Saturday, April 11, 2009
Corn Chex is now gluten free! I'm so excited. I love this cereal. And I can't eat rice, so I've been waiting for something corn-based to come along that wasn't in a dinky box, overpriced, and hidden away in the "nutrition" or "health food" isle.
It finally made it to my local grocery store, and it has "gluten free" listed in about 50 different places on the box, with an explaination of what it means on the back. I love it!! Hooray!!
Wednesday, April 8, 2009
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
Friday, March 20, 2009
Wine seems to be a hot topic on the celiac.com forum, so I've decided to post wines I've tried that seem ok to me to drink in hopes it will help others when they just can't decide what to try. I don't want to go posting to the forum when I don't have clear evidence these wines are gluten free, so I'll put it in it's own section on the right column of my blog this evening sometime. Then it's clearly just IMHO. :)
Update: Ok it's up. I'll keep it updated as I try new ones.
Saturday, March 14, 2009
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! :)
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
Saturday, March 7, 2009
It's done! What I've been waiting to do so long is finally under way. My Celiac HLA test! I'm so excited. I genotype mice for a living, now I get to genotype myself (for a nominal fee of course.) I'm really hoping it confirms my suspicions about a lot of stuff regarding things that run in my family and the gluten/narcolepsy link. Wouldn't it be awesome to finally have something on paper that verifies I'm not insane?
UPDATE: It came on Wednesday, which means I have to wait until Monday morning to do the swab and send it in. Monday?? Argh I can't wait that long! lol
Friday, March 6, 2009
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
Sunday, March 1, 2009
Here's another great list of things to avoid when going gluten free. Sometimes the memorization drives me mad. IMHO, labels should be absolutely explicit where gluten-containing foods are concerned. Nothing should be hidden.
Saturday, February 21, 2009
When I first started this gluten-free diet, I thought I'd never have anything good again. I lamented about it endlessly. But tonight was a triumph! Chocolate Thunder from Down Under is gluten free!! I used to crave this dessert when I was pregnant and who knew it was one of the only things I ate back then that was ok? I cried when I found out this was ok to eat, and tonight's meal was absolute bliss (they have an entire gluten free menu and the salmon was absolutely delicious!) I look forward to eating more very soon! :)
Friday, February 20, 2009
I did this song with a band I used to play with a few years ago. We put it on our demo for gettin gigs around town. I wish I still wrote songs as much as I used to in my younger days. This is actually just an Aimee Mann cover from the album of the same name. I'm singing and playing the guitar that sounds like it's on the right.