Celiac- Look Closely at What You Cannot See

FICTION- by: Dr. Desiree Jabin She is a psychologist familiar with how divorce affects children. Surely, her doctorate combined with her "mom card" meant that she knew how to stave off the descent of psychological problems that accumulate along the horizon like a foul and ominous storm. The advanced degrees and certificates that adorn her office walls like wallpaper announce this fact to all who see them. Her diplomas served to warn any "fates" away from tightening the ropes around her children in a way that squeezes out all that is joyous and otherwise fondly memorable about early childhood. With the unison of a symphonic cacophony in Latin, her diplomas blazed a warning declaration that she is a mommy whose own children’s lives shall never resemble the statistics describing the tattered lives of other folks' children from broken homes. Gina was determined to actively monitor her kids' developing psyches for any of the text book, tell-tale signs of emotional distress. She spent most hours of the day with them or near them, volunteering daily in their school classrooms, accompanying them on field trips, even going grocery shopping together. She fully participated in her role as mother as the three sought to carve out new meaning, definition and enjoyment despite the obviousness of the missing family member. Wes’s empty place at the table begged explanation far beyond the tender years of the kids’ experiences and too convoluted for Gina to easily explain away. The more Gina feared the Fates were plotting to destabilize her family the more she dug in to provide stability, reassurance, and reinvent a comfortable new normality. Gina detested cooking. During her marriage to Wes she almost always managed to avoid cooking by penciling this chore under her now ex-husband's detailed job description. This “trifecta reconstitution”--- Gina, her seven year old son, James, and nine year old daughter, Rose -- put cooking back on her own list of "to-do's." Gina would simply reinvent the dinner-hour post divorce. No more eating at the table where Wes’s abandoned chair taunted the three of them with memories of happier and simpler times. Sometimes the chair seemed to invite a guess as to Wes’s whereabouts. Occasionally, the chair seemed to grow larger and take up more floor space than any other piece of furniture in the dining room. Gina soon realized the kids and she could eat out more often together without losing the “value” of the dinner hour -- the family meal that experts say matters most to those desirous of raising emotionally healthy children. Four or more days or nights a week Gina took the children out for Italian food. They ordered heavily breaded appetizers, pasta, pizza, garlic bread. Dessert was always in store for the kids if they ate their entire dinner -- the three of them especially savored good Tiramisu and chocolate chip cookies. She found herself buying more frozen foods to make after school snack time easier on her and more enjoyable for them. On most weekdays during their school year Gina skipped eating lunch apart from them in favor of joining them at home for snack time after school. To her credit, Gina was wholly committed to providing them consistency during meal times with extended hours of hands-on, “mommy time.” This time was spent by debriefing each other on the day's high and low points. Rose would say, "Mom, high and low -- go!" Gina would start first by detailing the best part of her day -- the high, and then finish with the worst part of the day -- the low. James would go next and Rose would finish by filling in the events from her day in similar fashion, completing the game. Gina played this simple game with them because it cleverly accomplished several things. First, it gave her a window to crawl through and learn about their internal experiences and mental inner workings during encounters with others as they navigated the features of their external environments. Second, listening to the kids decompress from their school days drew Gina into their lives with a weighted importance that she cherished. It proved to her that they were still young and innocent enough to allow her to play such a contributory part in their day to day affairs and musings. Kids grow up so quickly, and kids from divorced parents are often catapulted into taking on more grown- up roles earlier than preferable in an altruistic perfect world. Professionally, Gina refers to children who are thrust into roles they are ill-equipped or unprepared for, without a buffer or proper role-modeling, as becoming “parentified.” Kids such as these become “mommy’s helper” and “mommy’s big boy” far before they can embrace the magnitude of the shift. Personally, her efforts were designed to bridge communication and connect them in structured and healthy ways. By staying actively engaged and emotionally available to her children, Gina was able to prevent the “parentification” that befalls too many