Well I'm learning I may have a gluten sensitivity. This was a bit of a shocker to me. I knew what celiac disease was, and I definitely don't have that. Until now, that was my exposure to gluten allergies. I do have Fibromyalgia and have been living with the disorder for 6 years now. I would say over 75% of the FM symptoms I experience are also symptoms of gluten sensitivity, and a few other symptoms not related to FM. I kind of had a moment of, "You mean to tell me I've been sick this whole time and I could do something about it?"
Living with FM is daunting. You are in pain everyday and no matter how serious it is the doctors don't have enough information to treat you. You can't take any drugs that help because you might be addicted. They won't monitor you because they can find nothing wrong. I recently had a test done where they stuck needles with electrodes in me and shocked me beyond pain limit to measure my response. Not fun. At the end of it the doctor told me he could find nothing wrong with me. I was in tears. I've learned how to cope and stay within my limits, but it is still hard. There is literally nothing doctors can do to treat or relieve the symptoms of FM. It's disheartening. At this point I'll grasp at straws.
Gluten sensitivity is the straw I'm reaching for now. I honestly can't tell you if this will do any good for me or not, but I'm willing to try. Starting after my daughter's birthday in a few days (Why? Because I want cake. That's why!) I will be going on an exclusion diet. No gluten for 60 days, and we'll see what my body does. It might be a miracle. It might be a disaster, or it might be meh. The point is, for the first time in a few years I'm willing to try to live without this syndrome hanging over me.
That's a brave thought. Sometimes when you get used to having a chronic disorder you sort of accept the world as it is. Living without FM for me would mean, more energy, less pain, the ability to do things outside of my home. Life in the sun. Nice thought eh? Well it also means people expect more of me, less excuses, and the inability to bow out gracefully when you hurt. Which means I have to be good about saying 'No' sometimes. With luck I won't hurt anymore, but still there's a security blanket there. Pain free is the unknown and a little scary.
I think my friends give me the courage to throw away the safety blanket. I have some truly amazing coworkers who inspire the best out of me and help me cope with my own brand of drama. I don't think I'd have the courage to do this without them.
Now you've read this whole thing and are probably sitting there thinking, "What is gluten, already!" Sorry. It's a blog and I tend to digress a lot. Gluten is the binding protein found primarily in wheat, oats, barely and malt. For people who are sensitive it throws them into an auto-immune overdrive and generally makes them fell crappy. An exclusion diet means nothing with flour, wheat, oats (unless specifically gluten free, there are some believe it or not), barley, or malt. This means no malt powder in my malts at ice cream shops, no gravy thickened with flour, no soy sauce (many have wheat added), no bread or baked good obviously, no pasta (unless rice pasta), watch the cereals and read the labels on everything. Gluten hides everywhere. This is not an issue of bad foods being given for public consumption. I want you to think about cooking dinner in your house. How often do you add a little flour to thicken something without thinking? How many recipes call for pasta or bread products? What about making a sandwich for lunch or pancakes for breakfast? How about pie? Nope, can't have that, the crust is made with flour. Flour is a staple of our country. It goes in almost everything.
This will be hard, but having known someone who lived with celiac disease I know it's possible. It will just look different for awhile. Wish me luck and many good gluten free recipes.
Susan is a plural writer and artist by day, a child and pet wrangler by night, and occasional crazy person on the weekends.