Enjoying Gluten-Free Life

Spreading the word about celiac disease 

Shannon Ford’s life is full. Crowned Mrs. United States on August 4, 2011, she now combines her new role with a full-time job as Human Resources Manager for a wealth management company. A celiac herself, her platform during her reign is “1 in 133 – Raising Awareness for Celiac Disease” – with 1 in 133* the rate of celiac disease in the United States.

Celiac symptoms often appear during a time of stress, and Shannon was no different in that respect. Becoming engaged (a happy stress) combined with traveling the country handling layoffs in early 2009 resulted in classic celiac symptoms that included anemia, a distended stomach, IBS and flatulence (not pleasant but many of us can relate). Also common, doctor after doctor couldn’t find the cause of her symptoms.

Finally her fiancé heard about celiac disease and suggested she get tested. Reading up on it led her to believe she had her answer. Testing the idea, she removed gluten for a week, but not knowing about hidden sources like soy sauce and sarimi [the imitation crab meat used in some sushi], she believes she was probably eating small amounts. Even so, she started to feel better. Her internist, cardiologist (she had also developed a low heart rate) and gastroenterologist wouldn’t do the blood test. Finally a doctor agreed, the endocrinologist treating her for the hypothyroidism that had also developed. Shannon says, “I told my endocrinologist I had removed it for a week and I’m feeling better. For the test I started eating gluten again, and I started feeling bad.” This doctor had actually planned to up the medication she’d given her because the thyroid was low again after an initial positive response to the drug. After the test Shannon adds, “My doctor said ‘You’re not going to believe this. It came out positive.’” The test’s positive result gave Shannon the answer she needed (and her thyroid eventually tested normal without drugs on the gluten-free diet).

Her life has changed in ways that may not sound happy to some, but she’s enjoying her new healthy lifestyle. She says, “I’ve always loved to bake and now never bake. I grew up eating Dunkin Donuts for breakfast and fast food for dinner. I was never around a home-cooked meal. My view of eating healthy was eating pre-packaged lean meals. Now I crave healthy eating and less sugar.”

In the two plus years since her diagnosis, Shannon has switched from a standard gluten-free diet to the paleo diet (no grains, dairy or legumes). Her meals reflect this. “My cooking now is simple. I’m not cooking with a lot of oil. With the right seasonings you can make a chicken breast taste fantastic.” She often comes home and cooks, something she didn’t do very often in the past, with favorite meals chicken breast or salmon seasoned with herbs and cooked on her George Foreman Grill, vegetables on the side.

She’s also changed her attitude on exercise. “I’m more focused on fitness. I think it kind of goes hand in hand. The more I learned about celiac the more I learned about eating right: organic, eating clean. That kind of put me on a fitness quest.” Her workout includes CrossFit, a high intensity exercise related to the paleo diet.

When she travels, usually to New York City for business, she takes a George Foreman grill and books herself into a hotel she knows has a refrigerator in every room. After a trip to a local Whole Foods, she has everything she needs to make her own meals. This same method worked well during the pageant competition in Las Vegas – a time when she particularly wanted to feel her best.

A fan of Asian food before and after her diagnosis, Shannon still enjoys going out for sushi – even to the point of keeping a bottle of gluten-free soy sauce in her desk at work. When there’s a company function, Shannon is fortunate to be the one planning it and choosing the menu. Others laugh because she’s the first in line – but that protects her against cross-contamination. If there’s ever a question about any food there or elsewhere, she says, “If I don’t know for sure I just don’t risk it.”

The fiancé who helped uncover the celiac disease is now her husband. Their wedding reception at the Biltmore Hotel Miami first had a pre-event tasting to verify which foods to serve. Three choices of chicken were offered: two with gluten, one without. Her fiancé and brother tried all three and preferred the simplicity of the gluten-free version so only it was served. Some expect gluten-free food to be inferior; not so.

She doesn’t feel deprived with how she eats. On the contrary, she says, “I don’t think of it as a diet. I think it’s about getting back to eating real food. You start to taste what real food tastes like.”

Some doctors still believe this is a rare disease. Three of the 54 competing for the Mrs. United States crown were celiacs. That would actually be one in 18. If you’re still on the fence as to whether or not being a celiac or gluten intolerant is causing your symptoms, that fact should give you (gluten-free) food for thought.

Shannon’s Do’s

• Understand how to live gluten-free. She bought “Living Gluten-Free for Dummies” and found it to be “a great first resource.” As with all of us, she adds, “It was a learning process. There were days I was probably eating gluten and not realizing it.” 
• Be proactive. “When I was first diagnosed and would go out to eat, I wasn’t very proactive. I told the waiter or waitress I couldn’t eat gluten but don’t know that the message got to the kitchen. I didn’t want to be adamant, I didn’t want to come across as being a diva. Not being proactive, I had a lot of incidences. I’ve become more assertive and aggressive.”  
• Set your limitations. “At Christmas parties I definitely didn’t eat any gluten but relaxed about the other grains because a couple of tortilla chips won’t put me in bed for 48 hours.” For family events, she brings her own food. “My in-laws are great people but still don’t understand. They don’t know why I don’t just take a pill. They still try to feed me apple pie because it’s apple.”

* Fasano A, Berti I, Gerarduzzi T, et al. Prevalence of celiac disease in at-risk and not-at-risk groups in the United States. Archives of Internal Medicine. 2003;163(3):268–292.