Diners with food restrictions push for optionsFARGO - Sara Vollmer misses fried chicken, Bud Light and Pillsbury crescent rolls. But giving up some of her favorite foods five years ago was the easy part of being diagnosed with celiac disease, an autoimmune reaction to wheat, barley and rye that had plagued her since she was 18 months old.
By: Ryan Johnson, INFORUM
FARGO - Sara Vollmer misses fried chicken, Bud Light and Pillsbury crescent rolls.
But giving up some of her favorite foods five years ago was the easy part of being diagnosed with celiac disease, an autoimmune reaction to wheat, barley and rye that had plagued her since she was 18 months old.
Finally figuring out the cause of her migraines, stomach aches and blisters that took weeks to heal gave her some relief, she said. But now, “spontaneity is out the window” as she is forced to stick to a strict gluten-free diet, the only relief to a celiac sufferer’s afflictions.
“This isn’t the worst thing I’ve had to do, but I can tell you that socially, this is the hardest thing I’ve ever had to do,” she said. “Socially, I miss work lunches and birthday parties, potlucks are created by Satan, and going out to eat is awful.”
Vollmer is among the millions of Americans following restricted diets that require careful planning, tough choices and a close eye on exactly what they are eating.
That can make it difficult, or even dangerous, for people living with diabetes, celiac disease, food allergies, high blood pressure and many other conditions to dine at a restaurant. But Andrea Haugen, lead clinic dietitian at Sanford’s Southpointe Clinic, said it’s important to help patients like Vollmer continue to live a normal life, even after a life-changing diagnosis.
“The social aspect of going out to eat is really nice, and we don’t want to take that away from people,” she said.
Haugen said many Americans live on restricted diets, not to lose a few pounds or try a new dietary fad, but to combat their disease and stay healthy.
Patients on dialysis are told to limit sodium, potassium, phosphorus, protein and fluids; a reduced sodium and protein diet can prevent further liver damage for cirrhosis sufferers; diabetics need to carefully monitor how many carbohydrates they eat; those with heart disease or high cholesterol cut back on sodium and saturated fat.
Food allergies, lactose intolerance, celiac disease and obesity also force dietary changes ranging from the minor to the drastic.
“I would say 60 to 70 percent of the population probably should be on some type of healthier eating plan,” she said.
Vollmer, 34, was diagnosed with celiac disease as a toddler in 1979. At the time, doctors told her parents that she would outgrow the ailment if she stuck to the “BRAT diet” – bananas, rice, applesauce and toast – for one year.
She said she spent her younger years “just sick,” dealing with constant migraines, stomach aches and bad sleep through high school and college. But things only got worse in 2005, when she underwent gastric bypass surgery – a trauma that kicked her celiac disease out of the less severe “honeymoon phase” and into overdrive.
Vollmer made the rounds, going from specialist to specialist for more than three years as she tried to figure out what was causing her increasing illness and an alarming new symptom – blisters on her arms, legs and face that took weeks, or even months, to heal.
She said one doctor told her she couldn’t have celiac disease because she was overweight – a misconception because as many as 40 percent of celiac sufferers have “meat on their bones.”
But Vollmer finally caught a break in 2007, when a dermatologist made the diagnosis she was waiting for by determining her blisters were a rare symptom affecting only 1 percent of celiac sufferers after they consume gluten.
She said the same kinds of misconceptions she faced at the doctor’s office also have plagued her since the diagnosis, with co-workers, family and friends often unaware just how important it is that she avoid wheat, barley and rye – in any quantity.
After switching to a gluten-free diet, Vollmer said her body is now especially sensitive to the protein that’s in flour, bread, pasta, pizza dough, cookies and many popular foods.
That means she’s especially at risk of cross-contamination at potlucks, family gatherings and restaurants, where all it takes is having a salad mixed with tongs that have handled croutons to make her violently ill for more than a week and cause another outbreak of blisters.
