My Personal N=1

[AlohaBird]

The most obvious sign of a problem would be GI issues, perhaps similar to what you have with the nightshades: diarrhea, gas, bloating. But some less obvious symptoms can occur as well as or even in absence of the GI ones, such as headaches, migraines, neuropathy (numbness and tingling in hands and feet, for example) and joint pain. Since you seem to react to large quantities of gluten but not small ones, perhaps what you have is non-celiac gluten sensitivity. Did you doc suggest this at all?
Since my brother also has the gene but no symptoms, he was told to get the blood test for celiac every 3 years even if he has no symptoms (and sooner if he does), since it is best to catch the condition early and minimize all the potential health ramifications of eating gluten when one shouldn't be eating it.

Dr Symes recommends something called the Sage ELISA Test. (www.foodallergytest.com). He said that allergy tests don't always find food sensitivities. Someone can be full blown celiac and yet test negative on an Ig1 test. Evidently this Sage ELISA test is a blood test that is more accurate.

 

[lindsayschu2]

No--I'll try the parsnips! My potato substitute for most things has been jicama, but I doubt it would work as fries. Thanks for the tip! Potatoes are toxic when they are sprouted and are starting to have a green caste to them too, even when you cook them. Not lethal toxic, but have higher levels of alkaloids that can effect anyone. I used to just cut off the sprouts and cook them anyway--I remember having a major series of complex partials after eating a bunch of potatoes I cooked this way. I wonder if others might see a pattern with potatoes if they watched for it--I've seen more written about being potato cautious these days, but maybe it's just because I realized my own issue and quit eating them so notice it more.

 

[Nakamova]

I think the skins of potatoes contain the majority of those pesky alkaloids. But if you are nightshade-sensitive, even the peeled ones will cause trouble. I wonder if different potato varieties are more or less toxic (probably not an experiment you want to conduct). Sweet potato fries are delicious alternative to regular fries too...

 

[lindsayschu2]

Anyone tried butternut squash fries? I think I heard someone mention those somewhere. . . I'm not a huge fan of sweet potato fries, but maybe I'll go on a 'fry alternative' binge this weekend and see what happens!! Hey Jen--you may be onto something with gluten. I noticed something yesterday . .. I'm going to keep watching and see what happens. Aloha--how's the reduction going today?

 

[AlohaBird]

Dr Symes' theory about allergies is that what he calls "the big four", gluten grains, corn, soy, and cow dairy, cause the majority of the problems by gumming up and damaging the villi in the small intestine. This leads to nutrient mal-absorbtion which leads the body to go into "leaky gut" mode, basically relaxing the permeability of the gut in order to try to get some nutrients. This plan B however comes at a cost. As the gut becomes more permeable, the stuff that should stay inside your gut (partially digested food) leaks out into the body in a way that it does not recognize as food. It see these leaks as foreign invaders and sets off the alarm systems of inflammation and hits the "reject" button which gives you all the GI distress.

Through this leaky gut, things other than the big four can become allergens. Your body comes to recognize them as bad guys.

The hopeful thing about this scenario is that if you completely abstain from the big four and close up your leaky gut, then the secondary allergens should stop being a problem.

I wonder if AEDs that cause nutrient mal-absorbtion could cause the body to react with a leaky gut all by themselves. Hmmm.

 

[AlohaBird]

No jicama doesn't make good fries. Not sure about butternut squash. I usually make soup out of that. It might get a bit mushy.

Nak is right about potato skins particularly the tough russet kind. I never could understand the bar food fad of potato skins. I guess they were just a delivery device for all the gooey cheese and bacon bits.

 

[AlohaBird]

Day 6 of 50% off the pheno and doing great. I've been sleeping great, some really long stretches too like 10 hours or so. I'm just going to go with it since I don't have to get up early for anything. It feels like my body is making up for cumulative sleep deprivation.

I forgot to add that I bought these all natural sleep aid pills from the Gaia company. They have good products that are all organic with no fillers and such. These capsules are a mix of passionflower, valerian, skullcap, kava kava, and California poppy.

So right now I'm not sure how much of my better sleep is coming from what factors.

