidism; while his body
rejects the Synthyroid (medication to treat the thyroid); it is
due to the fact he is a carrier of what I have - mitochondrial
after further testing. As for anything lactose related - he had
to withdraw from it for several months and be reintroduce it
gradually but in very small portions.

He battles with this, like a severe alcoholic going through
cravings for a bottle; he gets this wild cravings for example,
milk - and would down an entire gallon of milk all by himself
and have the urge for more, and if there's another gallon of
milk in there, he would down that too - or anything that has
lactose such as cheese, and so on - he will eat it up like a
wino that had been given the key to drink up everything in
the liquor store! Once started, that wino won't stop until he's
passed out ... not to mention a huge mess he's made too!

However, with my son, there's a tremendous price to pay
for what he had did and done - he gets sick, suffers greatly,
and does seize. *sigh* Hence, why one must not stock up
with lactose items in the household except the bare minimal
so when he gets the cravings, when it's gone, it's gone. At
least it won't get himself into a dire situation; but the possibility
of him getting sick is a coin toss, depends on what all he ate
and drank.

While he is a mirror image of his mother (me), he has a lot which
now scares him, including cardiac and other things - but I do not
have lactose or thyroid problems, that part is unknown as where
that came from but something about the genetic link is missing.
Then again this is mitochondrial ...

He is trying to get his Doctor to have him go to a Neurologist and
to my Cardio-Surgeon as his Cardiologist is recommending it, he
is also pushing for Folic Acid as I am on it.

It is hard to imply or say anything yet - because they are talking
about having a possibility of having BOTH of us on VEEG together
in the same room on the Digital Montage Unit (they are going to
move one to one room) so they can watch the EEG's in comparison
with each other together including monitoring on video as well.
I know I am on an E-Free trip, but they are just talking at this
point. Connecting the two and two together is what they are
looking for; for we are so much alike in a lot of ways and differing
in other ways - through this, they will be able to see if all because
of the pattern he is following just after his mother (based on the
historical records).

This will also give a better viewpoint and a solid ground for his
child and my grandchild - an establishment; which they are keeping
a close eye on the grand child.