Gluten-free bread is contaminated if made in the same toaster as regular bread, she said, and wheat flour can linger in the air for up to 24 hours in pizza places, restaurants and kitchens.
Learning to trust
Vollmer said she used to look forward to grabbing lunch with co-workers or dinner with friends at a restaurant.
But the thought of this social activity now gives her a sense of dread and raises big questions most people don’t think about. Will the cooks know they need to use separate bowls to mix her gluten-free food to avoid contamination? Are there wheat byproducts in the cheese, spices or sauces that are being added to her otherwise safe food?
While Vollmer dines out far less often and constantly fears the next time she is inadvertently “glutened,” she said she refuses to let this disease prevent her from joining friends at a bar for a hard cider or the occasional meal at a restaurant – small parts of a normal life that have become acts of courage since the diagnosis.
“Anybody with any food intolerance has got to continue to be brave because if you don’t go out once in a while, the restaurant industry doesn’t have to change and different situations don’t have to accommodate you,” she said. “It’s imperative that you have to give it the old college try once in a while just because if you stop, they stop; if we all live in fear, no one changes.”
Vollmer, an office specialist in Sanford’s Office of Continuous Improvement, works in her spare time to raise awareness of celiac disease and inform the people around her about the importance of avoiding gluten for people like her – the only cure to deal with the illness for now. She serves as co-manager of the Gluten Intolerance Group of Fargo-Moorhead, which has 350 paid members, and also acts as an educator and speaker at conferences across the country under the nickname “The Delicate Flower.”
“You have to have humor when you’ve got something like this, or any food intolerance, because life is serious enough all by itself, and a food intolerance is very frustrating and isolating,” she said. “But it is not a death sentence, and you have got to remember that.”
Vollmer said it’s important for people following strict diets to call ahead before trying out a new restaurant. Try to talk to the chef or kitchen manager, she said, and let them know the dietary restrictions and ask for a menu choice or two that will work.
She said several websites can help make the choice easier, including Urbanspoon, which allows users to search by food intolerance and look at other diners’ reviews.
And celiac sufferers are getting more choices all the time, she said. There are now six pizzerias in Fargo-Moorhead that offer gluten-free pizza, she said, and more restaurants are joining in as they realize the potential market – about 1 in 100 Americans now have celiac disease, while many more have gluten intolerance that can be treated through a gluten-free diet.
But Vollmer said dieting diners should follow their instincts if they have any concerns that their food will not be safe.
“If you are not sure about your meal, do not eat it,” she said. “You’re the only one that will pay for it.”
Haugen said portions at restaurants are often much larger than they should be, so people on restricted diets should consider sharing a meal or ordering the smaller lunch portion. Many entrees also are loaded with extra fat, salt and other not-so-healthy additions to make them taste better, so she said it’s important to pay attention to nutrition labels and try to make sensible choices.
“Those things are very, very helpful, and making those small changes does make a big difference,” she said.
Vollmer said even though things are getting better and celiac sufferers have more choices, lingering misconceptions and a general lack of understanding about how dangerous any amount of gluten can be still make it risky to eat at a restaurant.
“For the restaurant industry out there, I know when people come in with a food intolerance it tends to be a lot more work. But trust me when I tell you that we’re begging for a great experience because we are putting our health in your hands.”
Sticking to a diet
Many common medical conditions can require sufferers to follow strict restricted diets, which can make it hard to stay safe while going out to eat.
- Diabetics must count carbohydrates and often need to monitor fats and protein.
- The only treatment for celiac disease is a gluten-free diet that avoids wheat, barley and rye products.
- Those with food allergies or intolerances need to make sure their food doesn’t have common ingredients like peanuts, shellfish or lactose.
- One way of combating high cholesterol or blood pressure is to follow a low-sodium diet, and people who are obese are often told to reduce fat and calories in their diet to lose weight.
Readers can reach Forum reporter Ryan Johnson at (701) 241-5587