Secondary Narcolepsy from Celiac Disease?

I received my Enterolab gene results!  Then a friend sent me a copy of a more comprehensive HLA typing that was done at Stanford years ago from some blood I donated for their Narcolepsy genetics study.  And both results totally confirm my theory that the gluten intolerance caused my Narcolepsy!  (and I also learned I wasted $149 for a duplicate test...)  :-\  But yay anyway for the results!

I have a strong Celiac haplotype (DRB1*07-DQB1*0202) in addition to a 3rd gene on the same locus (DQB1*0301) that's both a Celiac gene and the 2nd most prevalent Narcolepsy gene!  It's so exciting to finally be putting this all together.  It totally explains why I can control most of my Narcolepsy if I don't eat gluten.  Because I'm addressing the true cause of the symtpoms:  Celiac Disease.

Now, I haven't been formally diagnosed Celiac through a biopsy.  I can't tolerate gluten long enough to have the test done (it would take weeks of eating gluten to get that done.)  But I have the genetics and 2 family members diagnosed Celiac through biopsy, and that may have to be good enough.

So anyone who told me I couldn't have Narcolepsy because I didn't have the most prevalent Narcolepsy gene:  you can shove it!  My DQB1 locus is too full of Celiac genes and a different Narcolepsy gene for your paltry DQB1*0602.  And now I can prove it.  :)

So, here's what I learned about DQB1*0301:

Most patients with Narcolepsy/Cataplexy have DQB1*0602.  It's all anyone talks about.  But take away the Narcoleptics with *0602 and the most prevalent gene in this subgroup is DQB1*0301.  This 2nd gene is also part of a Celiac haplotype, although I don't have those other complimentary genes.  

I also learned that Celiac is known to cause secondary autoimmune disorders and allergies.  I belive this applies to me as I also have pollen, fruit, and latex allergies.  I believe that my Narcolepsy is a secondary autoimmune disorder to the Celiac.  They symptoms are partly typical Narcolepsy, and partly atypical Narcolepsy, and all traditional Narcolepsy medications work for me, but they don't address the real underlying cause.  After all, (and what I believe some people forget is,) Narcolepsy is Narcolepsy, regardless of the cause.

Furthermore, I found out I'm really not the only one.  I've already met a few people with this but today I found a thread on an old forum where at least 10 more people posted they had discovered the same thing:  their Celiac Disease caused their Narcolepsy and they live symptom- and med-free if they're gluten-free.

Now, it's interesting to note that DQB1*0602 is linked to lack of hypocretin in the CSF (cerebral spinal fluid.)  It is believed that lack of hypocretin causes the symptoms of Narcolepsy.  But Narcoleptics without DQB1*0602 do not seem to have the same lack of hypocretin in their CSF.  So, it may be that the antigliadin is acting on this hyopthalamic system in a different way than direct cell death.  It may be temporarily downregulating hypocretin through a different mechanism.  No one seems interested in studying it, so I guess we won't find out until I eventually get into grad school.  :P

Picazzo's Pizza

I had gourmet pizza last night and it was fantastic!  If you are gluten intolerant and want a fun (though slighly pricey) night out, check out Picazzo's Pizza.  Almost everything on their menu is, or can be, made gluten free.  There are only a couple of things off limits.  It's the first time in a long time that I've been able to sit down and consider eating anything on the menu!  

I ordered a gluten-free pizza with chicken and artichoke hearts.  It was a little skimpy on the sauce, but otherwise delicious.  What a luxury to eat the leftovers for breakfast!  I recommend this restaurant to anyone living in AZ or OR.  They go to great lengths to ensure your pizza is safe from cross-contamination (even though nothing is ever guaranteed 100% at any restaurant) and the staff seemed very well educated on Celiac, which made for a very relaxed evening.  I enjoyed a great meal, free from illness or sleepiness.  Ah, heaven!  :)

Cataplexy Questionnaire

Hey I just found this neat study Stanford did on using a Cataplexy quesionnaire as a predictive model for Narcolepsy diagnosis.  Guess what?  I test pretty 'classic' on this thing.  Take that, mean sleep docs who don't believe me!  You can go stuff it for all I care.  :P

I want for to eat pizza!

The other day my doctor told me that Garlic Jim's serves gluten free pizza with a corn-based crust.  And I was all excited that I could finally eat pizza!  Yummy pizza, even!  But alas, no.  It was a lie.  I called and the crust is rice-based.  However, this allergic girl just may order one anyway, and let the narocolepsy take her down in a fit of pizza-induced ecstacy.  One nap won't hurt.

UPDATE:  I broke down right after I wrote this and ordered one (with the encouragement of the family...they're such enablers...lol.)  I have to say it was AMAZING.  Total ecstacy.  It was greasy like a Pizza Hut pizza, and I didn't even mind the thin crust.  I'm a thick crust kind of girl, but at this point, any real pizza is heaven.  I'm happy to report that despite it's rice-based crust, I had no adverse reactions to it after I ate it.  No nap, no weird feelings.  Yay!  I did wake up with some burning gut this morning, but I suspect it could just be cross-contamination.  Rice never does that to me.  I'm almost inspired to buy plain rice and see if it really is an option for me.  Cross your fingers!  :D

Chocolate Cake!

I have had a baking phobia for awhile…not sure where it started, but I was supposed to bake a gluten-free cake for my son’s birthday last month and I just couldn’t do it.  I spent a lot of money buying all the ingredients…took me 2 hours in the store to figure it all out.  I was originally going to make a potato and corn starch cake from scratch, but when I saw the price of xanthum gum (a whopping $12 for a small package!) I opted for Bob’s Red Mill chocolate cake mix.   I finally made this cake last Sunday oh my goodness it was the best cake ever I’ve made! I wasn’t sure it would taste good since raw gluten-free batter always tastes terrible, but once baked it was indistinguishable from a wheat cake, and it was so rich and chocolaty! I made my own frosting from the directions on the back of the Ghiradelli cocoa powder can, but with less sugar. It was amazingly good. My whole family ate this cake pretty quickly! I can’t wait to make it again. Now…if only I could figure out chocolate chip cookies. Yeah I know of some really good recipes but it’s this fear of baking I have to get over…one chocolate cake at a time. Oh what a problem to have! lol

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! 

Profilins

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!  [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! 

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: http://www.ncbi.nlm.nih.gov/pubmed/16731510?dopt=Abstract

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.

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!

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!