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.

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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.

The Lab Rat Time Warp

When I made today’s appointment on Monday, the coordinator cheerfully assured me the session would take thirty minutes, max. “Sounds good to me!” I cheerfully replied.

Today I discovered a secret power of the telephone. Maybe you already knew. Maybe I already knew, too, and just needed a reminder: the telephone can warp a measly half hour into a hairy hour and a half. Amazing! I don’t think the handset of the office land line had the power; rather, the power concentrated somewhere central, like the company that operated the telephone data collection system. It seems to work according to the same fun rules as a customer service line for a computer brand or a cellphone service provider: require as many keystrokes as possible to navigate from one question or decision fork to another, but be sure to truncate the keyed entry so the caller has to answer the same question seven times before the system decides to record the actual response.

This particular system was so cantankerous, it said my birth date was invalid three times before finally approving it. For a minute, though, I started to question my own existence.

Other than that existential angst, I took it all in stride. I had my e-reader with me and a very heavy sweat jacket so I was warm and entertained. The study coordinator, on the other hand, tried to throw the phone through a nonexistent window at least three times. To her credit, she persisted. Three calls to the customer service center of the data collection company, two visits to the company’s members-only intranet site, and probably several swigs of something highly caffeinated, and we finally got me registered as a test subject.

I now am subject %$@#%@#$%. Okay, that’s really my pet name in the mind of the study coordinator. I apologized several times for being the problem child and she said it wasn’t my fault. It really wasn’t. I never touched the phone. I was the problem because I was the one that took her an hour to register. I felt badly about it.

I couldn’t feel badly for too long because I suddenly was handed the phone and I had to create a PIN for myself in the system and then once in, I had to answer the same eight questions I will have to answer every day for the next twenty-eight days. Questions regarding the gross activities of my gut, levels of pain, and frequency of feeling like Violent Beauregarde after defying Willy Wonka and trying his new filling gum. 

The questions are standard fare for people with celiac disease. We’re always talking among ourselves about these indelicate matters, not to boast, but, rather, to soothe ourselves that we aren’t alone in the struggle to stay gluten free. Normal people raise their eyebrows when they hear of this, though they don’t really want to hear about this. And neither do we gluten free guys and gals, really. It’s just what we have to talk about when we aren’t busy conquering the world or feeling sorry for ourselves because we can’t pop down to Einstein’s for a toasted pumpkin bagel and autumn roast latte with gingersnap crumb topping . Ah, I do miss those bagels. I saw one on a sign and I could swear I started to itch.

So now I’m in the system and I’m ready to record my symptoms every day using a scale from none to very severe. I like that they differentiate “severe” from “very severe.” I would have termed it “feeling like road kill” and “envying road kill because they have it easier than this,” but that would take too long to say for each question and the system likely would time out before the subject could enter his or her answer.

On a very plus note, my labs look better than they have in years. I’m still “seropositive” for celiac antibodies but only just positive. The doctor said that means the gluten free diet has resulted in some healing. Woo hoo! Take that, road kill! I feel better than you do…today!

Passed The Tests for Certified Lab Rat

ABG Goddess
Earth Goddess at the Atlanta Botanical Garden

What wonderful news on a Monday morning: “Your blood tests showed you are diseased enough to continue in the clinical trial. When do you want to come in for visit two?”

Hooray! Of course, this means the gluten free diet has not been sufficient to halt the insidious damage to my immune system, which I must confess I suspected, given the number of times I get “glutened” in any given month. In lab rat terms, this is good news because I get to be one of 15,000 people nationwide who get to test this experimental drug to see if it, along with the gluten free diet, can improve healing, or at least minimize the damage.

In terms of my health, it is a bit disturbing to know that the symptoms I regularly experience mean I still am at high risk of developing cancer and having nutritional deficiencies and complications resulting from said deficiencies. Breathe easy: I’m not really in danger of developing scurvy, although I could break out in a rash of pirate slang, ye scurvy dogs! I’m a little anemic about these risks, but I remain optimistic that the ladder of successful healing is not rickety and any bone of contention I may have is not brittle enough to break under cross-contamination.

Why yes, that was a string of nutritionally deficient puns! Glad to know my funny bone still works.

Wednesday I go in to learn how to record every tiny morsel of food–including those pop chips as a morning snack–I ingest for the next six months and how to use the telephone log system to record the fact that I am not dead yet. After that, I get to the really fun pre-trial phase: the Magic School Bus episode where I swallow several yards of flexible tubing with a camera attached to the front of it so the doctors can enjoy a visual tour of the upper GI system, or as they called it in middle school: a trip down the alimentary canal. This will be my fifth or sixth or seventh–I’ve lost count–endoscopic exam. Piece of gluten free cake. I usually succumb to the “twilight” anesthesia and ask when the test will start about twenty minutes after the test is finished, but once I did not. I’m hoping this time I will resist the pull of the poppies and stay awake because the esophagus and stomach are quite fascinating things to observe through a purple haze. No, they really are.

