I'm new to this Celiac forum, and have read many, many posts tonite. Mostly because it feels like old home week. I have so much in common with so many who post on this list. I also participate in another Celiac forum, though the other one is of a different nature. Lots of ads from gluten-free companies for example.
Anyway, this particular thread interests me because I am a musician as well. I was a piano major in college and have a Masters Degree in Early Childhood. My husband and I perform concerts for children and present teacher workshops on integrating music into the classroom.
I don't know where to start, other than to first say that if I weren't so tired, I would jump up and joyfully click my heels. How great to find other Celiac musicians who are going through the same thing as I am. I concur, the memory thing has just gotten worse and worse. I can't memorize lyrics to save my life. I used to memorize entire concertos when I was in college! And I have a terribly difficult time following any kind of conversation. Sometimes in the middle of talking to someone, I realize that I have no idea what we're talking about. I'm often mortified at how stupid I feel.
I've been gluten-free since November, with the exception of re-introducing gluten in December. I had the TTG blood test in late October, my internist confirmed Celiac. She told me I didn't have to have the endoscopy if I didn't want to. I decided against it, went gluten-free for one month, couldn't believe how hard it was, and then decided to have the endoscopy. I found a GI doc in Boston who specializes in celiac disease and he said that in order to get accurate results, I'd need to go on a gluten challenge. I went back on gluten for one month. My stomach issues, which I really hadn't given much credence to, returned with a vengeance.
The reason I had the blood test in the first place was because after being diagnosed with Alopecia last March, I read and read and read everything I could on the internet. When I found a reference to the book "Dangerous Grains" by Ron Hoggan, I read it and found a mention of Alopecia and Celiac Disease. It was then that I asked my internist to do the blood test. Oh, yeah, no small thing....my sister was diagnosed with Celiac and Thyroid Disease (Hashimoto's) five years ago. Her GI doc never told her that celiac disease was genetic. Can you even believe it? Anyway, I essentially, I diagnosed myself! I had also been plagued with stomach issues my whole life. Nothing as serious as diarrhea, but stomach aches and in the last year before going gluten-free, I lived on tums (with never helped, and also contain gluten!). During that last year of major intestinal discomfort (I was also taking generic ibuprofen at night to help me sleep because my stomach would otherwise keep my awake). And of course, the generic ibuprofen also has gluten. Duh.
I think my hair is still falling out. It comes out in large clumps when I wash it. Though lately I think that has slowed down:). I'm hoping that within another 6 months, it will either stop falling out or even grow back where it has fallen out. It's not terribly obvious, you might not even notice, but if I pull my hair back behind one ear, you can see the severe hair loss. And I have a newer patch which began falling out on the back of my scalp as well.
After reading so many of the other posts on the other threads, I am going to make a renewed effort to get rid of the gluten in my life. I've thought that I've been really good about getting all the gluten out of my diet and life. But I've been a bit sloppy about some things like cosmetics and skin creams. Though I realize you don't ingest them, why should I take a chance? The thing that will be one of the hardest will be not coloring my hair anymore. My stylist/colorist said that she checked with Aveda and they insist that their dyes don't contain gluten. But after everything I've read on this forum, I'm not sure if I really believe her. Especially because almost everything Aveda makes has gluten in it. But the thing is, I am TERRIBLY vain. I've had my hair colored and highlighted and I really love it. My gray grows back very quickly and within three weeks, I need to have the roots redone. Do I let the gray grow out? Should I stop coloring it at the salon? Should I do it myself at home? I'll never be able to do as good a job as my colorist does.
Anyway, for those of you who read this far, thanks:). I guess I needed to vent a bit. If you want to know more about me, check out my blog at www.IAmglutenfree.blogspot.com. It's mostly about my cooking escapades.
Any suggestions on the hair dying issue would be most welcome! Thanks for all your posts. And good luck with the piano playing and memorizing. The scale thing takes time and effort. And practicing over and over and over. Use a metronome too. Any questions about it, feel free to email me.