Things contributing are these:
the Gaia pills
the Delta Wave CDs
my healer guy's magic hands
getting more regular exercise
getting really strict about my diet (e.g. no booze, coffee, no sugar, no excuses, no "special occasions")
getting the dairy out (I feel like I can breath better without it)

So, this is not a very scientific study, but it's working for me.

 

[AlohaBird]

I remember having a major series of complex partials after eating a bunch of potatoes I cooked this way. I wonder if others might see a pattern with potatoes if they watched for it.

My seizures definitely subsided when i went paleo which included cutting out the taters but I was thinking of it in terms of going low carb then so I wasn't really watching potatoes specifically.

The more I think about it the more I think Dr. Symes may be right that low carb eating works but not for the reason people think it works (ketosis). It may be about a ketogenic diet cutting out all the toxic foods and the ketones are just a side effect.
The pages Bernard has about the Keto Diet, the MAD, and the Glycemic Index diet all seem to bear this out. Even at lower levels of keto-intensity and even when people slip out of ketosis entirely, the neurological benefits remain.

In my current situation, I'm probably taking in a fair amount of carbs just from all this lovely tropical fruit. In my keto days I would have turned it down. But, even without restricting my carb grams, I'm still losing weight. people have been commenting on it. I'm not watching the scale either and I think this feels healthy mentally. I'm just watching jeans get too big and ones that didn't fit can now button with ease.

I don't think your body wants to be fat as long as it is convinced that there is adequate nutrition to be had, the hunting and gathering is good. Carrying extra fat is a survival adaptation for lean times. I think that the crazy craving you get for chips or whatever are really your body trying to tell you that on a nutrient level, it is starving, overfed perhaps but under nourished. Your body doesn't know how to tell you, I need 10 grams of selenium please. It just says, keep looking, keep foraging, the nutrient we need may be on that next hedge.

I have been finding that since I started supplementing with moringa and noni and Cnut water and such, I don't get "the munchies" at night after dinner.

 

[Blonde Angel]

Its great to read you are very proactive in looking into other aspects besides conventional drug theraphy. We sort of get bombarded by medications and I can understand when people think enough is enough.. but theres also a need for realism and not putting ones safety at risk.. I do a mix of conventional medications and follow good nutrition for irritable bowel.. there's a connection between gut issues and Autism but not all people with Autism have bowel issues... I have managed to eliminate foods that literally give my Daughter the poo poo..



Its obvious you have spent time in researching and not being too extreme or silly because there can be rorts out there when it comes to alternative things..
Just remember, its a learning process, what works for one, may not work for another person, but you can only try and decide.

All the best Aloha.

That's been my motto.
x

 

[AlohaBird]

Oh yeah, there is all kinds of alternative "Woo-Sci" out there. I ran across one website with this guy selling something called MMS or Miracle Mineral Supplement. When you dig a bit deeper into the actual ingredients however, guess what he is hawking. Pool disinfectant. Yup. Claims it will cure everything from cancer to toenail fungus. And the fact that it will make you puke? Well, that is just a "detox reaction".

As far as putting my safety at risk, like i said the worst that could happen in my case is that I would have a seizure at night in bed and feel like crap the next day. If I were risking having a seizure behind the wheel then that would be a different cost/benefit analysis.

I don't really know how far I will be able to push the meds back but things look really promising at this point. I feel like I can hear my liver breathing a sigh of relief at having half the phenobarbitol to process out.

Does you daughter's IBS diet cut out gluten?

 

[Blonde Angel]

I am not too strict with the gluten, but don't give white breads, I am lactose intolerant & have found she is the same so we both have soy milk or lactose free ..very expensive but we don't end up with abdo pains & cramping.

She is fortunately not a fussy eater & she hardly has any junk..ocassional treats.
I do find that kids behaviors do go nuts with junk...

 

[AlohaBird]

Coconut milk is another good substitute that does not involve the phyto-estrogens that are in soy. Delicious too.

Dr. Symes GARD protocol says that it is not about if you are lactose intolerant or not. It is the other part of dairy, the casein protein molecules that are super high in glutamate. But people who are sensitive to the lactose are more likely to be sensitive to the casein too. I wonder if that could be your daughter's issue?

