Friday, December 26, 2008

Winter Storm

The weather outside has been frightful! The last week and a half has been nothing but ice and snow for us here in the Pacific Northwest. I managed to get some great photos before it started to melt yesterday (I mostly just wanted to get out of the house!) The white Christmas was nice but I’m dying to drive somewhere. Cross your fingers the snow melts this weekend so I can actually get my car out of the parking lot.

Orexin Nasal Spray

My old lab collaborated on this study awhile back and I just found it. I know injecting orexin like insulin isn’t so successful because too much or too little doesn’t work at all.  Wouldn’t it be so cool if Narcolepsy could be treated with an orexin nasal spray like seasonal allergies?  Maybe that’s far-fetched but I sure do like the idea! 

Thursday, December 25, 2008

FDA and Food Allergies

I put a link to the FDA page on food allergies in my blog roll.  It’s interesting to see what the thought process is.  For some reason, they don’t take neurological symptoms into account when making their allergy labeling laws, unless you count “Sense of Impending Doom” which my boyfriend says, and I quote, “LOL!  Sorry but that’s just stupid!!”

 They also don’t know what percentage of the population is sensitive/allergic to gluten.  Hmmm. Is that just the Wheat Lobby doing their job?   You can read more here on their thought process in making labeling laws.

 My dream: EVERY food product that contains gluten or has a sub-ingredient of an ingredient that contains gluten must say “contains gluten” clearly on the package.  I say, make THEM do the work for a change instead of me having to memorize tricky “hidden gluten” ingredient names, google products, and call manufacturers every time I go shopping. (Thank god for BlackBerries!!)  I am really getting sick of getting sick.  Ya know?


I am sensitive to several fruits, and for years I was trying to find a connection between them all.  A couple of months ago I thought “Hey, why don’t I just put all the fruits I’m allergic to into one Google search and see what comes up?”  The result?  Profilins!  Turns out, most of the fruits I’m allergic to — almost all of them — contain a profilin (plant protein) related to Birch Tree Pollen and Grass Pollen (which gives me severe hay fever every summer. So stupid to move next to Linn County, OR for 5 years…the “grass seed capitol of the world”!!!)  I had a great link to a chart that lists profilins and related fruit allergies, but I’ve lost it.  If I find it again, I’ll post it for sure.

So the coolest part about this find is that the experts on fruit allergies state that profilins are found more in the skins of, say, apples, than in the rest of the fruit, and that any process that pasteurizes or cooks the fruit degrades the offending profilins. Peeling works, too. So I tried it out and when my son asked for apples, I ate one slice but left the peel. Guess what? I didn’t have to take a nap! Then I ate the peel and BLAMO! Super tired.

I’m going to try apple juice next time we buy it because it’s pasteurized and will probably be ok too. That would open up a WORLD of possibilities to me, juice-wise. Do you even KNOW how many juices use apples juice as a base? Almost all of them. I can’t tell you how much I love apples. I used to eat Granny Smiths by the bucket full when I was younger. I think if I just peel them I will be able to eat them more regularly. Super cool! :D [happy dance]

Of course, there are some fruits I have severe cataplectic reactions to, like bananas and kiwi, which are linked to the above-mentioned profilins, but also to latex, which also gives me a rash. If I even smell a banana from 10 ft away, I get cataplexy, so this tactic might not work for all of these fruits, but still…the apple thing has me really excited. (Interesting side note: got a rash from latex? try applying hemp lotion. for some reason it seems to make the rash go away pretty quickly. I’m no fan of cannabis, but hemp has my vote for sure.)

UPDATE: OMG I just ate an entire peeled apple and I didn’t have to take a nap. No cataplexy, no sleep attack. HOORAY!! It’s been 7 years since I ate a whole apple! My favorite juice of all time is Cran-Apple. Woo hoo! Apples & cheese … one of my favorite all-time snacks. I’m gonna have fun with this one! :D

Tuesday, December 23, 2008

Rice Pasta

I tried some rice spaghetti yesterday and it wasn’t very successful.  It didn’t make me sick or foggy-headed, but it made me very tired and sort of dizzy for about 30 minutes.  I know if I ate more I’d be taking lots of naps, too, so …  darn.  Back to the usual fare for me.  I’m hoping to try corn pasta sometime in 2009 just to see what it’s like.  I hear it’s pretty good (albeit expensive!)  

