The Pain of Progress

Whew. I’m two weeks into the baseline phase, which consists of not being too careful about keeping gluten far, far away from me and the effects are starting to take their toll. It’s one of the tougher aspects of this research trial: making sure there is at least one, if not more, “gluten events.” We celiac people call it “getting glutened.”

I can’t bring myself to pick up something I know has wheat, rye, barley or contaminated oats–I just can’t do it. What I have done is not be as militantly careful as usual about cross contamination.

I had coffee at a coffee shop I stopped frequenting because every time I went I got glutened. They don’t wash their hands after handling something glutinous and before they grab the cup in which they put my coffee. I tried wrapping a paper towel around the cup before handling it myself but I still got crumbs somehow. I also had gluten free pizza at Mellow Mushroom, which was quite yummy but the table on which it was served wasn’t really clean. I hate that. Have you ever noticed how unclean tables are at your favorite casual food joint? See those little crumbs, the smears you only see if you really look? Yeah, that’s someone else’s food right there on the surface where your food soon will be and not that I eat my food directly from the table top but watch where the fork and knife rest on the table and look before putting your hands down on the table before the the food arrives.

I also ingested some granola bars that say they have certified gluten free oats in them. The problem with oats is not that they contain gluten themselves, it’s that they become contaminated during the growing process thanks to crop rotation. The fields in which they are grown also have grown wheat and barley, which means the soil is contaminated with gluten. Up pop those little oat shoots in the glutinous dirt and you have glutinous oats. When I read about this phenomenon I was stunned. Crop rotation polluting gluten free grains? Sounded crazy but it’s true. Investigate it yourself.

People with celiac disease and gluten intolerance can have oats only if they are certified gluten free, which means they were grown in soil uncontaminated by glutinous grains and they test gluten free in production. Some people can’t even tolerate these purer grains and so health care professionals recommend no more than 1/2 cup of certified gluten free oats every few days or in one week. I had more than 1/2 a cup.

I can’t say which thing got me, but after two weeks of being deliberately slack, I’m in pain. Tonight when I call in to complete the six question symptom diary, I’m rating my pain a six and six is bad. It might be a seven. This stupid rash that I get along with the GI symptoms is the worst it’s been in three years. If all goes according to protocol, these symptoms should trigger a call to schedule my upper endoscopic exam to document the damage in my GI tract. It should look pretty good or bad, depending on how you view things. It’s good for me because it should allow me to move to the next phase of the trial, which involves taking the study medication or a placebo. And when that happens, I can go back to my normal way of eating and  we will see if the medication improves my symptoms and if I heal.

No pain, no gain, they say. I keep reminding myself there is a greater good at stake here and my pain is for a purpose. Grin and bear it! And then go lie down.