Soy is super high in glutamate too. Glutamate is what is in MSG that is a known seizure and migraine trigger. So subbing soy milk for cow milk is kind of frying pan to fire.

The brand of coconut milk I use is called Aroy-D and it comes from Thailand so you would probably have it in asian stores where you are. It's the only one I've found that doesn't have a whole bunch of added thickeners, gums, stabilizer, preservatives, etc. One ingredient :coconuts.

It's good that she stays away from the packaged junk foods. That stuff is full of both aspartame and glutamate often under sneaky labels such as "natural flavorings".

 

[AlohaBird]

Well last night was kind of weird. I woke up just as the sun was coming up and felt totally confused, almost post-ictal. I checked my tongue and that wasn't it. I still had my earbuds in with the Delta Wave CDs playing and the minute I took those out I felt fine. I think perhaps they work best when you get to bed at a reasonable hour instead of staying up until 2am watching Scorpion. It seemed like the deep sleep delta waves were just wrong somehow with the light of day coming in. Just didn't fit.

I had dinner out last night, a charity event for the local community arts center so the cooking was out of my hands. It was a soup and salad plus bread dinner and you got to pick out your own bowl from the ones made by local ceramic artists and then you get to keep the bowl. They call the event the Soup 'r' Bowl which is pretty clever.

So I obviously didn't eat any of the breadsticks but the soups may have had dairy and even some flour thickening ingredients and the salad dressing was commercial generic "Italian" so probably not an oil that I would be using.

But it was nice to get out and socialize and there was musical entertainment and hula dancing (I want to learn how to do that).

I stayed up too late and woke up feeling discombobulated as I said but managed to get enough sleep eventually. I'm sure now that I didn't have a seizure because I don't have any of the morning after brain fog or sore muscles.

So I'm going to chalk that up to experience and be more careful about my food and try to get to sleep earlier. If you see me posting here later than 10:30 feel free to wag a virtual finger at me.

I'm going to see my healer guy again tomorrow. I always sleep really well after a session with him.

 

[Blonde Angel]

Thanx for letting me know about the soy milk I do think my Daughter does get ocassional migraines & if she's stressed by this can lead to seizure activity.

I'll look into it & see how it goes with no soy milk.

 

[lindsayschu2]

Maybe you had partial seizures without having a tonic (or maybe you are just tired ) If that's the case, the soup may have been your culprit. I avoid soups out--so many of them have glutamate in any of it's obvious and not so obvious forms, like MSG, hydolyzed soy protein, autolyzed yeast extract, many others--all have glutamate. Even when the soup is made homemade they often add in bouillion or some kind of soup base additive, and every last one of them has MSG (I've looked for broth or bouillion at the store without and they all have it). Same thing with commercial salad dressings--they tend to have some kind of flavorings that have glutamates in them. Maybe you aren't sensitive to glutamates, but some are. It's hard to eat out but it's equally hard to never eat out!

 

[AlohaBird]

Thanx for letting me know about the soy milk I do think my Daughter does get ocassional migraines & if she's stressed by this can lead to seizure activity.

I'll look into it & see how it goes with no soy milk.

Good. I hope that helps. There is a a lot of interesting info on Dr. Symes' site , dogtorj.com , about food sensitivities.

 

[AlohaBird]

Maybe you had partial seizures without having a tonic (or maybe you are just tired ) If that's the case, the soup may have been your culprit. I avoid soups out--so many of them have glutamate in any of it's obvious and not so obvious forms, like MSG, hydolyzed soy protein, autolyzed yeast extract, many others--all have glutamate. Even when the soup is made homemade they often add in bouillion or some kind of soup base additive, and every last one of them has MSG (I've looked for broth or bouillion at the store without and they all have it). Same thing with commercial salad dressings--they tend to have some kind of flavorings that have glutamates in them. Maybe you aren't sensitive to glutamates, but some are. It's hard to eat out but it's equally hard to never eat out!

Oh yeah, there are glutamates is everything store bought. These were "homemade" soups but you are right about bullion. If you aren't willing to wait for bone broth to cook and make soup stock, bullion is the easy way.

I am definitely sensitive to MSG. I have known that for ages because I always get a migraine after cheap Chinese takeout.

