By Mary Green
Seldom does a life-changing moment happen so arly in life. For Luke Castellano, the tide turned at the very tender age of 12 months. However, in his estimation today, a diagnosis of type 1 diabetes was (and is) simply part and parcel of his life’s fabric.
His own words speak volumes about his perspective. In a 2012 class autobiography assignment, he wrote:
“I live every day like it’s my last, because I’ve lived and survived some life-threatening challenges. Diabetes has made me a very strong person, and it also helps me to stay very healthy. I am always trying to stay on a good diet to maintain good blood sugars. I prick my fingers five to six times daily to calculate my blood sugar and inject myself with insulin to cover my food intake. It is hard, but it is a challenge that I overcome every day.”
According to mom Rebecca, Luke’s unexpected diagnosis came after several weeks of particularly messy diapers, vomiting and lots of pleading for more juice—signs that caused the trained nutritionist and new mom (of fraternal twins, no less) concern that was subdued temporarily by a conversation with the family pediatrician. “He diagnosed Luke with a bad stomach virus and directed me to give him ginger ale and juice,” she recalls. Matters came to a head only a few days later.
Seeing no improvement in her first-born, Rebecca rushed Luke to the area emergency room, where doctors discovered the toddler had lost 25 percent of his body weight in two days and was down to 15 pounds. “The doctor expressed concern about being able to draw blood because my son was so dehydrated, and it took almost an hour because they couldn’t find a vein,” she recalls. “Afterward, the doctor came in and she said, ‘Mrs. Castellano, your son’s blood sugar is 1,200. He needs to be admitted immediately. I can’t guarantee the outcome of this, because your son is very sick.’”
“They told us that if we hadn’t gotten to the hospital that day, he most likely would have slipped into a coma,” she says. “Thank goodness they were able to get it under control.”
Luke stayed in the hospital eight days, but “we experienced a miracle,” says Rebecca and the family returned home to the new normal. “Because I had the nutrition background, I got the carbs down pat and learned quickly how to administer his shots ,”she continues. “At times it’s been a roller coaster ride with 10 finger sticks a day and highs and lows, particularly when he was younger and couldn’t vocalize how he was feeling, but throughout it all, in 16 years of living, Luke has never complained.”
A natural-born athlete, Luke recovered quickly and began to thrive with treatment, taking up football, basketball, baseball and lacrosse – at the early age of 5.
As he matured, options were weighed to enhance Luke’s active lifestyle and the family made the decision to place him on the CoZMonitor®, an “all-inone” blood glucose monitor and insulin pump. “The monitor worked beautifully for his circumstances for a time, but the only problem is that his body fat was so low, the only place they could put it was his stomach, so we would put it in his thigh or back, where it was too uncomfortable,” Rebecca says.
“With his active lifestyle, over time, we began experiencing minor ‘technical issues’,” says Rebecca. After an incident during a national flag football championship game, when then-10-year-old Luke was running with the ball and a member of the opposing team grabbed the flags from around his waist – along with the wiring from the pump – Luke reverted back to insulin shots, which he continues to this day, accommodating his diabetes condition with frequent blood checks to ensure his well-being.
Luke hit another bump in his life’s journey at the age of 9 when his growth stalled. “We saw him struggling and the blood sugars would go up and down like a rollercoaster,” Rebecca says. “We always knew he and hi s brother Nick were a little smaller because they were twins but once his four year younger brother Jake began to catch up to him, we knew something was wrong.” Also, Luke's blood sugar was fluctuating wildly, seemingly for no reason.
“He no longer was following the growing curve, and the doctors suggested it might be from his diabetes and problems with malabsorption, plus it was probably genetics as well since both my husband and I are on the short side,” she added. (Rebecca is 5’ 2’ and her husband 5’ 10”).
After undergoing growth hormone testing for several years with normal results, Luke was tested for celiac disease (see related story on page 14), a condition in which hypersensitivity of the small intestine to gluten leads to chronic failure to digest food. Although celiac sufferers experience abdominal pain, diarrhea and weight loss, Luke had none of those typical symptoms.
To Rebecca’s surprise the tests can back positive. “The doctor said, ‘Your son has celiac and this is why he was having all these problems.’”
(From left to right) The Castellano family: dad Santo, sister Rachel, brother Nick (Luke's twin), Luke, sister Diana, brother Jake and mom Rebecca.
“Short-stature celiac is what he was diagnosed with – it’s very unusual, the damage was all internal and it was asymptomatic,” she says.
Now dealing with a son with two chronic, autoimmune conditions and a daughter with celiac – Luke’s younger sister Rachel was diagnosed with the condition shortly after Luke – Rebecca sprang into action, hitting the books and educating herself about celiac, creating gluten-free recipes for tasty foods that also would meet the nutritional needs of Luke and Rachel. That effort evolved into a cottage industry with the 2011 launch of Rachel Lu Foods, Rebecca’s gluten-free commercial manufacturing company.
Meanwhile, Luke rebounded again, growing six inches and gaining 20 pounds within one year of his celiac diagnosis. “With Luke, again there was no question of why,” says Rachel. “He just did what he does best and that was to commit to his health, he ate strictly gluten free and within the year his blood sugar improved dramatically.”
“Sure it’s been a challenge, but I just work harder and it takes care of itself,” Luke says.
Now a junior at St. Anthony’s High School on Long Island, he seems like a typical teenager: he is obsessed with video games (“Call of Duty” and “Madden” are favorites), and loves sweets, particularly chocolate chip cookies…in moderation, with artificial sweetener and gluten-free, of course. In other ways Luke’s somewhat atypical.
He’s on the school’s varsity lacrosse travel team and dreams of becoming a Division 1 college player. He is member of the National Honor Society and carries a 95 grade point average, with the hopes of perhaps one day becoming a doctor or dentist.
And he continues to forge ahead with a positive attitude and can-do spirit.
“I am not the biggest kid on the field, but I have the biggest heart on the field, and I won't let anyone tell me I can't do this or I can't do that,” he says.
“I truly think there is an angel watching over me,” he continues. “Because of my diabetes, I have already in such a short time learned a lot. You should work hard at whatever you’re doing whether it is school work or sports. You have an amazing opportunity to be on this earth; as long as you do something helpful in this world, you are needed. You only live once, so make the best of what you got. I’m young and I am going to try the best I can to make a positive impact on the world. I have diabetes, but diabetes doesn’t have me!”