Life StoryOct/Nov 2008 Issue

Healthy, Happy, Gluten-Free

Changing her diet transformed her life

For a woman who’s lived with pain for most of her life, Diane Kittle has a strikingly positive attitude. After decades of enduring mysterious aches and illnesses, inconclusive medical tests and multiple surgeries, Kittle, 50, discovered last year that she has a hypersensitivity to gluten, the protein found in wheat, barley and rye. For Kittle, the finding inspired a lifestyle change and renewed health—and it launched a second career. The former medical equipment-leasing representative has turned entrepreneur; she’s opening a gluten-free bakery in Glastonbury, Connecticut.

Sick All the Time
Kittle grew up in Westbrook, Maine, with two older sisters and a younger brother. The family was active and loved the outdoors. If they weren’t swimming in the river, lake or ocean, they were riding bikes, playing hide-and-seek or baseball or putting at the local miniature golf course. In the winter, they spent time building snow forts, sledding and skiing.

Kittle recalls that in those years she had more bouts of tonsillitis and ear infections than most kids. “My mother says my ear pain was so great when I was a baby that I would stop eating. The doctor told her to let me play with my food with my hands and eventually I would eat, which I did,” Kittle says. “But back then, no one made a connection. Frequent ear infections and tonsillitis weren’t immediately related to food allergies,” she says. “And those illnesses didn’t define me.”

As she matured, she began to develop debilitating pain associated with her reproductive organs. At 9, the doctors attributed the discomfort to the beginning of her menstrual cycle and the growth spurt that comes with adolescence.

By high school, she was working five days a week at a pizza parlor. As time went on, she was frequently ill, often with gastrointestinal distress. After several years of mounting symptoms, she underwent a battery of medical tests.

“I was diagnosed with a sluggish gallbladder and irritable bowel syndrome and was told to eat a bland diet,” she says. “I had removed dairy from my diet by then, attributing some of the severe gastrointestinal episodes to eating cheese.”

Going dairy free and eating a bland diet at age 19 seemed to help for a while. But at 23, Kittle was diagnosed with stage 4 endometriosis and underwent an involved surgery followed by a six-month male hormone regimen. Faced with disturbing side effects from the hormones (“My voice was changing. My body was changing. It was horrible.”), she weaned herself from the drug. Within a few short months, all the pain related to the endometriosis resurfaced. She was denied candidacy for a then cutting-edge laser surgery because of the severity of her condition.

Getting desperate, Kittle traveled to Massachusetts to meet Michio Kushi, an expert on the macrobiotic diet and founder of the Kushi Institute. Kittle decided to give the diet a try. The version which Kushi suggested for her was comprised primarily of brown rice, vegetables and fruit, beans and legumes – and it just happened to be gluten free.

“Within two months on this macrobiotic diet, all of my symptoms disappeared,” she says. “Eating that way was a difficult regimen to maintain at first but everything was relieved, from allergies to endometriosis to gastrointestinal problems.”

She maintained the diet throughout her 20s and experienced tremendous health benefits.

At 28, Kittle married, and she and her husband moved to the Boston area. Her career in medical equipment leasing was booming, which meant considerable travel. She found herself slipping back to eating a more traditional diet and, in fairly short order, all her symptoms reappeared. Given the constraints of her job and the fact that she wanted to enjoy meals with her husband, she decided to resign herself to the discomfort.

“I just learned to live with it,” she says. “The gastrointestinal problems, the gallbladder attacks, the pain from endometriosis, the allergies. It was not unusual for me to eat and then run to the bathroom. To me, this was my life and this was how I was going to deal with my digestive system.”

Kittle remembers her stepdaughters commenting on her health. “They said they had never seen anyone who as sick as I was and as often as I was,” she says.

With characteristic resolve, she determined not to define herself by her illnesses.

“I never thought of myself as a sick person. I simply believed I had a few health challenges,” she says. “I rarely let my health issues interfere with my life. I still got up each morning and tended to my family, to my career, to outside interests and activities despite any discomfort or pain I was experiencing.”

