From Sickness to Advocacy: A Gluten-Free Journey

in Celiac
Published: September 15, 2011

There were days that the fatigue was so bad that Shelia Cafferty could barely haul herself out of bed. She had hay fever, she kept breaking out into inexplicable rashes, she felt bloated all the time. Without answers and feeling awful continuously, soon, she sank into depression.

“I knew something was really wrong,” she recalls of those memorably miserable days of 2003. “But I just didn’t know what it was.”

What she felt was so opposite the Energizer Bunny that she is by nature. Cafferty, who trained as a nurse, had always had a busy career. She held senior administrative positions, running a seniors’ home, then owning a company that provided hospitals with respiratory and physical therapists. Now, she was dragging herself through her days, as husband Ken Cafferty watched and worried. What had happened to his vibrant wife?

Her doctor did blood work – no anemia, nor anything obvious. She sought out an endocrinologist and even got a second opinion before being put on medication for a sluggish thyroid. Yet she felt no better and the rashes kept appearing. An allergist did allergy blood tests, which indicated some food sensitivities but not necessarily allergies. The results were inconclusive and not illuminating.

Then in late 2003, a friend who heard about Shelia’s health concerns mentioned that she’d gone gluten-free and felt much better for it. Cafferty decided to try the GF diet – though she hastens to add in retrospect that she should have been tested for celiac disease or gluten sensitivity before eliminating gluten.

All the same, the results were startling. Cafferty felt a difference on the days she didn’t eat gluten: the depression began lifting, her skin began to clear, the bloating subsided.

She decided to undertake a strict gluten-free regimen. “I felt so much better after just two weeks. It was like I was my old self.”

The Journey Begins

This also marked the beginning of her journey into the gluten-free community, learning to cook well without gluten and getting involved with a support group when the Caffertys moved to the Indianapolis area.

With her organizing nature, Cafferty was soon planning events: gluten-free lunches, pancake brunches, holiday dinners and, eventually, a statewide luncheon. She called Dr. Alessio Fasano, the renowned celiac researcher, and he and Pam King from the University of Maryland’s Center for Celiac Disease Research agreed to come and that he would speak. “It was a packed house, we learned so much, it was fantastic.”

She and Ken Cafferty were greatly impressed that for both Fasano and his team “it isn’t about ego. It’s about helping people, it’s about improving the quality of their lives. There is no fluff; they are the real deal.”

Shelia and Ken visited Dr. Fasano’s center and he asked to do genetic testing for celiac, despite the fact that Shelia was already gluten-free. Eureka, she didn’t carry the genes for celiac disease, but Dr. Fasano was able to deduce from her symptom history that she definitely has gluten sensitivity. Finally, Shelia Cafferty had a diagnosis for the condition that had plagued her.

Ken Cafferty also represented a trust, which acts anonymously to fund humanitarian ventures. Shelia suggested: why not consider support for the Center for Celiac Disease Research and its life-changing research? The Caffertys helped to pull the parties together and the result was: an outstanding donation of $45 million.

And Now, an Expo

Never one to sit back, this year Shelia has organized the Gluten Free Living Now Expo for Oct. 7-9 in Carmel, Indiana. The event has an impressive schedule and features top speakers – such as Dr. Fasano – cooking demonstrations and workshops. (See the details here.)

Since pulling together an event like this takes an incredible amount of work, it’s a good thing that Cafferty has no symptoms to hold her back these days. Instead she exudes about her presenters, about the array of gluten-free and allergy-friendly foods, the vendors who’ll be turning up and showing their great products.

She wants others who have gluten intolerance to have what she now enjoys: the good life.