The downside of this latest test is that I need to make a cake for my son’s birthday and I was hoping to use a pre-made mix so I don’t have to make my own flour since I don’t know how often I’m actually going to use it. But the ones I’ve looked at all seem to have rice flour, which just wouldn’t do for me. I don’t feel comfortable cooking a wheat cake because I could get sick from inhaling and swallowing the flour dust. If the snow ever clears up, I’ll make a trip to the health food store to see what they have. If I could find a rice-free flour, I could just follow a recipe, but I don’t want to order one online right now for some reason. I don’t want this cake to be too much work, but we’ll see what I can come up with in a week. We may just have to buy something pre-made from the grocery store for him.

Why PWN Shouldn't Eat Sugar

I was about to write this post when someone on the Narcolepsy Network Forum posted about getting sleepy from eating Christmas goodies.  So here’s what I wrote there: 

PWN should not eat sugar. Heidi L. sent me a link to a scientific paper that explains that glucose binds to orexin neurons and keeps them from working. Presumably, if you’re one of those PWN that’s lost 90% of your orexin neurons, you’ll want to maximize the output of the remaining 10%. Keep in mind that you can’t store glucose in your brain. It’s stored in your liver, which sends it up as needed. Your brain requires a lot of energy through the proper channels. But if you are constantly spiking your blood sugar, well, that can’t be good can it? I’ve had to avoid sugar for years because it makes me sleepy.

Also consider that the sugary items you were eating contained wheat gluten, which several of us find exacerbate our symptoms immensely.

The premise of the paper (see link below) is also a good reason to avoid getting Type 2 Diabetes since that would keep your blood glucose levels high even if you don’t eat anything. I know there’s a blood/brain barrier but obviously glucose has to get in to feed your brain. Following a low-glycemic diet might work well for you. Your body is capable of converting just about anything you eat into glucose; fats, proteins, and more complex starches & sugars. Natural foods like fruits & veggies and healthy meats will give you all the energy your brain needs without the sleepiness. The longer it takes for your body to break down the food, the better it is for you, although you have to watch your fat consumption because fat packs twice as many calories pound-for-pound as sugar does. High fat diets will also cause diabetes.

As far as sugars go, High Fructose Corn Syrup is the worst, (and a misnomer.) It’s 50/50 glucose/fructose floating separately from each other in both of their isomer forms. Your body doesn’t even have to work to break down the corn sucrose…some industrial chemical process has done that for you. Since your body uses d-glucose most readily, HFCS is going to spike your blood sugar more than any other type of sugar you could consume. If you’re drinking sodas to keep awake…well maybe try some coffee or tea. The aspartame in diet soda isn’t going to be any healthier.

Here’s the paper:

Thursday, December 18, 2008

Holiday Music

Ok, I know this has nothing to do with Narcolepsy, but I was searching for the John Gary Christmas album today and found this great site called Hi-Fi Holiday.  They take out-of-print LP’s and convert them to mp3’s for your listening pleasure.  I’m in vintage holiday music heaven!

Gluten Free Brownies

When we went to the store to stock up on food before the impending snow storm that didn’t happen, I found Bob’s Red Mill Gluten Free Brownie Mix.  It’s made from sorghum flour, potato starch, and corn flour.  I figured, what the heck?  Snowed-in with some Silk Soy Nog and Gluten Free Brownies?  Awesome!  It was very gooey to mix and I had to use a spoon instead of a mixer.  I used a 9×9 pan instead of a 9×13 because it’s all I had, and I ended up with something almost entirely like a whole-grain chocolate cake. 

 While it was cooking I did some resarch on sorghum.  It’s a grass/grain like wheat, but it doesn’t contain gluten.  Awesome, right?  Since I have a history of Narcolepsy symptoms from grains, I ate this brownie cake with the understanding that it might not be the answer to my cake needs.  

So how was it? Heavenly! I didn’t get any Narcolepsy symptoms from it, but I could only eat once piece because it was pretty rich. Oh what a problem to have, right? We’ll see how I react to it over time, but I’d say if I didn’t fall down or crawl into bed by now, I should be ok. Cross your fingers! 

It’s been really difficult over the past few years to experiment with foods that trigger my own symptoms when I don’t really have established rules to work from. I’ve spent years trying to figure out what the basic rules of my food sensitivities are so I could better avoid offenders and find tasty new alternatives, but it was really hard. As a result, my diet’s been pretty simplistic and, at times, bland. 

Since I’ve discovered the gluten intolerance, I’ve felt quite a bit of freedom in trying new foods as long as they fit into the ‘gluten free’ model. It’s like, all I have to do is follow what everyone else has already discovered and I’ll be ok. This could be a misleading way of going about things, but there are times when this has worked remarkably well. Where once I thought I couldn’t eat ANY cookies ever again, I’ve found at least one gluten-free alternatives that works just fine without any consequences. I want to expand this to include other treats because I used to love baking and it would mean a lot to me to bake once again on a regular basis. 