children who are rudely ejected from the softness of childhood and coldly immersed in the unpleasantries that await them in “the real world.” Always calculating to thwart the “fates,” Gina used this time to reinforce how much she loved her two children. When answering the questions her daughter posed to her during their nightly game her response was unwavering. Gina always answered that her high was seeing them after school or being in the present moment with them. Eventually, the game’s consistent reinforcement of her love for them evolved from the planting of seeds to the eruption of thick and viable roots occupying the darkest recesses in their developing minds. The day arrived when Gina’s kids would recite her answer with her in sing-song rhythm. During this post divorce “check” point, Gina felt being a single parent was coming along better than is typically seen amongst the "broken home" demographic. Gina congratulated herself on her own brand of the “care and feeding” of a high emotional IQ. So much so that professionally she decided she could no longer counsel couples because she, like a pendulum, had swung so far as to become pro-divorce. At the very least, she seriously contemplated putting a warning label on her forehead that read, “Anti marriage, pro-divorce” to serve as a cautionary descriptor for couples teetering on the edge between separating and rekindling. When it came to an after school “quickie meal” for the kids, Gina’s favorite ready to eat snack after two minutes in the microwave was dinosaur nuggets. Basically, these breaded and frozen chicken "treats" allowed her the freedom from cooking while at the same time supporting her desire to become a doting and kitchen-capable mother. An additional perk to Gina was that these “gourmet” breaded chicken dinosaurs allowed her to maintain cognitive dissonance from actual fast food places. Wheat thins, sliced gourmet cheese, cashews, and different combinations of fresh fruit provided quick and healthful snacks for the three of them. James and Rose knew less fortunate children whose mom’s took them to the types of drive-through chains that have become memorialized as part of the fabric Americana. The divorce had not been Gina’s decision. True, she threatened it often but she was never the one who actually pulled the marriage off life support and wrote Do Not Resuscitate. The years of tumult had eroded the marriage, reducing it to a loveless facade. Gina and Wes were merely a cardboard cutout of a couple versus being warm-blooded, passionate lovers. Staying trapped in a marriage devoid of happiness is thought my many experts to be better “for the sake of the kids” than divorcing. Television and radio talk show psychologists berate callers who discuss filing for divorce when young children are involved. “WAIT until the children are 18 years old before you leave!” they shout with venom and hostile aggression at unsuspecting callers for all of America to hear and take heed. During one of Gina’s regular meditations she allowed her mind to play free association with the word "divorce." One time, while in a near hypnotic state she conjured up the following adjectives, modifiers and descriptors: failure, poverty, damaged, stepparents, suicidal, laughingstock, broken heart, lawyers, bills, custody, visitation, traumatized, and many others equal to or exceedingly negative in value. The threats of divorce were meant to more closely resemble a Defibrillator, shocking the ailing marriage back into a romantic rhythm. It was Wes who dealt their marriage the death blow. Rose, James and Gina had their own equivalent of a "honeymoon" phase shortly after Wes moved out. The kids received her full attention, completely uninterrupted by the "cold war" that characterized the dynamic between their warring parental units. Gina was happier, more emotionally available to Rose and James, and even more approachable than she had previously been when arguing and hostile thinking towards Wes consumed her mentally, physically, spiritually and emotionally. Gina was freed up to play, cuddle, and read bedtime stories. As the newness of divorced life settled to take a shape of its own, it ushered in new routines, traditions, and expectations. The warm fuzziness of familiarity was reborn and the three members of the trifecta had perfectly renegotiated the family's group dynamic and roles therein. The only hiccups in this seamless configuration occurring when her daughter, Rose, failed to stay within the confines of her purview. Gina knew that little girls go through a "bossy pants" phase, so she added extra latitude and widened the parameters of the "lanes" Rose was to stay in. When Rose’s tone with her littler sibling, James, was particularly harsh Gina gently reminded her to "stay in her own lane" and not get too far into "the mommy lane." Gina let her know that she appreciated Rose’s “thoughtful input,” but at the same time she told her not to "take my mommy job from me or I won't have any