Learning to live without gluten in Milwaukee

Pancakes. Pasta. Pretzels. Pizza. Pie.

These staples of the typical American diet are off-limits for people with celiac disease. Sufferers cannot tolerate gluten, a protein in wheat, rye, and barley (and their many derivatives). Symptoms can be painful.

“He had the embarrassing gastrointestinal symptoms,” said Linda Kramer of her husband John Shaw, who suffered from celiac disease until he started a gluten-free diet in 1987. “You get a lot of gas with this. Diarrhea, gas-especially younger children-you’d get to where there’s this huge bloated stomach filled with gas. It’s an unpleasant smelling gas. It’s something that never goes away. He had the stomach problem and it never went away.”

Kramer herself was diagnosed with celiac disease in 2000. She was suffering migraines, mouth sores, “crushing fatigue,” and eosinophilic fasciitis, a painful condition where white blood cells abnormally collect between skin and muscle. 

Celiac disease is a problem not just because of painful symptoms, but because gluten damages the small intestine (see graphic), preventing the body from absorbing nutrients from food, which leads to malnourishment. There is no known medication-the only treatment is lifelong abstinence from gluten.

In 2000, Bay View residents Kramer and Shaw opened the nation’s first gluten-free store, the Gluten-Free Trading Company, then at Sixth and Lincoln. In 2005, when they needed more space and a loading dock, they purchased their current building at 3116 S. Chase Ave., near the southeast corner of Chase and Oklahoma. While gluten-free options have proliferated both locally and nationally, Kramer said she believes theirs is still the only store strictly devoted to gluten-free products in Wisconsin.

The gluten-free market is growing. Almost one in 133 Americans has celiac disease according to the University of Maryland Center for Celiac Research. Many cases are not diagnosed.

Realizing the potential market, food manufacturers churned out 800 new products last year alone. Kramer and Shaw sift through the new options to determine what to stock in their store. Just one recent example is Le Veneziane, a new corn pasta from Italy. They have to track ingredient changes and frequent recalls, too.

A Radical Change

Kramer and Shaw say people come to the store with varied reactions. They may feel totally confused, angry over their restrictions, or view their new diet as a challenge. The list of prohibited ingredients fills a whole page and can leave shoppers at standard stores frustrated.

Bay View resident Ann Utke has celiac disease and reached the point of tears when she began hunting for foods she could tolerate.

“The first eight months, I’d go to the grocery store and just cry. I’d read every label and sometimes have to call the company,” she said.

The diagnosis caused Utke, like many sufferers, to radically reconfigure her eating habits. When she got the phone call relaying her diagnosis in 2006, she was about to eat a bowl of pasta.

In the intervening years, she has found substitutes she enjoys and sorted out unsavory brands. She said the gluten-free choices in the area are a boon.

“On the whole I feel very lucky to be in Milwaukee and in Bay View. There are a lot of people who have heard of the condition and who understand how to be helpful. When I travel I’m always glad to come home. There’s a lot of shopping within 15 minutes,” she said.

Utke has adapted her kitchen. For example, she and her husband Bill maintain separate toasters so his wheat bread crumbs do not contact her gluten-free bread. She works as a pastor and has found communion wafer substitutions like rice crackers.

She described herself as “a pretty adventurous eater” before her diagnosis, which came after she saw her gastroenterologist for unrelated symptoms. She recalled a mission trip to the Jamaican countryside a year before her diagnosis. “You could eat anything they put in front of you. I felt pretty willing to do that. Now, I couldn’t do that.”

Now, if she gets a craving, she has to be cautious, often getting the ingredients to make the item herself rather than popping into a standard store.

Because food is so social, she also mentions her condition to avoid misunderstandings.

“Socially, you have to do a lot more explaining to people. If you don’t take something, people might wonder if you don’t like what they are serving or if you don’t like them,” she said.

Confusion & Support

Gluten is so pervasive that it’s very difficult to avoid entirely.