Last night, or rather early this morning, I did have a partial. When they start in one area, for me it is always the left arm, and I can grab ahold of that arm with my other hand I can make it stop before it goes full blown. I read about it in a book and it is really amazingly effective. The seizure just shuts off like the plug was pulled on it. No after effects of mush brains or anything.

I've been inside for several days in a row now due to rainy windy weather. The sun finally came out today so I am going to go grab some of that vitamin D.

 

[AlohaBird]

Someone was asking if alcohol could induce seizures on another thread this morning and this is what I answered:

In my wild impetuous youth when I first started having seizures and was generally pissed off at the world and scared to go to sleep (nocturnal seizures), I did a lot of "self-medicating" with both booze and drugs.
It didn't work. I was having two or three seizures in a night and three or four nights like that a week. I was a mess.
Then I got into body building. Cleaned up my diet and stopped all recreational substances and lo and behold, my seizure dropped to about once a month.
All of this was without any pharmaceutical meds in the picture.

This made me think back on that time period and reminded me of what a difference diet and lifestyle factors can make.

When I look back on my diet of that time it was a lot of fresh veggies, fruit, and seafood. Plus I was exercising regularly and getting lots of sunshine (getting tan for bodybuilding shows. Yeah I did a few of those :blush.

But my diet also included things that I thought were healthy at the time like lots of soy, whole grains, nonfat dairy, etc.

Had I known then what I know now, I wonder if I could have tamed the epilepsy entirely without resorting to pharmaceuticals and getting dependent on them. Hmmm.

 

[AlohaBird]

Phenobarbital's half-life is 53 to 118 hours. Roughly speaking, it would take 10 to 20 days days for it to leave your system altogether. A standard taper for someone who has been taking it for several years would be 2 to 3 months -- or longer. I recommend going super-slow -- it just makes it easier for the brain to adjust and recalibrate. And because Phenobarbital has an effect on REM sleep, a slow taper can help minimize the risk for sleep-related withdrawal side effects like insomnia or nightmares.

Depakote's half-life is 9 to 16 hours. It would be out of your system in 2 to 3 days. One suggested conservative withdrawal rate would be no faster than 250–500mg a day every five to seven days.

HOWEVER: Depakote can increase serum Phenobarbital levels (thereby slowing it's half-life). This means that if you were to taper off both meds at once, or only go off of the Depakote, your Phenobarb levels could drop more quickly than you might otherwise expect.

Pondering Nak's sage advice some more.........
Given the one partial and the one night of not sleeping well I had last week, I decided to concentrate just on the pheno for now. I had taken my depakote down by 25% several months ago but now it seems like that may have been a mistake. If I can get the pheno all the way out of my system first , then I can tell what is going on better with out this cross reaction. I think this interaction is confusing my neurons.
So the past two nights I have taken the full Rx of depakote with the 1/2 Rx of pheno and have slept great.

 

[AlohaBird]

We have been having some sucky weather the past few days. I know those of you under several feet of snow think I'm a real whiner to be complaining about a little rain and wind. It finally cleared up today so the pooch and I got out for a nice five mile walk. It ended up only being a four mile walk because my neighbor stopped and insisted on giving me a ride and I didn't want to be unfriendly. I was also carrying a bunch of packages I had picked up at the post office and was feeling a bit like a sherpa so I didn't mind missing that last mile.

The vitamin D felt good and I'm sure I'll sleep well tonight.

I'm restraining myself from cutting the med dose back even more. I know I should take it slowly but I really want this just out of my body.

This is something I found on Amazon that I think will go perfectly with my Delta Wave sleep CDs. Soothing music is great but if your earbuds start to get uncomfortable it defeats the purpose. The headphones are built in flat inside the headband.
[ame="http://www.amazon.com/dp/B00ODQM7MG/ref=pe_385040_128020140_TE_3p_dp_1"]Amazon.com: Foxnovo Novelty Soft Comfortable Sleeping Headphones Sports Headband Headphones Earphones Headset (Black): Electronics@@AMEPARAM@@http://ecx.images-amazon.com/images/I/41roW-MjdoL.@@AMEPARAM@@41roW-MjdoL[/ame]