Wednesday, May 25, 2005

Why Gluten Free

Mishka asked in a comment why do I eat gluten free. I don't know that I've ever really addressed it in this forum. Originally when I started this blog it was a way for friends far away to keep up. Few of them actually read it - but they all knew. :) Anyway, about 9 years ago, I was diagnosed with Dermatitis Herpetiformis. It is a condition related to Celiac Disease characterized by an intolerance to wheat, rye, oats (maybe) and barley. Dermatitis Herpetiformis is not related to Herpes. Herpetiformis means lizard skin, which is what happens when/if I eat wheat. My skin breaks out into these very painful, very itchy blisters that burn when scratched open. If you were to look closely at my skin today, you could see scarring on both arms and hands from the condition.

It was so bad when I was living in Alaska before I was diagnosed that I couldn't sleep at night and often thought about burning my skin with something hot just to stop the blisters. (Damn at 3 AM when you haven't slept fully in days because you burn and itch so bad you'll do ANYTHING to stop the pain). It didn't help that the doctor at the poor person clinic I was going to at the time had no idea. She first treated me for Scabies. It wasn't. She recommended Aveeno oatmeal baths. Did you see the part about oatmeal not being on the diet? I was essentially making it worse. Then she sent me to a dermatologist. She biopsied 2 of the blisters and found out that was what it was.

Of course, then what to do? I immediately stopped all wheat consumption and bought 2 cookbooks that were awesome. The first was the Gluten Free Gourmet by Bette Hagman and Against the Grain by Jax Peters Lowell. Of the 2 I'd recommend Against the Grain first, just becuse Gluten Free Gourmet is strictly a cook book, Against the Grain is about really dealing with it in public. I was treated appallingly in public because of the rash. I worked at a bookstore at the time and often parents would say can my kid touch you or can you breathe on them because the mistakenly thought I had chicken pox. I went to KFC with my friends Kate & Katie and the waitress (yeah Fairbanks' KFC had waitstaff, I know that's weird) bluntly asked me first what my problem was without even taking our order. Then she would go out of her way to avoid me. (Seriously, walking in a circle so that she didn't walk near the leper.) I was embarrassed but Kate & Katie were incensed. I believe they sent a complaint card to the home office. I tried a bunch of Gluten Free products. There weren't a lot out there like there is now. The bread was gross. I learned to live on rice cakes and rice dishes.

Eventully, I got health insurance and was prescribed Dapsone. Dapsone keeps the rash at bay. Even going GF, I never fully stopped getting the rash. The intensity was much less and it was much more survivable. But because it is a skin issue, it takes longer for the body to react to a food because it has to go through the whole digestive system etc. Conversely, it takes longer for something to clear up. There're a lot more foods now that are GF and aren't gross. (A descriptor I use frequently). And every year, I forget a little more what good food used to taste like. :)

So there you have it, the entire why I don't eat gluten. :)


Mishka said...

Now I understand why you are so diligent. What a terrible experience you had to go through before getting some answers. People can be very cruel.

I am glad you finally got someone that knew what they were doing and could give you some information. I hate it when people that should know, don' leaves me very irritated. I am a "why" person and no answer is never going to make me happy.

Kate the Peon said...

UGH. Sorry you have to deal with that, Joanne.

P'nut said...

So, that's what it's called! The woman who waxes my sister (TMI?) has the same thing. All my sister could remember was that she was "allergic to bread & pasta". I felt bad for her because she's Italian and her husband refused to change his diet so she had to make separate meals for herself than for him and the kids. To be honest, I could not survive without bread. I love all kinds. I love it far too much.