job to do." As if it were a business meeting, Gina gave the kids a revamped "job description" list. Her aim was to help the kids see their appropriate roles within the family system, identify inappropriate roles (such as Rose parenting her brother, or little James trying to be the man of the house), and reassert her own power over the rest of the triad. Due to Rose’s natural inclination as a leader she stepped on Gina’s toes no matter how much Rose was gently directed not to, and finally demanded, she not continue to do so. As the honeymoon phase was ending, it became like a worn-out blanket no longer able to keep out the biting cold. This newer phase that Gina, Rose and James entered allowed the harsher light of day to pour in too quickly -- flooding and pooling in an unkindly way that illuminated all the cracks, holes and flaws which the blanket had been absorbent enough to swallow up. Life’s messiness was no longer easily contained or promptly cleaned up. Gina sensed an emotional tsunami lurking not too far off the immediate radar, threatening to unleash a downpour that would summon the “fates” upon the trifecta. James was now eight years old and Rose was ten. Gina’s best efforts at staving off Rose’s parentification failed miserably. Rose thrived happily in her own eked-out niche as James’s second mother. Rose’s aggressive behavior created an antagonistic relational dynamic between mother and daughter. The implication for Gina was that her own authority was being usurped due to Rose finding her unfit to mother on some level. Gina expected this type of tension when Rose was older -- say around 15 or 16 years old -- but Rose became an enemy combatant far earlier and reminded Gina of tormentors she had known previously in life’s earlier decades. Rose’s refusal to “stand down” and just be a kid on equal footing with James, versus an equal to her mother --or superior -- unraveled Gina, who now had to place herself in time outs before correcting Rose’s behavior. Eventually, while meditating, Gina realized that there was an underlying personal issue fueling the increasingly bad chemistry she and Rose were encountering. As the youngest child in her own family of origin, Gina realized some enmeshment issues existed between herself and her youngest child, James. This meant that when Gina suspected Rose (the oldest child) was treating James (the youngest child) unfairly, Gina became anxious -- scanning the environment with the type of hyper-vigilance usually reserved for PTSD symptomology. Gina noticed James becoming more irritable and quick to tears. He began having night terrors, his thinking was “foggy,” he had painful gas, stomach cramping, diarrhea, bloating and complained of feeling nauseous. The broad spectrum of his symptoms was increasing in chronicity and severity. Gina’s work experience led her to conclude that James was exhibiting behavioral and physical symptoms as a result of stress from the divorce. There are two very important things Gina learned about being a mother and about being a psychologist. The first thing she learned is that she should never be her own kids’ therapist. Attempting to be her kids’ therapist would be an inappropriate dual role spawning adverse ethical outcomes for all involved. The second thing she learned is that a psychological diagnosis should never be given before, or until after, a physician has ruled out a physiological diagnosis. These two caveats would prove to be the most important things of Gina’s career as a psychologist, and more importantly, her “mommy” career. James was screaming so horrifically on the toilet one particular evening after dinner that Gina decided to schedule a medical appointment for him the next morning -- keeping him out of school to accomplish this. With a doctor’s note the absence wouldn’t count anyway and she felt his need for an MD outweighed whatever he would miss in class that day. By 10:00 o’clock the next morning he had developed new physical symptoms which, to the physician, were “red flags” for appendicitis -- however, he lacked the usually present constellation of appendicitis symptoms, such as vomiting and fever. James gave blood and urine samples after which, mother and son were sent over to the hospital lab for MRI scans to rule out the direst of possibilities. After the primary care visit, Gina and James spent an additional five hours that day having a battery of tests run, thanks to the great health insurance she carried for him. The two went home and waited. A week later, Gina was checking the mail when she noticed a postcard from James’s doctor’s office. On the back of the postcard, the lab tests stood out for all to view -- like the post office, postal carrier, and any of Gina’s neighbors who could have mistakenly received the postcard in their own box! The ominous results publically declared that James had tested positive for Celiac Disease. This was in 2009 and Gina had never heard of Celiac Disease. She was certain it meant he had a