Birthday Surprises

Whew! Once again it’s been ages since I posted here. I’ve had a rough month healthwise so I’ve just been hiding in my room trying to get schoolwork done. BUT today is my BIRTHDAY! So I had to post something, lol.

I was all set to go to the local Greek restaurant in town and eat a giant slice of chocolate cake, but after some more tests last week to try to figure out why my digestive system hates me my doctor called me with some surprising information. Everything else was normal, but the biopsies they did of the lower end of my small intestine came back positive for celiac disease. So apparently I do have celiac? After negative blood tests and biopsies in the past I had ruled out that possibility so our phone conversation ended up with a great many exclamations of “Oh my God!” Really, that was the last diagnosis I was expecting to hear. She told me that it might take six months until my symptoms go away, which is a bit overwhelming. I keep worrying that they’ve got it wrong and I don’t have celiac but something else that causes the same damage to the small intestine, but six months seems like a long time to wait. Unfortunately, I don’t think I’m going to be one of those people who feels better after a few weeks or days, but then I keep reminding myself that it took me awhile to get into this mess so it stand to reason it will take awhile to get out of it. I haven’t let myself hope that if I stay away from gluten someday I’ll feel like a healthy human being again because I’ve been given so many diagnoses that never went anywhere and I don’t know if this means I don’t have Lyme disease or not. I guess only time will tell. And, of course, it will probably be awhile before I successfully weed every last milligram of gluten from my diet.

Sadly there are no gluten free bakeries around here so I searched around for some recipes and with the help of a friend made my own gluten free chocolate cheesecake (which I may have inadvertently contaminated by using the same flour sifter I use for regular flour *head desk*). It is enormous and beautiful and delicious looking! I haven’t tried it yet. It has a chocolate brownie crust, chocolate cheesecake, chocolate ganache on top and raspberries to decorate.

Here’s to being 26 and to a healthier future!


MFAs and Celiac Disease

The good news is I found out a few days ago that I was accepted into the Vermont College of Fine Arts MFA program in Writing for Children and Young Adults. I am so excited! They actually called to welcome me which I feel bodes well for the program 🙂 Leda Schubert (one of the faculty) also called to welcome me and answer questions so we talked a lot about Lyme Disease and possible accommodations. I admit that even though I’m excited about all the wonderful things happening in my life I’m also starting get scared. It feels like my life is moving on without me regardless of my ability to keep up with it physically. This is what I wanted. I wanted to keep having a life beyond being sick, but everything is happening so fast! We still have to record demos and then it’s off to Portugal. I’ve got to finish a novel and read enough books written by the faculty to get an idea of who I would like for an advisor. Before July! I hope I can pull it off.

The bad news is that my stomach has been much worse lately. It’s hard to pinpoint because it swings back and forth, but I think it started to disintegrate around Thanksgiving and hit an all time low in January. I had a moment of panicking a few weeks ago when I realized that if this continues (the pain, uncertainty and sore throat) I cannot hope to have a career as a singer. I can write to some extent with joint pain. I can write slowly. But I can’t commit to performances if I can’t depend on my own body. Being sick is hard, but I can deal with pain and fatigue. I can’t deal with things that keep me from physically able to do the things I’ve loved. And as much as I’ve asked myself for years if I had to choose between writing and singing which I would keep and which would go, I really cannot choose. It’s like choosing between your heart and your brain. I need them both. They complete me.

So with that in mind I hiked up my skirts and hied me to the internets to try to figure out what out of the myriad things I haven’t been tested for I might have. Let me tell you, the list is not comforting. There’s a lot of things that could be going on but from what I’ve seen most of them are mysterious in origin and would probably be something I just had to live with sans treatment. Then I reconsidered the possibility of Celiac Disease. This is something that has been brought up before but I always dismissed it out of hand because my main symptom is carbohydrate intolerance. “How can I have celiac,” I have asked many a doctor, “when I feel sick if I eat rice?” The irony is that whereas most people moan and sob about having to give up bread I have often said I wish I did have Celiac. At least then I would be able to eat chocolate and rice and corn and potatoes and gluten free desserts, etc, etc.

Anyway, I came across an interesting blog written by a woman who has celiac and small intestinal bacterial overgrowth (which causes carbohydrate intolerance) and my brain did a backflip. What? You mean you could have both simultaneously? Apparently I have less imagination than I thought, lol. Turns out many people with Celiac have small intestinal bacterial overgrowth or SIBO. When people go on the gluten free diet and still feel sick this is a common cause of their continued symptoms. IT’s very possible that celiac itself causes SIBO in these people because it destroys the lining of the intestines and interferes with proper digestion. So I started looking up more about Celiac. It can cause joint and muscle pain, headaches, fatigue, numbness, tingling, dizzyness, and many more things. It runs in families. Like Lyme disease it’s underdiagnosed and the tests aren’t always accurate. I was actually tested once but don’t know which tests they ran and was on a mostly gluten free diet at the time which makes it nearly impossible to get an accurate result. It’s actually odd how many similarities there are between Celiac and Lyme only Celiac is actually recognized by the medical community as a legitimate illness.

To make a long story short, I talked to my doctor about getting tested and we agreed that it was a likely possibility. The only problem is I have to eat large quantities of gluten (bread, etc) for a month before getting tested which means I feel like shit. It’s actually amazing how many of my symptoms are back in force just since I started eating like this which makes me wonder, do I have Lyme or Celiac? I know I could have both, but it is rather inconvenient that I went on a more restricted diet when I started taking antibiotics. Now it’s impossible to say whether it was the diet or the antibiotics that helped. Part of me is enjoying eating all the things I haven’t been able to eat in two years. I’ve eaten oatmeal pancakes, lots of bread, ravioli and pizza. Oh bliss! I still have to eat a marionberry muffin, a giant slice of chocolate cake and french toast because regardless of what the tests say I cannot eat like this again. It is death. So I shall enjoy myself while I can. I also did a different test for SIBO since the last one was negative and got me curtly dismissed by my gastroenterologist.

I was praying last night over and over again that this is what I have because then maybe I could get better and get my life back. Maybe after being carefully gluten free I’ll someday be able to eat rice and fruit and chocolate again. Maybe my throat will stop hurting me. Maybe it will explain the mysterious illnesses of both my parents who btw are cousins (yes, it’s legal. No it’s not gross) so double the genes. My dad’s getting tested too. I’m keeping my fingers crossed. Of course, I would probably be the ideal candidate for a gluten free diet as I love the idea of having to reinvent all my favorite baked goods. Gluten free chocolate bobka! Gluten free chocolate cranberry bread! My celiac friends (I seem to meet more and more people with this disease) will love me. The one thing that breaks my heart is that I would never be able to eat a Pasteis de Belem again. That is a true tragedy. I guess I’ll have to invent my own.