Category Archives: Uncategorized

Ten Lessons Sans Carols: #3 The Family Fonz

WriteMeWell

Ah, family. It’s the unit that nothing trumps in importance. It’s the unit into which you didn’t choose to be born but to which you always are connected. It’s the unit that’s thicker than water (its blood, anyway), the unit that measures success in terms of what it’s done for you and failure in terms of what you haven’t done for it. It’s the unit source of the genetic weaknesses causing your chronic illnesses (including celiac disease) and the genetic code for why you have/don’t have a widow’s peak or a hitchhiker’s thumb or blue eyes and red hair. It’s also the unit that psychologists use to explain who you are and how difficult it will be to fix you.

I love my family. My family is awesome, especially my Dad, who for decades has suffered the burden of being Henry Winkler’s doppelganger. Back in the seventies, people would chase…

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Personal Best

Love this beautiful, brutally honest post from Stickler, so I had to share it. Hope it speaks to you, too.

Stickler.

A belated New Year’s resolution post 

I took the GREs on Monday and they turned out exactly like I expected they would: my verbal score was nearly perfect, my math (excuse me, “quantitative reasoning”) score was absolute rubbish. It told me nothing that I didn’t already know but I was still disappointed.

It did force me to make a belated New Year’s resolution, one that has been rolling around in my brain for awhile but I have only recently been able to put into words. It’s pretty simple but it’s also really hard: stop comparing myself to everyone else. Or, maybe just do less comparing myself to other people, because I’m not sure I can go cold turkey.

I’m naturally competitive, in a way I truly think sometimes I have no control over. Play a board game with me and you will see what I mean. I know it’s a…

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Taste Test While Patience Tested Waiting for Test Results – Sweet Potato Popchips

Testing and tasting and waiting: describes the last several days to a t, or T!

While I wait to hear if I made it into the next phase of the clinical research trial or not, I’ve been reveling in the GF tastes of fall. For me, nothing says fall like sweet potatoes, pumpkins, and the spices that enhance them: ginger, cinnamon, coriander and traces of cloves.

I love Popchips in general. They deliver great crunch and potato flavor without all the fat found in regular chips. I think the potato flavor tastes better than baked Lays, which remind me of Pringles, a childhood delicacy that isn’t gluten free, at least that I can find. The basic Sea Salt variety tastes better with hummus than crackers or pita chips, I think.

Sweet Potato ChipsI discovered the sweet potato Popchips last year in the Halloween aisle at Target. They aren’t in that aisle this year, but they can be found at Kroger and Whole Foods, which I discovered when I went to the Popchips website and entered my zip code in the store locator. You can discover purveyors in your locale using the locator, too. We picked up six bags for us so we didn’t have to make frequent grocery shopping trips to a store that’s not our go-to food emporium (thank you, David!)

These chips taste great by themselves, I think, but they also are fabulous with light cream cheese dip or spread, and are crunchy companions to a steaming bowl of creamy fall soup. They taste lovely with Applegate Farms‘ GF roasted or herbed turkey breast lunch meat. I’ve put a sliver of meat onto the chip and then crowned it with a dab of homemade cranberry sauce for a protein and vitamin packed snack or fancy, no-cook appetizer for a game night party. I’m toying with the idea of crushing them to make crumb coating for chicken tenders. A cranberry barbecue or mustard dipping sauce would compliment them nicely, I think. I will let you know!

Tiresome Tiredness

It’s taken me four days to recover from what’s billed as a minor procedure: the upper endoscopic exam with biopsies. It might be a function of being forty-something more. It also could be a function of how stressed and tense I was for at least two weeks prior to the actual procedure coupled with how busy I was for those same two weeks which equals not enough sleep which clearly equals prolonged recovery period. It also could be a function of the anesthesia.

