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

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! 

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?

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