The Gluten Free Gift Horse

It’s all about the numbers.

I remember that admonition from my days in retail sales. From late summer through Thanksgiving of my senior year in high school I sold produce in a tent that sprawled across the parking lot of a family-owned bakery/restaurant. I learned how to encourage diehard Macintosh apple lovers to taste test a Cortland and a Mutsu or maybe even a Jonathan so they walked out with five pounds of apples instead of one. I practiced the art of up-selling so someone who stopped in for just a few tomatoes to buy all the ingredients for a technicolor salad. I proved so adept I joined the indoor bakery sales team just in time for the Christmas season. Bakery girls skillfully moved customers from six donuts to a full dozen, made sure apple pie lovers went home with the large instead of the small and at least a half gallon of freshly-pressed apple cider. If you wanted a loaf of bread, we happily thrust it through the slicing machine for you, talking all the while about the sandwiches you could make on that bread with the delicious meats and cheeses available in the new delicatessen/fish market now open right through that archway.

After moving to Atlanta for college, I sold celebrations and possibilities in a gift/collectibles/glass-and-tableware shop; luggage and fine leather goods in, well, a luggage shop; fine jewelry in a now-gone department store; and even Avon–briefly. In each place, numbers were the goal, even more than the happiness or satisfaction of the customer. The numbers reflected customer satisfaction, the said: the more satisfied, the more the customer spent and the more often they spent it with us, my managers believed.

I often wondered about the veracity of that viewpoint. I remember the little boy who looked all of about six. He came into the gift shop with a sack full of pennies and all by himself.  He said he wanted to buy his mother a birthday present. After spilling the pennies onto the counter, we  counted them together: he had two dollars and seven cents in pennies. They wouldn’t buy much, but I couldn’t tell him that because he thought he had a fortune. His mother liked horses, “But they cost way more than two dollars,” he said solemnly.

I said we happened to have some horses that did cost about that much. I showed him the collection of small animal figurines we had on spinning display racks. His eyes huge, he very slowly turned the display case, looking at each animal. He found three horses, each a different color and in different poses. We put them on the counter so he could compare them side by side. It took five minutes of careful deliberation before he chose the jet black horse in mid-gallop. He said, “She can imagine flying on this horse when she gets sad and it will make her happy.”

“Okay!” I said, smiling, my own heart flying. “One flying horse, coming right up!”

The horse cost four dollars and fifty cents, well over his budget, so I dipped into my purse under the counter to make up the difference, which he didn’t know. I also put it in a tissue paper nest in a small gift box and tied it with sparkly ribbons. That little boy left, beaming, and I swear three inches taller. Just before he walked out the door he stopped and looked up at me (I had walked him to the door). “Thank you, lady. This is the best birthday store ever!”

It was my best sale ever. Not in dollars and cents–I once sold a woman three hundred dollars worth of wedding gifts for nieces and nephews she frankly said she detested–but certainly in a job well done and done for good…for the good of giving.

I thought of this as I was completing my telephone celiac symptom diary last night. I’m able to complete it in four and a half minutes now. That’s fairly efficient. The numbers I report are higher these days: more pain and more symptoms, which should mean more damage to see during the endoscopic exam now scheduled for October ninth. I’m increasing my numbers just as I did as a sales girl. The numbers don’t get me a bigger commission check in this case, but that’s not the payoff I seek. I’m still going for the good of giving. Think of it as a little gluten free birthday horse.

Do You Ever Cheat?

I get asked this a lot. It makes me wonder if I have a scarlet A or G on my apron.

I’ve stopped being so defensive when someone asks me this because I’ve realized they aren’t asking me if I have secret stashes of men or women in foreign ports –or even metro ports. No, I don’t.

The question follows being outed as having celiac disease and having to follow a strict gluten free diet. It seems to be inconceivable to many that life could be good or even tolerable without a slice of seven layer cake or a “real” sandwich on “real” bread. There’s always the sly reference to a chicken biscuit affair but I deny it with a clear conscience. Even if I could dance with wheat, I’d deftly dodge a pas de deux with a chicken biscuit.  I never was a biscuit girl so I don’t miss them at all.  Blame it on being born and raised in the Garden State. That holey bagel, on the other hand, does sometimes look dreamy, especially this time of year, when the autumnal glow of a pumpkin or cranberry bagel  beckons with its toasty tan and chewy fragrance. I could sink my teeth into that tasty morsel!

Except, not really.  Cheat? On what? On whom? I’ve figured out that they mean cheat in the sense of what dieters do when they have a piece of cake after starving all week. I get that. The thing is, if I was dieting and I ‘cheated’ by committing a seven layer sin, the only thing I’d harm is the balance sheet for caloric intake.

If I ‘cheat’ and eat something made out of wheat, barley, rye or regular oats, it would be quite another story. I’d upset far more than the scale. That old addage, “a moment on the lips, a lifetime on the hips” would have to be seriously amended to “a moment on the lips, weeks of agony above the hips.” I would develop what once was mistaken for a “baby bump” by a stranger far too interested in my figure.  That inflammation they talk about taking place inside the gut? It sometimes can be visible, at least on me, likely because it creates additional bloating as the entire pipeworks malfunction.

The vain vein in me detests the “younger looking skin” on my face: younger looking as in looking like puberty all over again with red breakouts.

Okay, enough whining about me. When I worked at a university, I heard from many students who had diagnosed celiac disease that they routinely “cheated” on their gluten free diets because 1) campus dining didn’t have gluten free food they could eat, and 2) it was easier to fit in than to stand out by advocating for medically necessary gluten free dining options. It broke my heart. Fitting in was more important than being healthy. Eating glutinous food with friends was better than eating alone in their dorm rooms. Can you imagine? Heartbreaking and infuriating.

