Sue Moller had suffered for years from stomach pain and wrong diagnoses before she finally learned, in 2005, that she had celiac disease. Her symptoms abated, but only once she excised from her diet anything that contained gluten, a protein found in wheat, barley and rye. So, goodbye bread, goodbye pasta, goodbye pizza and cake.
At first, the high-school guidance counselor despaired of ever enjoying food again, but gradually she found restaurants and grocery stores that catered to her dietary needs. She also discovered breads, pastas, pizzas and cakes that were safe to eat because they were made with rice flour, tapioca flour, potato flour, almond flour or a combination thereof.
In 2007, Moller started a blog, glutenfreeli.blogspot.com, to share reports on her findings. And in 2008 she inaugurated glutenfreeli.com, "your guide to everything free on Long Island!"
Indeed, the Web site is an invaluable resource for those with celiac or gluten sensitivities. Moller lives in Merrick but travels all over Nassau and Suffolk for her research. We sat down with her at Mama's in Oakdale, a popular "regular" Italian restaurant whose five-page gluten-free menu was one of Long Island's first.
How has the gluten-free scene changed since you were diagnosed four years ago?
It's much easier to eat gluten-free now. For one thing, the new labeling laws require food manufacturers to list any of the top eight allergens - milk, eggs, fish, crustacean shellfish, peanuts, tree nuts, soy and wheat - clearly on the label.
What about gluten?
Gluten isn't an allergen per se; wheat is. So you can know when a product contains wheat. But it also might contain barley or rye, so you really have to read the label carefully. Always read the label carefully, even if you've bought the product 100 times, because formulations can change. Trader Joe's sells a lot of gluten-free products, but they are notorious for changing formulations.
Where do you shop for gluten-free food?
I go all over, because different stores have different strengths. When I was first diagnosed, I really appreciated Dr. B Well Naturally in Plainview because all their gluten-free items have green stickers. They also have a great selection of prepared foods, and you can get gluten-free cake by the slice. Right near Dr. B Well, Get Healthy America carries certified gluten-free instant oatmeal packets. Fairway, also in Plainview, and Uncle Giuseppe's - especially the big store in Smithtown - have whole gluten-free aisles.
The Diet Shop in Ronkonkoma has a huge selection. Jandi's in Oceanside has a lot of good prepared foods and imported European products. Wild by Nature has a lot of gluten-free, and many King Kullens have a Wild by Nature aisle. Super Stop & Shop has gluten-free breads, and also Kinnikinnick products, which you usually only find in health-food stores.
What about baked goods?
The Best Ever Low Carb Cakes - that's their name - in Massapequa makes really good cakes; my sister, who is also celiac, loves their strawberry shortcake. Sweet Karma in East Meadow is great, although it's not a 100 percent gluten-free facility.
Shabtai Gourmet started out as a kosher-for-Passover bakery, but they figured out that their stuff was gluten-free, so they started selling it to health-food stores. During Passover you can buy their products in the supermarkets; Passover is the best time to buy gluten-free.
At home, how do you marry your gluten-free lifestyle to your nongluten-averse husband?
Keith eats my gluten-free brownies, and when we have pasta, it's gluten-free. But the gluten-free stuff is a lot more expensive. When Keith eats too many of my cookies, I'll tell him, "Go get Chips Ahoy."
Which restaurants do you eat at?
P.F Chang's, Carrabba's and Outback all have gluten-free menus. Chipotle lists ingredients and potential allergens on its Web site, so you know which menu items to avoid. I love Chipotle.
What about local restaurants?
Mama's has a huge gluten-free menu. I love the chicken Montanara. Smoking Sloe's in Northport, Oysterman's in Sayville, Pizza Bistro in Massapequa Park. Cafe Baldo in Wantagh makes very good pies. Café Formaggio in Westbury is great for celebrations. RS Jones in Merrick does a very good job. Everyone there is well-trained, but if you tell them you're eating gluten-free, they'll usually seat you in Marjorie's section - she's a waitress who has celiac.