lethal and advanced form of childhood cancer. Gina almost passed out from hyperventilating as she ran inside to conduct an internet search on how long she and Rose had left with James. Gina’s heart raced wildly inside her chest, loud enough for her to hear it on the outside without a stethoscope. As she pounded the letters --C E L I A C D I S E A S E into her keyboard, Gina cried and ruminated on the inequity of it all. She pondered the “hows” -- how this could be happening to them. Gina learned that Celiac Disease is not Cancer at all. However, a very stringent diet must be adhered to as consuming gluten can lead to intestinal Cancer and other maladies over the course of an entire lifetime. No longer could Gina shop for breaded chicken-dinosaurs, chocolate-chip cookies, or Wheat Thins. Gina would have to learn how to cook, they would never eat in restaurants again, and everything was suddenly very overwhelming and appeared to be too tall of an order -- but, she would do it and she would somehow make it work. At that time there were seemingly few palatable gluten-free options for James. Gina needed to find out if there were other gluten-intolerant sufferers on the planet, how they did it, and how she could manage this for her eight-year old son. The happiest coincidence for Gina’s family occurred when right after James’s Celiac diagnosis a gluten free movement swept California. The gods of fortuitous timing seemed to conspire with the stars in the heavens enabling Gina to get the “memo” that everything would work out after all. She would not be tasked with the Herculean feat of learning to cook nor would James have to die from starvation. Today, in 2014, Gina knows now that many folks do not appreciate the swift marketing ploys that swept across the nation -- similar in scope to the low-carbohydrate movement -- bringing delicious already-prepared and easy to prepare meals to every grocery store chain in America. She reads blogs written by members within the Celiac community who either have the disease themselves or, like her, have loved ones struggling with tough dietary issues. Many such bloggers have become experts themselves who post gluten-free recipes online, share information about restaurants that cater to their special dietary needs, and promote ways of ensuring a gluten-free lifestyle to those who medically require it. Backlash against the corporate-greed -- both bolstering and exploiting an anti-wheat paradigm shift -- has become evident in the blogs. Those suffering from gluten intolerance feel transgressed by manufacturing-ploys marketing to consumers in a way that makes being gluten-free faddish. Junk food campaigns appear to minimize the Celiac sufferer’s lifestyle to pure choice, vanity, or the newest way to lose weight. However, for Gina, being able to give James gluten-free treats like cupcakes and cookies means that he can participate in the birthday parties his classmates have at school. The abundant availability of gluten-free pizzas and pastas to a boy like James means that he can enjoy the end of the season baseball parties with his coaches and teammates -- he can merrily join in the fun that little boys his age deserve to have. He doesn’t have to be ashamed of his intestinal differences that would otherwise force him off to the sidelines or curtail his ability to play baseball altogether! Oftentimes, Gina brings gluten-free dough to the pizza parlors so that special order pizzas can be made just the way James likes it -- with the same toppings his friends are all enjoying. No one has to be the wiser, although most of his friends and all of his coaches and teachers know he has Celiac Disease. There was one teacher who rewarded the efforts of James’s entire class with a school pizza party by ordering them all gluten- free pizza. There have been a few birthday parties at school where the teacher brings gluten-free goodies just so James can be included in the festivities. Holiday celebrations at school are other instances where James’s diet restrictions are at the forefront of a compassionate teacher’s thoughts. Gina is often notified ahead of time so she can supply treats to the whole class, or just to ensure that James has a gluten-free item with him for the party. There was a time when these opportunities did not exist and James would be excluded or feel deprived on some level. Now, when James goes to overnight summer camps Gina can select “special diet restrictions” on the medical forms and waivers without being panic-stricken. Most away camps now offer parents like Gina gluten-free menus so she can circle several meal options for her “special needs” camper. Wes’s chair, all the chairs in the dining room set, and the dining table were all donated to charity. Chairs that no longer taunt or serve as cruel reminders now occupy one of the most lived in rooms of the home. Four friendlier chairs serve this newly reconstituted family of four -- James, Rose, Gina and Alby. The white walls in the dining