During those years, she underwent several surgeries for endometriosis. Like clockwork, she also found herself at the hospital at least twice a year with severe gastrointestinal or gallbladder attacks.

Asked what that felt like, she pauses.

“Think of it as childbirth every six months. Think of it as a kidney stone every six months. Anyone who has dealt with this knows what I’m talking about. You just learn to live with it because, really, what are your options?”

Over all, she was getting by, exploring Boston, working, gardening, swimming, kayaking and traveling.
    
Other Hurdles
In May of 1999, Kittle and her husband moved to his hometown, Glastonbury, Connecticut, which remains her home today. Shortly after they settled in, Kittle’s husband became terminally ill. After extended debilitation, fighting cardiac and pulmonary disease and diabetes, he died in April 2003. The death became a transforming milestone in Kittle’s life.

“I knew it was time for a change,” she says. She left the corporate world and pursued her interests in the arts and baking by enrolling in a pastry chef program at an area college. While in school, she interned with a nationally known wedding cake designer.

“I loved it. I love baking,” she says.

After graduation, she stayed on with the wedding cake designer as a sugar artist, managing a wine shop at night. Her new life, however, was both blessing and a curse.

“Within a year or so of being exposed to flour each day, I found myself very fatigued and having increased gastrointestinal issues,” she says. “I was also experiencing significant joint pain.”

Over the next two and a half years, she was tested repeatedly for Lyme disease and rheumatoid arthritis. The tests always returned negative and the doctor couldn’t find an answer to explain her symptoms.

“I also had been gaining weight and nothing seemed to work in losing it,” she says. “After eating a very healthy and controlled diet with no success, I joined Weight Watchers. I weighed all of my food. I wrote everything I ate in a diary. I counted points. I exercised. And after three months, I still weighed the same.”

What’s more, her gastrointestinal distress and joint pain were worse than they had ever been. That’s when a friend who had been diagnosed with celiac disease a year earlier encouraged her to see a naturopath doctor. Kittle had just undergone a colonoscopy to rule out certain potential ailments. Doctors were concerned about cancer. During the surgery, doctors removed some polyps and found evidence of diverticulosis. In addition, her surgeon reported that her intestines were “extremely inflamed,” calling them “the angriest bowels he had ever seen,” she recalls. He took a biopsy to check for bowel cancer (the results were negative) and then she was scheduled for an ultrasound to rule out ovarian cancer.

A few weeks after the surgery, Kittle met with the naturopath doctor and spent two hours dolling out her medical history.

“The doctor kept nodding her head as if she knew what I was going through,” Kittle says. “She immediately put me on a three-week elimination diet, removing all food allergens from my diet. She had me eating very specific foods.”

Kittle also did some fasting and supplemented her diet with a gastrointestinal detoxification shake. After the elimination diet, she was to reintroduce specific foods, one at a time, to her diet. The first was gluten.

She had an immediate and severe reaction.

“It was January 2008 when the doctor gave me the diagnosis—a hypersensitivity to gluten. She told me I had celiac disease,” Kittle says. She also had reactions to yeast, dairy and pork. “Of course, I already knew about the dairy,” she says.

Gluten Response
“The reaction to gluten is on a continuum,” says Alessio Fasano, M.D., medical director of the University of Maryland School of Medicine’s Center for Celiac Research. “You can have no reaction. Or you can have an allergy, a sensitivity, an early stage of celiac disease where the condition isn’t revealed by biopsy or you can have full-fledged celiac disease.”

Celiac disease is an autoimmune disorder that affects more than 3 million people in the United States. Experts say that 1 person in 133 has the condition, with many undiagnosed. Symptoms, which are wide-ranging and can vary from person to person, include abdominal pain (gas, cramps, bloating), diarrhea or constipation (or both), fatigue, unexplained weight loss or gain, anxiety and depression. Some people with undiagnosed celiac disease have few, if any, obvious symptoms.