It’s surreal to see the places you only feel when you’ve eaten too many hot wings. Wouldn’t you want to see where all the magic happens with your food? Sans food, of course. Maybe this time we’ll see that secret extra compartment saved just for dessert, or the cast iron lining that makes it possible to eat pickles at a park after a blackened shrimp po’ boy doused in Louisiana “ketchup” without bursting in flames.

For now, I’ll celebrate with a cool dish of Talenti Alphonso Mango sorbet, the frozen nectar of the gluten free, dairy free Earth Goddess (see above). Seriously, go try some Talenti gelato or sorbetto, Made up the road in Marietta, GA, using old Italian recipes and methods, it’s gluten free frozen heaven. Black Raspberry Chocolate Chip gelato or Cherry Amarena or Sea Salt Caramel…you can’t go wrong. Yeah, it’s $4.99 a pint in Publix or $4.69 at Target but it’s worth it. Raise a spoon in celebration of being sick enough to test a get-well pill, jagged edges not included. Salud!

Waiting Gluten Freely

I am waiting to hear what I hope will be good news from the research tech: “Congratulations! You’re labs show your guts likely are still being chewed up because you have high levels of all the celiac antibodies in your blood. You can advance to the next step in the study!”

Woo hoo!! I mean, really, who looks forward to getting the call that your blood tests show you qualify to join an exclusive group of people with a currently incurable autoimmune disease in testing the first possible treatment for said disease? Um, well, me, I do. Call me crazy. My mother always did.

I’ve been thinking about what the doctor said yesterday. No, not about me being too old to bear children. I’m thinking about what she said about having never had any “direct contact” with someone with celiac disease before now. “I’ve only read about it in my medical textbooks, which tell you about the clinical symptoms and lack of treatments except the gluten free diet, but I’ve never talked to real people who have it until now. It’s a really painful, difficult disease, isn’t it?”

Why yes, yes it it, doctor. Going gluten free means turning your entire world upside down, then inside out, and then rotating it another 65 degrees before baking. In my case, it meant dumping all of my pots and pans, prep utensils, and things like the waffle maker, pasta colander, baking pans, mixing bowls, stand mixer, and oven mitts because there is no way to ensure that after years of making standard food full of wheat, rye, barley and oats, they are 100% free of even trace amounts of paste or flour. That gummy stuff sticks in crevices and in the faint abrasions on the cooking surface. Haven’t you yanked out the old stand mixer and found some bit of cookie batter still stuck to the side of the mixer head or in the part where the beater’s tines are connected? I’ll admit I’m not the most patient and conscientious cleaner of my cooking equipment. I’ll give up after five minutes with the scouring pad and say, “Well, it’ll burn off when I pre-heat it next time.” So maybe not everyone has this problem. But even the dishwasher isn’t the most reliable at getting that last bit of gravy goo stuck where the handle meets the pot. 

Oh, speaking of the dishwasher, I had to get a new one of those, too. Haven’t you seen how left-over food particles bathe in the tiny pools of rinse water at the bottom of the tub?   Besides, it was ancient and I deserved a brand spankin’ new one to make me feel better for having such a lousy disease.

It turned out that I had to get an entirely new kitchen, too. I had begun peeling awful wallpaper off the walls–it was a badly faded pink and blue country print with tiny heart-shaped flowers so popular in 1988 when the house was built. We all deserve to consciously uncouple from the 80s, even people like me guilty of committing horrible fashion crimes with the United Colors of Benetton and Bradlees. That paper had to go and the walls had to be restored and painted cheery red and white.

Halfway through the project I was diagnosed with celiac disease and then discovered the wallpaper paste contained, you guessed it, wheat paste!

So I paid a kitchen remodeling firm a lot of money to finish the strip job and then refinish and paint the walls  and while I was at it, refinish the cabinets, replace the floor with this awesome vinyl plank product that looks like wood but isn’t  (and is eco-friendly with no off-gassing), put in new countertops and new lighting and a new sink with a new faucet, all to compliment my new gluten-free appliances (admit it, even your oven has some crusty remnants of last Easter, or maybe Thanksgiving, petrifying on the inside). 

But I digress. The entire gluten free lifestyle is expensive and challenging. I have to have gluten free food in a gluten free kitchen cooked by gluten free pots and pans and served on gluten free plates on a gluten free table. I only can use gluten free shampoo–check your shampoo. Does it say wheat germ oil? Oats or avena sativa, which is the botanical name for oats? How about s-amino peptide complex or phytosphingosine extract or hydroxypropyltrimonium or my favorite, stearyldimoniumhydroxypropyl? All contain gluten and God knows whatever else. I think they invented those names to give their little kid a hard time making words on the fridge with magnetic letters. 