Glad to say a little education went a long way: the university adopted a gluten free dining program on campus so students at least could eat safely and healthily with their friends. Those in charge had been reluctant to try GF dining for fear of losing money and having a lot of wasted food. Their worries were misinformed. The gluten free food options proved to be so popular with the general dining crowd they had to institute special controls to make sure the kids who really needed to be GF got the GF food first.

The major gluten free diet advocacy and education nonprofits the National Foundation for Celiac Awareness now have campus training and education programs and the gluten free living magazines and blogs (check out Gluten Free College Girl over on Tumblr) regularly feature gluten free colleges.  Even manufacturers are getting into promoting gluten free friendly colleges: Udi’s ranked the top ten GF colleges last year.   If you have a resource you want to share, please post it here!

So no, no cheating here, but thanks for asking! It gave me new GF food for thought and made me grateful all over again to have a choice about what I eat and don’t eat while I wait for the call from the gastroenterologist’s office with the date and time of my endoscopy. I’m ready to get rid of this GF (non-baby) bump.

You’ve Experienced an Event

Those were the words the study coordinator used when she called me yesterday afternoon to tell me I’ve qualified to move to the next step in the clinical research study. An event. When I use the word “event” I usually mean something with a fancy dress and snazzy high heels and if it’s a special enough event, some wildly patterned stockings. I think of hushed crowds readying to unleash rowdy cheers when the curtain rises or the ripple of excitement when the celebrated chef steps up to the cooking station or the wave of bodies suddenly moving when someone turns on the dance music.

No such snazziness or fanciness in this case. The event was the advent of pain. Lots of pain. The kind of pain that makes me suck in my breath and double over; the kind that makes me see flashes of white. That last one might go along with the neurological symptoms I forgot followed severe gluten contamination: headaches, muscle twitching and sudden weakness, waves of anxiety. Celiac disease causes lots of crazy symptoms. And then there’s that “exquisitely prurient” DH rash (which is a nice way of saying a rash that makes you want to rip your skin off). The blisters cluster on my forearms, shoulder, shins and knees. This time they are tiny and only a few itched so badly I scratched until I bled just a little. This means some new purple patches for my already scarred little legs.

I’ve officially cross-contaminated myself enough times to turn my GI tract into a war zone. This joyful news means they can embed medical photojournalists behind enemy lines for a close-up look at the  flattened landscape where thousands of villi used to wave busily in the gastric breeze.

Thank God. I didn’t have to resort to drastic measures like ingesting Dunkin Donut holes or kissing someone after they cheerfully chowed down on a chicken biscuit from the nearby fast food emporium.  I’ll admit both strategies crossed my mind but I couldn’t do either without feeling dirty.

So now we wait for the gastroenterologist’s office to call to schedule the endoscopic exam. And we stay contaminated and thus sick a little while longer. And then? Exam and healing! And a little more mango sorbet. Gluten free, of course.

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.

The Frustrations of Phone Six

I know I shouldn’t even talk about it, let alone complain about it. I’m incredibly lucky to get it at all. I can call anytime I want after 7 pm and there it is, or, rather, there she is, that anonymous woman with such precise pronunciation it makes me squirm a little in my chair.

But there we are, every night, her precise, pert voice asking me intimate questions about intimate bodily functions and I dutifully push my own buttons in response (1 for yes, 2 for no, 3 for moderate and 5 for very severe, etc.).

We’ve been at this almost a week now and I still look forward to the nightly calls. I’ve propped the prompt card against a votive candle holder on my desk/dining room table to remind me to pick up the phone and dance my fingers all over the dial pad.

The call should take only six minutes, the clinician told me on Tuesday. Maybe for most people it’s a quickie, but apparently not for me. Each call has taken longer and longer.

I start with my identifying digits: codes so she knows it’s me. Then we go through the routine of her asking me how I feel. It goes well until we get to question six. Six grinds her to a halt. She stutters, fails to understand me, asks me to do it again. And again.

Question six is, “During the past 24 hours have you experienced tiredness?”

She gets it when I respond, “yes.” Thank God. I hate it when someone assumes yes means no or doesn’t take no for an answer.

Once I answer “yes,” the second question comes: “How severe was your tiredness at its worst?”

I’ve tried “2” for mild and “3” for moderate and she says, “Your response was invalid.”

Last night, she asked, I answered, and she invalidated me seven times. Seven times! I tried going slower. I tried going faster. Neither worked. Whatever number I pressed, she declared it invalid.

By the sixth try my tiredness was approaching severe, so I changed my answer to “5,” but she rejected that, too. Argh!

“It’s the last question, lady; can’t we end this?” I pleaded into the phone. Of course, she only said, “How severe was your tiredness at its worst?”

“Twenty-seven!” I shouted at her, shaking the phone. Of course, I had to calm down. If we got disconnected, this entire session would be invalidated and I could get flagged for botching my entry which could kick me out of the study. High stakes, indeed. I took a deep breath and calmed myself.

On the next pass, I gingerly selected “2” and held my breath. Finally, finally! She said, “You indicated that your tiredness was a 3. Is this correct? Press 1 for yes and 2 for no.”

Resisting the urge to press “1” seven times–yes, yes, yesyesyesyes, yes!” I pressed “1” and she replied, “You have now completed all of the study questions. Please remember to call back tomorrow.”

“Yeah, and please remember to fix yourself, Missy, or I’m reporting you!” I growled back.

And then I heard, “Thank you and goodbye,” followed by a harsh beep as the system disconnected me. It wasn’t the happy ending I hoped for, but it got the job done. That would have to be satisfying enough for the night.

Let’s hope it goes better tonight. I’m more than moderately tired.