I’m not going to limit my experimentation to baked goods, certainly, but it’s my current project. My son has a birthday coming up here pretty quick and it would mean a lot to me to be able to share his birthday cake with him, instead of just watching the family eat it and trying to not care. To think I could bring a safe treat into work for a meeting and actually eating it too instead of feeling angry and frustrated while I watch them munching away, well that would be heavenly. But the only way to find these safe treats is to eat them, right? 

There are those that would consider it unwise to go back to grains trying to find alternatives, but I say, if it doesn’t make me sick, sleepy, or paralyze me, it’s friggin awesome!! 

Tuesday, December 16, 2008

Falling Asleep on the Bus

The cold weather is getting to me, especially when I have to stand out in 17 degree weather for 2 hours trying to get to work using public transportation.  If our city would just plow the roads, I could drive, but they won’t do a darned thing to clear the ice on the roads.

So I was totally falling asleep on the bus on the way home. Traffic was terrible and I kept dozing off and dreaming about something strange. Then I’d wake up enough to realize I was asleep but I couldn’t open my eyes. Oh it was terrible. I finally managed to wake up close to my stop. I don’t know if it’s the exercise I’m getting trekking through the ice and snow to get to the bus or if it’s just the cold, but man I just can’t keep my eyes open! Argh.

The funny thing is, at one point I realized I wasn’t sitting straight. I was riding in a sideways seat and was at the end of the row. Turns out the guy next to me was asleep, too, and was leaning on me, pushing me off the arm rest! Hilarious.

Evil Salad

Yesterday I ate at the cafeteria because, even though I brought my own food, I was really craving a salad.  Plus it was super cold out and I wanted some decaf coffee, which I can’t consume regularly, so I have to find someplace to buy it on occasion.  So I went in and told them I wanted a salad but was afraid to order because I can’t eat gluten.  They recommended the greek salad they had (which had extra non-greek-salady things in it like artichokes and garbonzo beans) and swore up, down, and sideways it was gluten free.  So, like a sucker, I got it. 

It was extremely tasty, which always makes me suspicious, but I ate the whole thing.  And then the sleepiness hit.  Ooooh I was so sleepy I wanted to put my head down on my desk and sleep all afternoon.  I could barely think, which is bad when I have to do calculations and mix chemicals all day long (it’s ok, not dangerous ones!)  I was so mad…”Not gluten free!” I thought.  Ha! 

I was dreading feeling sick that night and was praying that I would only have to deal with the extreme sleepiness and nothing more.  ”I can handle sleepiness” I thought.  It’s hard but not physically painful.  Well turns out they were right.  I didn’t get sick.  So it was something else in it that made me sleepy (like that’s difficult.)  I won’t order it again, but I do sort of trust their judgment on the gluten thing.  Sort of. I tried a different salad today that didn’t have dressing and I did just great. :)

It’s times like these that I feel so defeated. I work so hard to feel “normal” every day. When something like this happens I get very frustrated. Like what’s the point of trying when it’s so easy to lose it all? It’s like I’m taking 2 steps forward and 1 step back, but I’m still going forward. (no, the Paula Abdul reference is not lost on me. An “American Idol” ad just happened to come on the TV at the moment that I wrote that.) So I can’t get too discouraged. I’m still working my way up the learning curve, after all.

Sunday, December 14, 2008

A Successful Night Out

Last night I went to a party at the Adrianna Ballroom in Portland, OR. As soon as I got my tickets, I was concerned about the dinner menu. So I e-mailed one of the party organizers, who put me in touch with the staff at the ballroom. I was very polite and simply asked if there would be any gluten-free food, or if I should simply eat ahead of time and skip the dinner. They were courteous and sent me the dinner menu right away. I decided that the salad and the beef would probably be ok to eat, so I e-mailed them again just to be sure the beef didn’t have any hidden gluten in a seasoning or marinade. They were very nice and promptly sent me the ingredients, which were fine.

When I got there, I was a little nervous, because we arrived late and everyone had already been through the buffet. I was worried that they had mixed the utensils and cross-contaminated. However, despite the mess on the buffet tables from sloppy serving, the salad was at the very beginning (with separate optional dressings…very nice!) and the beef was at the very end on its own table because it was being sliced by the kitchen staff.

The dinner was amazing and I brought my own cookies in my purse for dessert, so I didn’t feel like I missed out on anything. My first gluten-free dinner out was a success. I did not get sick or sleepy from the food at all. We had a lovely time!

