Heidi lines her kitchen table with a virtual pharmacy of prescription pill bottles; celexa for sadness, ritalin for restlessness, ativan for anxiety, depakote for dark downs and hysterical highs, unisom for insomnia. Each bottle tells a tale in Heidi’s life.
As an infant, Heidi was adopted by prestigious Southern Californians: a psychologist and his wife. She knows just two things about her origins: 1) her birth mother was very young when she had her, and 2) there was a history of diabetes in her family. That’s it – nothing more. No explanation for why exactly she was given up, who her father was, or if she had any more biological siblings. Very little information; lots of gaps and holes.
What she did have was a privileged upbringing- an estate with a view, the best schools, horse riding lessons, and…she was daddy’s girl. Her father worked long hours counseling clients out of a home office but always made time for special little rituals with Heidi. In the mornings they squeezed fresh orange juice together, sitting down at the table afterward with their matching glasses. Afternoons they walked the same path of their property together until it seemed that their footprints were a part of the landscape. At night he kissed her on the forehead and called her “butterfly”.
Heidi’s mother was more distant. Hugs were rare and felt forced. Approval was hard to come by. Warmth seemed reserved for her brother Ronnie, who came by way of another adoption when Heidi was three.
“I hated Ronnie for showing up, I bullied him. I called him all kinds of names. I would kick and punch him until he cried. It makes me sick to think about it now.” The rivalry escalated over the years and created a rift between her parents. “One day my mom actually looked at me and said, ‘Your dad and I used to be happy and life was easy. Having children ruined our marriage’.”
Sadness. The feeling of being unwanted: before her birth and also after.
So yes, Heidi was provided with opportunity. She attended the best private schools in Santa Cruz, with children of the other local elite. They had the freshest textbooks, the most ideal student-to-teacher ratios, artists in residence, and unique, challenging, courses. Where the majority of her peers seized these opportunities and excelled – whether out of self-determination or pressure from parents – Heidi failed and fidgeted. “Sitting in a classroom was the hardest thing. Fifty minutes seemed like waaaay too long for anyone to sit in the same chair”.
Heidi’s classroom routine was: bounce knees nervously till someone asks, “where’s the earthquake?”, drift off in space, doodle caricatures of her classmates, tap pen nervously and to the annoyance of others. Eventually she just stopped showing up to classes at all. “I skipped out with this angsty little group of rich kids, doing what kids do when they skip classes. We smoked pot, we drank in our parents dens, we stole stuff we had more than enough money for”.
All this absenteeism and trouble making led to a string of “fails” on her report card, a ‘Minor In Possession of Alcohol’ charge, the discovery of pot in her locker, and a bust for shoplifting. By the end of her freshman year in high school, she had been kicked out of one private school and two public ones. The last resort was an alternative setting for behaviorally and emotionally challenged youth. “Pretty much all the delinquents,” says Heidi, pulling out the year book from her sophomore year. Pictured within is a motley crew of kids sporting mohawks, heavy makeup, multiple piercings, and expressions ranging from vacant to brazen. “I felt more at home here- less weird. These kids were more like me. They had real reasons to be angry, real passions, and a real cause for rebellion.”
“The way I looked drove my father crazy. I think that was even harder for him than the trouble I got into. Like the trouble he could break down and rationalize as a psychologist. But the dad in him couldn’t deal with what was right in front of his face”. Their very last argument was, in fact, about eyeliner. It was a loud and heated one with a lot of mean words. It built slowly but ended abruptly, with Heidi slamming the door and driving away. When she came back it was bedtime but no one was at home. There was only a note on the kitchen counter. She can’t remember exactly what it said, but what the words amounted to was: her father was dead.
What followed? “Guilt- for years. Obviously. I mean I’d give anything for a better goodbye. Or wonder if he’d still be here if I had said goodbye.” Heidi wrestled with those- and other questions- until something came along to help in letting go of them: motherhood. “I realize as a parent that no matter how ugly things get, you love your kids and they love you back. There’s just no doubt”.
All grown-up and pulled together, Heidi is now a hardworking mother of two. Mornings are for packing lunches, braiding hair, walking both children to their classroom doors. Afternoons are for swimming lessons, Little Kickers classes, and playing at home. Four days a week, Heidi works the swing shift at a psychiatric residential treatment center for youth.
“I see myself in these kids. A lot of them are going through the same troubles that I was, the same emotions, the same confusion.” Though the work can be stressful and sometimes dangerous, Heidi thrives on the moments when she gets through to a client, providing them with hope that the future can be brighter. Underneath the happy veil however, there still lies a lot of worry. “I always feel like something bad is about to happen. Or, like something bad’s already happening, but I’ve forgotten what it is. I’m convinced, always, that there’s something wrong with me. Stomach cancer, brain tumor…something.”
