The bad news came by phone: “Bad news. You failed randomization. You measured 2.5 but needed to be no more than 2.”
“Oh,” I lamely replied, wondering what 2 and 2.5 meant. Millimeters, maybe? I didn’t ask, though. I knew it referred to the measurement of villi and how damaged they might be from exposure to gluten.
The coordinator sounded so dejected. “We’re really disappointed,” she continued, and I thought I heard her add “in you” under her breath, but that was my inner voice, not her outer one.
“I’m so sorry,” I said, feeling as if I really had failed her, failed all of celiacdom.
“It’s okay,” she responded. “At least it means you’ve healed a lot just by following the gluten free diet.”
“Well, yes, that is good news,” I said, though I still felt like a failure and I immediately began berating myself for not having the guts to put my guts on the front line and eat a piece of a piece of whole wheat toast or take that bite of a pumpkin bagel.
So much for all those times I deliberately didn’t guard against cross-contamination: the crumby, crummy coffeeshop tables; the gluten free candy from a glutenous bag; the people at a reception shaking my hand after popping crackers and cakes into their mouths; the dinner at the place that brags of its gluten free menu while it allows its line workers to assemble gluten free meals on the same surface as the regular meals.
To be sure, the cross-contamination did sicken me and the villi still are a little damaged. They and I just aren’t damaged enough to meet the strict controls for the clinical research trial. There has to be enough damage to test whether or not the drug heals it.
My blood tests, endoscopy and biopsies (skin and small intestine) in 2009 and again one year later all came back with the hallmark positives of celiac disease and dermatitis herpetiformis. Comparing those results with these new results, which still were weakly positive for celiac, show I have gotten well…I have healed….but I have not been cured. The gastroenterologist who performed this endoscopic exam did say my results show the gluten free diet still is the best and most powerful treatment for celiac disease.
How could I be disappointed with that? How could I feel badly about getting well?
Maybe this was the point I was supposed to learn from this whole experience: drugs aren’t always the answer. As much as I like leaving the doctor’s office with a prescription so I feel like I got something for my money, much of health and wellness has nothing to do with drugs. It’s about eating right, exercising, getting plenty of rest, and living an interesting, fun and rewarding life that includes being in healthy relationships with others, and making the world a better place by applying my talents to meet others’ needs.
Medications are important, essential and I am not criticizing them. We should strive to find not just treatments, but, more importantly, cures for autoimmune and degenerative diseases, lethal bacteria and viruses, cancers, and even catastrophic injuries. I’ve taken many, many rounds of antibiotics for all kinds of nasty infections, I make it through fall and spring with the aid of daily allergy medication, I can run thanks to good asthma treatments, and I have no doubt that I am alive today thanks to modern medicine.
At the same time, I have to remember I am one of the lucky ones. I don’t have to depend on a drug with nasty side effects to treat the symptoms of celiac disease. I can change my diet, dramatically alter my lifestyle and my habits (and my home) and become healthy. How miraculous is that?
If you are going gluten free, or you are struggling to be gluten free, I get it. What is asked of you is complicated, difficult, even expensive, but well worth it. It can be life changing for the better. Go ahead and clean out your pantry. Invest in all new cookware and all new gluten free foods. Toss your shampoo with chemicals that sound safe but really are derived from gluten, ditch the wheat germ oil and colloidal oatmeal moisturizer, and swap your drugstore or department store makeup for gluten free. Rejoice in this opportunity to try new things, to go on a shopping spree, to educate yourself about what’s really in what you put in and on your body.
You’re worth it and the investment is well worth it. I’m living proof.
I had my last clinical visit for the research trial a few days ago and it was as entertaining as the first one. Stay tuned for the details.