room always felt too sterile, cold and clinical -- mirroring Gina’s earlier hand’s-off approach to cooking. Alby, the general contractor whom Gina ended up marrying is great at cooking nutritious and tasty meals for the family. Alby painted the dining room a periwinkle-blue which adds depth and warmth -- qualities his presence in the family and fondness for cooking impart. The weekends are especially fun because each member of the family helps in the meal preparation and presentation. It is a collective effort and all participate with military precision and finesse. Alby is a reservist in the Air National Guard, a First Sergeant, so there are times when Gina is left to “cook” for the kids. Fortunately for James and Rose, Alby usually leaves Gina with enough food to reheat for the three of them while he is deployed. Occasionally, however, it becomes necessary for Gina to visit high-end, smaller markets that stock “really special” gluten-free frozen food. Gina is able to purchase gluten-free fish sticks, chicken nuggets, corn dogs, pizzas, glazed doughnuts, muffins, and anything else for which there is a non-gluten-free “twin.” Gina has learned so many things about Celiac Disease thanks to this unintended journey. Before James’s Celiac diagnosis, Gina lacked a meaningful context to understand why James broke his collar bone while playing soccer. The extent of his injury was a shock because the fall did not seem too bad. Gina could not assemble the fragmented parts in a way that illuminated the whole picture. It was like trying to put a 10,000 piece puzzle of the sky together -- nothing stood out, everything blurred together and overlapped without borders. No matter how closely she scanned for clues each piece seemed endless as well as finite. Each piece of the puzzle looked like it could belong anywhere -- and nowhere. The closer she looked for cause and effect the more her concentrated efforts failed her. She examined each of the 10,000 pieces closely – still, she could not see his Celiac. Prior to his diagnosis, James caught more colds and had the flu more often than a healthy person ever should -- a puzzle piece. Gina didn’t know that his body was failing to absorb vitamin C because she didn’t yet know anything about Celiac. In fact, it is almost unheard of for a child under two years old to get Strep but James did -- a puzzle piece. More puzzle pieces -- James went to the emergency room by ambulance with a fever of 107.2. In 2002 he caught Scarlet Fever. In early 2009 James caught H1N1, or the “bird flu.” After the Celiac diagnosis the picture came alive in Technicolor clarity. The effect of the diagnosis served to put numbers on each of the 10,000 puzzle pieces. Everything fell into focus and the pieces assembled themselves. She could now clearly see his Celiac. James came down with Chicken Pox even though he had been vaccinated against it -- no longer puzzling. Celiac Disease means that James has a compromised immune system making him more susceptible to everything going around -- 10,000 pieces of the sky all properly placed. Now, Gina understood that James was consuming a gallon of milk every two days because his body was not absorbing the calcium efficiently and would never be able to unless gluten was entirely removed from his diet. Events such as this would now register on Gina’s radar as James’s skeletal system becoming fragile due to his body’s decreased ability to absorb vitamin D properly. Celiac disease weakens bones by making them more brittle -- sufferers have more broken bones than their non-gluten-intolerant peers. Today Gina knows what blips on her radar are the real threats to keep in her cross-hairs as she parents a gluten-free child. Namely, she has to read every ingredient before James can eat something new. It means going to great lengths to avoid cross contamination since gluten is the enemy and can wipe out the health of his gut. His brain seems healthier now too. He never had a psychological problem but “leaky gut syndrome” resulting from an allergy to gluten can imitate psychological problems. Gina is thankful that she never allowed a mental health clinician to slap a diagnostic label or medicate James for ADHD and other psychiatric disorders that leaky gut symptom can appear to be. Still, Gina often wonders about those children whose parents remain unaware of the real culprit behind their own children’s “unwell-ness.” This is especially the case when she reads of the alarming frequency with which newly minted diagnostic labels are assigned to children -- who become mere patient records filed in a quagmire-like labyrinth with little regard for their individuality as people. It should not be so easy for the psychiatric community’s disorder de jour to begin a lifelong journey with a small child. Gina smiles at James who is thriving. Rose pulls out the gluten-free cookie dough that she will bake -- and all will enjoy -- when Alby returns later tonight from a weekend deployed with the Guard.