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
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I can't believe I am just now finding out about you. I have known Heidi for a long time - I am also mostly narco free b/c of gluten free (and a research scientist - how exciting!) I would love to chat with you. A few of us gluten free/narco free people are putting together a "gluten free survival kit" tailored for the narcoleptic, and would love to have you involved if you would be interested. Feel free to e-mail me anytime at graves.christina@gmail.com Look forward to hearing from you!!!!
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