Heidi has a close network of friends and they are always telling her that the only thing wrong with her is hypochondria. “They don’t say it meanly- they’re just honest, and they know better than to feed my paranoia”. But in the fall of 2009, things really were starting to go wrong in her body. “Working in residential, there are a lot of germs floating around. That fall and winter, I had strep throat three times and bronchitis twice. I was almost constantly on antibiotics. After that I started having a lot of stomach problems. I would bloat to where it felt like I was pregnant, and always felt tired or nauseous. My doctor ran all kinds of tests, looking for ovarian cysts and ulcers.” Looking for an ulcer meant subjecting herself to a stomach scope- the fifteen minute swallowing of a long tube with a miniaturized color TV camera at the end of it, allowing for close examination of the esophagus, stomach, and duodenum. The result: no ulcer. More tests and x-rays did reveal something unrelated to Heidi’s digestive troubles. She was found to have a benign tumor on her liver.
Dark Downs and Hysterical Highs
With surgery invasive, and the small tumor posing no imminent threat, her doctor advised a “wait and watch” approach. He also prescribed one Zoloft for depression. Through all those appointments, her doctor had picked up on a certain level of sadness that was leading to a lack of sleep and motivation, and a whole lot of hopelessness. “I went crazy with the first pill I took…literally. I could go days without sleeping, I was paranoid out of my mind. I’d always been anxious and nervous around people but now I couldn’t even leave my house”. She discreetly met with Human Resources at work. With her job protected through the Oregon Family Leave Act, she hunkered down at home for a six- week leave of absence.
“Those six weeks were a major roller coaster. Some days I was exhausted, laying in bed, crying over nothing. Other days I was filled with crazy energy – dancing around the house with my kids, talking hysterically and rapid fire, practically climbing the walls. Every night my mind was racing. I could NOT sleep…no matter HOW tired I was”. Over the course of those weeks she was slowly weaned off of the Zoloft and popping Unisom to get some ZZZ’s.
In the ten months since then, Heidi has been through a cocktail of prescription drugs, and accrued a growing list of labels: Attention Deficit Hyperactive Disorder, Bipolar Disorder, Anxiety. “I try not to take the labels on and let them define me. I see that too much in the kids at work. But I do know something is wrong with me, and I don’t want to feel like this forever.”
Convinced by a friend who has both Celiac disease and experience in the mental health field, Heidi has agreed to join the 6 week long gluten-free challenge. “I’m willing to try anything. I can’t deal with this anymore. The insomnia, depression, and mania are mostly under control but the anxiety is definitely not. That has always been a problem, and I feel like it always will be. It makes me feel insane. Truly. It limits my life in so many ways. So if changing my diet can help . . . yes, I will try that.”
Studies show a close link between celiac disease and mental illness, with three theories in explanation. One idea is that antibodies generated in response to gluten proteins can attack the brain. A second idea is that the gluten proteins themselves, or the peptides generated from them during digestion, are acting directly on the brain. A third idea is that your brain is affected by immune responses in other parts of your body. Celiac is an autoimmune disease; all immune activity sends signals to the brain to change behavior and to recruit a range of defensive responses.
Disturbances to brain function vary from routine effects such as sleepiness, fogginess, and brief episodes of confusion to symptoms of major mental or neurological illness. People with celiac disease may suffer for many years, and under varying labels, before the correct diagnosis is made. Most will have reported along the way that they never feel well physically; this will typically be attributed to psychosomatic fears. They will report periods of fatigue, difficulty concentrating, mental “fogginess”, extreme mood fluctuations, tearfulness, and irritability. Common diagnoses include: Attention Deficit Hyperactive Disorder, Major Depression, Bipolar or Borderline Disorders, Anxiety, and Schizophrenia. Fortunately, most patients will return to “normal” after fully transitioning toward a gluten-free diet.(1)
A family history of “psychiatric problems” is more common in patients with celiac disease. While Heidi does not have this sort of information on her biological family, she knows there was a prevalence of diabetes. She had her own brush with this during her first pregnancy, developing gestational diabetes. Like most women, her blood glucose levels returned to normal after pregnancy. She is, however, at greater risk for developing diabetes later in life and her son was, well . . . BIG. “Noah weighed 10 lbs, 7 oz at birth.”
Celiac disease and diabetes often occur together, at a rate of 10 to 20% in people with type 1 diabetes. By comparison, the rate of celiac disease in the general U.S. population is about 1 percent. Diabetes and celiac disease are both autoimmune disorders. Genetic links between the two diseases are becoming clearer, and it is thought that a malabsorptive disease such as celiac may create the opportunity for hypoglycemia. (2)
Taking a look at Heidi’s more recent health history, we pinpoint two things often related to celiac disease and gluten intolerance: 1) the overuse of antibiotics, and 2) unexplained abdominal pain and bloating, most often after the consumption of food containing gluten.