I haven’t even gotten to gluten that hides in food, the stuff that gets into potato chips because they’re made on the same production line as wheat tortilla chips. Who-knows-what is on the production line of Crest’s Act mouthwash that makes the company tell inquiring customers with celiac disease that while the mouthwash does not contain gluten ingredients, it may come in contact with gluten during production and therefore is not safe for people with celiac disease. Maybe someone’s stirring the concoction with their hands after applying Jergens lotion. I don’t know. But they do say the Total Care toothpaste is gluten free. Go figure. Brush, but don’t rinse.

Thank goodness seven of the eight varieties of Chex cereal are gluten free and less expensive than the $5 a box Envirokids Gorilla Munch that also is gluten free and made with non-GMOs so I mix them in the bowl to make the munch wallet crunch a little less painful.

Having some cereal now with naturally gluten free blueberries and Silk Almond Milk while waiting to hear what the results say. If you like Chex too, have a gluten free bowl for me. Oh, and enjoy that $5 burger. Thanks to the two buck upchuck, I mean upcharge, for the gluten free bun, mine’s $7. Good thing I don’t like beef anyway.

Apparently clinical research trials require arctic refrigeration in case Frosty the Snowman decides to arm wrestle the placebo effect. This was my first visit as a potential clinical research subject for a phase two double blind study of a potential pharmaceutical treatment for celiac disease. I’m shivering, which could be a combination of excitement—if this treatment works, it’ll be a game changer for millions of people like me—and anxiety—no guarantee I’ll be selected to participate after the screening because I might be too sick…or not sick enough. Then again, I’m probably shivering because I just saw a polar bear saunter by. This place is freezing.

After one hour of answering more than a hundred questions about every part of my anatomy, some standard but some a bit embarrassing, my toes felt rooted on an ice floe. Nevertheless, I cheerfully rolled up the sleeves of my sweater to present my veins for inspection and selection. The technician and I both peered at the inside of my elbow: lovely and pale without a trace of blood bearing duct work.

The tech said, “Oh, no! Where are your veins?”

I wanted to say, “They flew to Barbados to defrost. I’ll let you know when they return. In the meantime, let’s go skating!” Instead, I briskly rubbed my arms to try to coax just one vein out of hiding. It worked. A little blue vein shyly appeared.

It took three stabs at success. Three stabs, three butterfly needles, six alcohol wipes, four pairs of gloves, seven gauze pads, a yard of tape, and two technicians to collect enough blood to fill three small vials.

And then my fingers turned blue. Literally turned blue, thanks to the extra tight elastic tourniquet left on my upper arm while they tried to suck the blood out of my veins. This was a startling shade of blue with red undertones, rather patriotic extending from the dirty cream flatland of my palm. I calmly alerted the technician to the Technicolor state of my appendages, who didn’t take me seriously until I bent my arm to try to show her.

She immediately yanked the elastic tourniquet off my arm and said, “Don’t bend your arm. It interrupts the blood flow.”

I laughed out loud. I had to because the blood began to squirt into the test tube as soon as the tourniquet slithered to the table. It took everything I had not to say, “Oh look! The blood flows again like thawed snow down a starved mountain in March. We’re saved!”

With three vials filled, they removed the needle and slapped a bandage over the gauze square on my arm. I began shaking that arm to restore normal circulation while the techs finished labeling the vials and cleaning up the small mountain of used medical supplies. The techs then apologized for brutalizing me as they backed out the door and said the doctor would be in shortly to perform a physical exam.

I retreated to the chair in the corner of the room, out of the vortex of polar air whooshing from the air duct in the ceiling. I rubbed my arms to warm myself and to push the blood back into my fingers.

The doctor must have been observing from a secret peephole because she didn’t come in to perform the “physical exam” until my fingers looked less like blueberry parfaits and more like slivers of shortbread cookies. The “physical” lasted five minutes and consisted of me being felt up with my clothes on. Apparently no organs were atrophying or ballooning in my abdomen and my arms and legs bent at the proper angles.

I wanted to ask how my intestines sounded through the stethoscope (I’ve already heard the air whoosh in and out of my lungs) but I didn’t think that would fall under the part of the fifteen page “Informed Consent,” well, form, that said lab, endoscopic and other test results would be shared with me. Too bad, it could have been fun listening to gastric juices sluicing through yards of gastric piping.

Ninety minutes later the doctor asked if I had any questions and if I thought I would be able to comply with the demands of the clinical trial: up to 26 weeks, multiple blood draws, two endoscopic exams with sedation, daily recording and reporting of all foods I consume, taking the study medication three times a day without fail, skeins of reporting yarns, and braving the Perimeter Mall area traffic to get to and from the test office. I solemnly swore I could and would.

And then she said casually, “Oh, and you have to take birth control. We can’t have any risk of pregnancy, though you’re probably too old for that anyway.”

“Well, not actually too old..ha ha…that change hasn’t happened…but (cough) yes, too old for any sane person to attempt that medical miracle,” I smiled weakly.

Ah, clinical directness sans any semblance of manners. Yep. Now I feel like a real research subject. Looking forward to the second visit!

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