What are the pitfalls of dining out?
There are problems with ingredients, of course, but it's also cross-contamination. For example, I can eat corn chips at a Mexican restaurant, but if they were fried in the same oil as the empanadas , I can't eat them. Same thing with French fries: If they were fried in the same oil as the breaded mozzarella sticks, I can't eat them. Or if someone dips their mozzarella sticks in the tomato sauce, I can't eat the tomato sauce.
What about pizza?
There are restaurants that make their own gluten-free pizza, and some of them get this pizza dough, Still Riding Pizza, that comes frozen, that's pretty good. At home, my favorite is the frozen Sicilian pizza from Joan's GF Great Bakes in Bellmore.
What steps can you take to make sure you don't inadvertently eat gluten?
I don't assume that anyone understands anything - counter people who don't understand that the chicken is breaded with bread crumbs, or chefs who don't know that flour is made from wheat. Also, a lot of people don't understand that the way I eat is not a lifestyle choice - they think it's like a low-carb diet. So in restaurants, I will refer to it as an allergy. I won't say "I'm on a gluten-free diet," I'll say "I need my hamburger without a bun because I am allergic to the bun."
I'm exhausted just talking to you.
Believe me, avoiding gluten is like another full-time job.
A doctor's explanation
There are a lot of misconceptions surrounding gluten intolerance and celiac disease. Dr. Peter H.R. Green, director of the Celiac Disease Center at Columbia University (celiacdiseasecenter.columbia.edu), provides some definitive answers.
What is gluten?
Gluten is a protein found in the cereal grains wheat, barley and rye.
What is celiac?
Celiac disease is an inflammatory condition in the small intestine, the result of the body's immune reaction to gluten, in genetically predisposed individuals. The inflammation can lead to malabsorption of nutrients. Moreover, common complications of celiac disease in adults include reduced bone density, anemia, increased risk of other autoimmune disorders and malignancies, infertility and neurological problems. An estimated 1 in 133 people in the U.S. have celiac.
What is gluten sensitivity?
A number of different conditions fall into this loose category: people who test positive for celiac antibodies but don't appear to have celiac disease, or people who don't have the antibodies but, nevertheless, have symptoms of celiac. Anyone whose symptoms resolve when they go on a gluten-free diet can be said to have a gluten sensitivity, or a gluten intolerance.
Do oats contain gluten?
Oats are gluten-free, but many oats are contaminated by contact with other cereal grains (wheat, barley, rye) that do contain gluten.
Is everyone better off avoiding gluten?
No. A gluten-free diet is not a healthy diet. It's deficient in fiber, vitamins and minerals - and is more expensive. There is no evidence that people without gluten sensitivity will benefit from abstaining from gluten.
Shabtai Gourmet, 516-652-5671, shabtai-gourmet.com
Tinkyada pasta, tinkyada.com
Still Riding Pizza, stillridingpizza.com
Dr. B Well Naturally, 8 Washington Ave., Plainview, 516-932-9355
Joan's GF Great Bakes, 1905A Bellmore Ave., Bellmore, 516-804-5600, gfgreatbakes.com. Also mail order
Trader Joe's, traderjoes.com
425 S. Oyster Bay Rd., Plainview, 516-933-6900
5010 Jericho Tpke., Commack, 631-493-9210
3418 Long Beach Rd., Oceanside, 516-536-9163
137 Alexander Ave., Lake Grove, 631-863-2477
1280 W. Broadway, Hewlett, 516-569-7191
Uncle Giuseppe's, uncleg.com
95 Rte. 111, Smithtown, 631-863-0900
364 Port Washington Blvd., Port Washington, 516-883-0699
2330 Hempstead Tpke., East Meadow, 516-579-1955
Wild by Nature, wildnature.com
198 Main St., East Setauket, 631-246-5500
369 W. Main St., Huntington, 631-424-6480
260 W. Montauk Hwy., Hampton Bays, 631-723-3071
2709 W. Long Beach Rd., Oceanside, 516-764-3580