“My diet is pretty heavy in gluten, I guess. I eat what my kids eat; lots of pasta, sandwiches, cereal. At night when they’ve gone to bed I like to relax with a beer. I never thought of beer having gluten until my friend pointed that out to me. So, I think the food will be pretty easy to give up, but that nighttime ritual will be hard.” We sit down and make a list of “food alternatives”. Heidi agrees that it should be simple to switch the entire family to a gluten-free diet for the 6 weeks. She’s not at all overwhelmed by the idea of using rice flour bread and quinoa pasta. As for the beer, I show her a list of gluten-free varieties available at local grocery stores, and also present the option of drinking Hard Apple Cider instead. She decides she can do this.
Weeks 1 through 3
At the end of the third week of her gluten-free trial, Heidi is happy to report a lot of positive changes. “I’ve had more energy without a doubt. And have been sleeping better! It’s interesting. Usually when I was falling asleep I’d have this very strange, almost drunken, confused feeling. I’ve noticed in the last couple weeks that’s gone away.” Another thing that’s starting to subside is the stomach pain and bloating. “I do still have troubles on my work days. I’ve been eating at the cafeteria with the kids at work. I’m making sure to just go for the salad bar, skipping the croutons and sesame sticks. But it’s weird-every time I eat there I feel awful afterward”. We talk about the reality of cross-contamination. That can be a hard one for people to buy into; tiny traces of gluten can spread through the shared use of cutting boards, utensils, serving trays, and cooking surfaces. All it takes is one sesame size kernel of gluten to disrupt the system. This is of great concern, especially in a residential setting such as the one where Heidi works. “When we take a group of clients to the cafeteria, we mark attendance in a binder. The first page lists which kids have food allergies, and that’s something we’re supposed to keep an eye on. A lot of those kids are diagnosed with gluten and wheat allergies or full-on celiac disease! I know if I’m not getting a good experience when I’m being so careful about it, they aren’t either”. We talk about discrepancies in care. A client with an allergy to bee stings will never set foot outdoors without an EpiPen in the hand of a staff. Those with latex allergy will never come near it. There is some progress in the recognition of food allergies, but this is mainly relegated to peanuts.
Client care is a larger issue than Heidi and I can tackle. We can only take care of her. She makes the decision to bring her own packaged meals to the cafeteria, utensils and all.
Weeks Three through Six
Heidi has made it through six weeks of eating gluten-free amidst the challenge of balancing work, motherhood, and her own emotions. “Bringing meals to work was definitely the right choice. I feel much more comfortable with my stomach. Less self-conscious”. As for drinking, she says this has actually decreased with the switch to gluten-free beer. “I don’t know what it is, but I’m good at just one beer when it’s gluten-free. Maybe part of it is sleeping better? I don’t know. But before I would average two or sometimes three drinks in a night. Now it’s just one, or sometimes none”.
Heidi is not imagining things. Wheat is one of the most addictive things in existence. The wheat protein contains a number of opiod peptides which can be released during digestion. These may affect the central and peripheral nervous system, creating the same addictive attachment to muffins and pasta as to drugs and alcohol. This also explains why withdrawal symptoms are seen in individuals during their first days of going gluten-free – that “worse before it gets better” effect. (3)
Heidi is also greatly relieved to have lost about five pounds in the last six weeks. Weight gain is one of the more common side effects of Depakote, and while the medication may have leveled her moods out a bit, she was not exactly pleased with going up a pant size or two. On a less superficial note, Heidi has been able to decrease her daily use of Ativan. “Before the gluten-free trial I was taking Ativan up to five times a day. Pretty much first thing in the morning I would need it, then several times in the afternoon, and then definitely before bed. I wasn’t really even paying attention to it at first, but all of a sudden I realized I was taking less. Mostly only on really stressful workdays and sometimes still at night.” She is enthused at the prospect of decreasing or discontinuing other medications; after her traumatic experience with Zoloft, she knows to work closely with her doctor before making any changes.
The End (and The Beginning)
The question for anyone at the end of a gluten-free trial is: will you stick with it? The greater the results, the greater the chance that they will. Heidi is one of those people who has experienced some very positive improvement in both health and mood. She ends her six weeks with a commitment to carry forth with a gluten-free diet. “I feel closer to being “normal”, less like this crazy person walking around with a bunch of labels.”
(1) Lewey, Scot MD; Gluten Free Diet Should be Considered for Everyone With Neurological and Psychiatric Symptoms
(2) Vitoria JC, Castano L, Rica I, Bilbao JR, Arrieta A, Garcia-Masdevall MD: Association of insulin-dependent diabetes mellitus and celiac disease: a study based on serologic markers. 27:47–52
(3) Sephen Levine, PhD; The Nutrition Notebook: Food Addiction, Food Allergy, and Overweight