Weirdly my “gluten rash,” aka dermatitis herpetiformis (DH) flared post endoscopy. I wonder why. Maybe I really did get glutened from that table at the coffee shop I visited Tuesday AND Wednesday pre-endoscopy. Maybe the stress of the procedure aggravated the condition. In any case, I wanted to scratch the skin off my forearm, knee and jawline. I thought about taking pictures of the flare and posting them here but it’s not Halloween yet and I don’t want the reputation of being an ick-pic chick. That would be very tiresome, indeed.

Celiac disease in general can be tiring. It takes 4-7 days after getting glutened to feel normal. The inflammation in the gut I imagine requires extra energy at the cellular level plus it blocks absorption of nutrients which also leads to fatigue because I’m not getting nourished. And, being stubborn, I usually try to fight through the fatigue rather than using it as the nature-given prescription for extra viewing of Bravolebrities on Bravo’s “reality” shows. If I just spent a day in bed or on the couch I might recover faster but I feel guilty about resting when I’m not “really” sick. Yes, I still fall prey to that irrational and dangerous thinking. I don’t have a fever, I’m not coughing up anything, I’m not gushing blood, I’m not hospitalized so I’m not “really” sick. It’s stupid, I know. autoimmune diseases like celiac disease are no joke, even if South Park thinks they are.   I’m also building my own business so if I don’t work, I don’t make money and if I don’t make money, I can’t buy gluten free products.

So, here it is Tuesday and I’m still tired. I think I might take a nap sometime today, after work. Or before. Or maybe in equal measure. We’ll see!

Dangers of Napping

I want to be a napper. I probably need to be a napper. Every night when I hear the last question of the research trial’s daily “celiac symptom diary,” I wish again that I had taken a nap. I’m always tired. The diary, though, isn’t dichotomous. It’s not “were you tired today” (yes or no), or even “how tired were you today,”  but, rather, “how severe was your tiredness.”

It’s an odd view of tiredness: rating its severity. I’ve rated the severity of colds, the severity of pain, even the severity of consequences, but the severity of tiredness? How severe does tiredness have to be to rate “very severe” or 5? Would that be the kind of tiredness that smacks you prone in the middle of a grocery store?  Or maybe it’s the kind of tiredness that makes it impossible to get out of bed at all. And what is “moderate” tiredness? That’s what I rate my tiredness much of the time. Too much to ignore but not enough to render me useless. I treat it with increasing caffeination, which simply masks the symptoms without treating the underlying cause. I know.

Which makes me wish I successfully could nap. The problem with napping for me is that I rarely get past the state that causes my arms and legs to twitch and my brain to slide sideways, which jerks me awake. It’s that state of not being relaxed enough for the brain slip out of control but being relaxed enough that it tries again and again to surrender, only to be yanked back to work. I finally give up after an hour and get back up, feeling no less tired and a lot more annoyed.

On the rare occasion I do fall asleep, I have wild dreams. My brain flings open the technicolor paintbox, pulls all the costumes and props out of the closet, and then romps uninhibited from stage left to stage right to the windows to the walls to really off the wall.

Dreams follow one of two paths. Either I’m being threatened or I’m being ravished: horror or erotica, those are the two genres.  Don’t ask me why. I am sure this relates to past traumas or repressed desires or past repressed desires, or medication, or my diet, or something like that. I’d nap every day if I could guarantee the erotic bent of my mind’s sleeping eye, but it doesn’t work that way. There’s no readily apparent correlation between what’s happened during the day or the night before and what happens in nap dreams. What I watch on television or read in a book also doesn’t seem to influence the next nap dream. If it did, I’d pack a side of Anais Nin’s writing with every lunch. It certainly would be a nice payoff for the fatigue of playing dodgeball with gluten.

Now, if gluten was the culprit, I’d consider sneaking it into my diet from time to time, just for the sub-REM siesta thrill, but my dreams don’t seem to connect to my gluten-free or gluten-contaminated chemistry. Too bad.

If the X-rated dreams could, in fact, be linked to being gluten free, people would flock to the gluten free diet like cats to cans of just-opened tongol tuna. This could be my big contribution to science! I get excited just thinking about it, but before I prematurely postulate, I’d better sleep on it. Just to be safe.

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.

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.