The only treatment for this genetic condition is life-long adherence to a gluten-free diet. If left untreated, the disease damages the lining of the small intestine, affecting and limiting nutrient absorption. Over time, the condition causes malnourishment and all the accompanying symptoms. That’s why celiac disease is linked to conditions like iron-deficiency anemia, osteoporosis, vitamin K deficiency and infertility (including endometriosis), as well as other autoimmune disorders like type 1 diabetes and rheumatoid arthritis.

Celiac experts like Fasano urge patients to get a definitive diagnosis of the disease (via a positive antibody blood test and biopsy confirmation of small-intestinal damage) before embarking on a gluten-free diet. Once a patient has eaten gluten free for a while, the blood test is no longer a reliable indicator of the disease.

When Kittle met again with her surgeon, she told him about her experience with the elimination diet and the naturopath’s diagnosis.

“I asked him why he hadn’t tested me for celiac disease. He said he was focused on the possibility of cancer but that, given the condition of my intestines, it was highly probable that I had celiac sprue,” Kittle recalls. The doctor suggested she undergo surgical biopsy to confirm the diagnosis.

“I chose not to have any additional tests,” Kittle says. “I feel much, much better on the diet and I have no problem adhering to it.”

There is a genetic test available for celiac disease.  It’s easy and non-invasive but it’s also fairly expensive (about $400) and isn’t always covered by insurance.

That’s an option that Kittle may choose to pursue at a later date.

A New Life
The decision to go gluten free marked the start of a new life—a leasing rep turned baker and entrepreneur in Glastonbury. Even before meeting with the naturopath, Kittle had suspected she had a problem with gluten and had begun experimenting in the kitchen. Now she decided to become an expert on this new way of eating, cooking and baking.

“I read as much as I could find about gluten-free baking, spent lots of money stocking up on every possible gluten-free flour and ingredient and started baking each and every day,” she says. “First cookies, then cupcakes, then muffins, cakes, pies and breads.”

After a full day of baking, Diane Kittle delivered baskets of homemade gluten-free, dairy-free breads to family and friends to sample. I wanted to know what people liked.

She used some recipes from gluten-free cookbooks but also began creating her own. In addition, she converted her favorite traditional recipes to gluten free and dairy free, referring back to her macrobiotic studies to pull in nutritious ingredients and organic whole foods.

“I literally spent months in my kitchen developing recipes,” she says.

She began delivering her gluten-free goods to a network of families, some suffering from celiac disease and others who had children with autism or food allergies. She baked six or seven days a week and her testers returned enthusiastic reviews, eventually making requests for particular goods. The response from the samplers was gratifying.

“Baking is no longer a guilty indulgence for me,” Kittle says. “It’s so satisfying and exciting to bake delicious, healthy, natural foods for others who need to maintain their health.”

Posed with the question of whether she resents the time lost to ill health and misdiagnosis, Kittle turns pensive.

“I don’t look back with resentment. I’m thankful for my health today and thrilled with the transformation my life has taken as a result. I’m relieved that my condition is something that is as manageable as changing my diet, that it wasn’t something life threatening,” she says.

“I’m feeling better, lighter, more energetic now. I love the work I’m doing and it’s helping others. What could be more rewarding than that?” LW

Comments (2)

I work for a Chiropractic Physician, and we frequently order testing through www.Enterolab.com. Individuals can order their own test kits from this lab without a doctor's order. Their test, Gluten Sensitivity Gene Test, is $178 with shipping, and is the most economical to let a person know if they have the genes for gluten sensitivity and/or Celiac. It will also let them know if they have one or two (whether they were passed from only one parent or both). This also is a very valuable tool in knowing if the individual will likely pass the genetics on to their children. And if siblings likely might have the same genes, thus the same traits.

Posted by: Krista G | April 2, 2013 11:04 AM    Report this comment

Very interesting story about Diane Kittle, which sounded very familiar to me. I was diagnosed with Systemic Lupus in 1973 and was sick most of my life from then on until I decided to try a gluten free diet at age 67 and I feel like a new person with energy and no more joint pain. Sure wish someone had told me to try this a long time ago, but I also will not look back, just take it one day at a time and enjoy what life I have left, gluten free.

Posted by: Penny W | April 2, 2013 10:22 AM    Report this comment

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