Thursday, December 11, 2008

Eating at Work

The building I work in has a nice big lunch room with a full-sized fridge, lots of counter space and microwaves, etc.  We have community dishes and silverware.  But lately there have been no forks, so I brought my own.  I already have my own bowl since I was on a soup kick for a while last summer, and I hide both in a bottom cabinet in a plastic grocery bag.  

So yesterday I went to eat my tuna salad and my fork was gone!  I panicked, then noticed it was in the community silverware holder.  The one with all the yucky crumbs at the bottom.  I’m sure I probably put it there by mistake after washing it, just out of habit.  I pulled it out and it was covered with these dried pink blobs.  At first I was stumped and then I remembered.  OMG cake!  The cake with the cherry frosting that was on the table the day before.  Someone used my fork to eat cake.  The horror!!  I turned the water on scalding hot and scrubbed and scrubbed.  But there were a few crumbs stuck between the tines.  I thought maybe if they didn’t come off in the scrubbing that I’d be fine.  But 11 hours later I got really tired and had to go to bed early (I ate an early lunch…I kinda do a brunch since I usually have to skip breakfast.)  I thought maybe it was the Tai Chi I did earlier, but no…as soon as I went to bed the seizing and paralysis started in.  All I could do was try to fall asleep.  I’m switching to disposable forks from now on.  

I’ve never encountered this problem before because most of the foods I’m sensitive to are easy to see and avoid.  But man, gluten is so pervasive and insidious!  Argh.

Wednesday, December 10, 2008

Rice Flour Followup

Well this morning I had some intestinal cramps, mild cataplexy, and I was sleepy all day and kept spacing out.  So, either I was mildly glutened by the cookie, or rice flour still does not agree with me, even if it’s gluten-free.  I’m thinking it’s the latter.

Tuesday, December 9, 2008

Cookie Quest II: The Rice Flour Test

Ok, so I actually bought 2 kinds of cookies yesterday, but I could only test one at a time. Otherwise, I’d never know which one caused a problem if I had one.  So, corn starch/soy flour: check.  On to rice flour.

For those who know me personally, rice has not been my friend for many years. I have had to avoid all grains. In the past, when I tried rice I could eat it once, but twice always sent me to bed right away for a long nap. However, having just discovered the whole gluten thing, I can’t say for sure that the rice I tried 4 years ago was really gluten-free. Some of it was in casseroles. So begins the rice experiment. 
Tonight I tried a gluten-free chocolate chip cookie made exclusively of rice flour. It was a pretty hefty size so I only bought one. Surprisingly, it was bland, just like that dream I had weeks ago. I felt ever so slightly funny when I ate it but I didn’t have any subsequent problems of any kind. However, given my rice symptom dose dependence in the past, I’ll have to do a more extensive test to find out if it’s really something to avoid, but at least I know I can eat one rice cookie in public every year without incident.

So now the aside… Man I was dying to eat this thing all day. I had it in my backpack but I knew the golden rule:

never test new food in public!

Not at work, not on the street or in a restaurant. Not unless I want to end up in the ER with doctors pinching me, stabbing me with needles and threatening to catheterize me if I don’t confess to taking street drugs. An uneaten cookie is a small price to pay to avoid that kind of humiliation and pain. Don’t you agree?  Besides, I had important work to do at work…I didn’t have time for naps and cataplexy. lol

Monday, December 8, 2008

The Prophetic Dream

I’m not quite sure what to write for my first post, so I’ll tell you what happened to me today. First I’ll start with 3 weeks ago.  I went 100% gluten free and since then I’ve been having nightmares about food every night and even during my daytime naps.  I walk through CostCo looking at the giant shelves of gluteny goodness, teary-eyed thinking I’ll never partake of their sugary goodness again.  But one dream 3 weeks ago was different.  I dreamt I was eating gluten-free chocolate chip cookies — and nothing happened.  No brain fog, no sleepiness, no cataplexy, no growing 2 pants sizes in 30 seconds.  Nothing.  Happened.  I have never had this dream before! Since then I’ve been sort of obsessed with trying a gluten free cookie…just to see what happens.  But I was afraid to ruin that image of perfect cookie bliss.  Today was the day.  I bought Glutino Vanilla Dreams, which are mostly corn starch and soy flour.  I liked the ingredients because they used more fructose and xylitol than sucrose (I try to be fairly sugar-free as well as grain-free.)  The consistency was exactly like a wheat cookie and they had quite the lemony flavor.  And then I waited for the inevitable.  And guess what?  Nothing happened!  Nothing.  Happened!  My dream came true.  I must have been the happiest person on earth.  My mouth was happy and my brain was clear.  Never have to two met so unanimously over a cookie.   So why am I so happy over a darned cookie?  I will post more on that soon!