“Almost everybody that’s newly diagnosed makes a mistake or two. Even seasoned veterans make mistakes,” said Kramer.

Reactions vary from stomach problems to a hangover feeling that lasts two or three days.

Shaw hears stories of autistic children, who are avoiding gluten, accidentally ingesting it when grandparents or babysitters give them Twix bars or licorice.

Bev Lieven, who coordinates the support group Milwaukee Celiac Sprue Crew, hears about a lot of slip-ups. She said some mistakes result from people getting distanced from the ingredients when they consume prepared foods. “It’s amazing the number of people who don’t have a clue what’s in the food they eat,” she said.

She has heard stories of hospitalized patients saying they can’t have wheat bread, yet they are served white bread-hospital staff don’t seem to realize white bread is still made with wheat.

Lieven talks with every new support group member and sends a quarterly newsletter to about 400 people. Commonly, support group participants stay in touch for about three years, learn the mantras like “read every label, every time” and “when in doubt, leave it out” and then leave the support group.

Dining Out

Celiac sufferers have to be cautious dining out because of “sneaky gluten” like marinades and because of cross-contamination from grills and other equipment.

If a restaurant mistakenly puts croutons on a salad, diners must be careful that the chef didn’t simply remove the croutons and send the salad back to the dining room. Crouton crumbs matter because a mere one-eighth teaspoon, the smallest size in most measuring spoon sets, can trigger reactions. The guideline for allowable limits is just 20 parts per million of gluten in a person’s intake-less in severe cases.

“Imagine a swimming pool filled with a million blue M&Ms and then throw 20 red ones in there,” said Kramer.

The food and hospitality industry became more aware of gluten issues with the passage of the Food Allergen Labeling and Consumer Protection Act. Effective in 2006, FALCPA requires manufacturers to identify wheat and the seven other primary allergens on food labels (milk, eggs, peanuts, tree nuts, fish, shellfish, and soy). Previously, gluten lurked unidentified in small portions in thickeners and fillers.

Options exist for local gluten-free dining, among them La Merenda, The Soup Market, and Outpost’s Fork in the Road café. East Side choices include Beans & Barley Café, Seoul Korean Restaurant, Tess, and Whole Foods salad and hot foods bars.

Transfer Pizzeria and Café has been serving gluten-free pizzas (with a two-hour notice) since fall 2008. The idea was chef Vasyl Lemberskyy’s. His process uses rice flour and is completely separated from the regular pizza flour. Transfer generally charges $3 extra per gluten-free pizza.

Several celiac sufferers said restaurants where food is prepared from scratch are more able to provide gluten-free food. These establishments can more easily alter an item’s preparation to eliminate gluten.

Whether they are dining out or eating in, celiac sufferers can also enjoy locally brewed gluten-free beer. Sprecher Brewery produces Mbege and Shakparo Ale. Lakefront Brewery offers New Grist.

Go to bayviewcompass.com for gluten-free recipes from local chefs, including Jeanette Hurt, local author of several food-related books; Bev Lieven, co-leader of the Milwaukee Celiac Sprue Crew; John Shaw, co-owner of the Gluten-Free Trading Co.; and Annie Wegner LeFort, pastry chef at Sheridan’s.

To learn more about celiac disease, see digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm.

SERVING CELIACS & MORE

Kramer and Shaw find that a variety of people come to the Gluten-Free Trading Company. In addition to celiac sufferers, there are parents of autistic kids, and people with other allergies. Some parents and doctors believe that avoiding gluten and casein, a protein found in dairy products, can help autistic children calm down and focus.

Another set of store patrons include relatives or friends who are cooking for the first group and people who suspect they have celiac disease but have not been formally diagnosed. They might lack health insurance and cannot afford the blood test and endoscopic biopsy involved in a confirmation, or they may have been diagnosed by a chiropractor or holistic medicine practitioner.

Most customers are from the greater Milwaukee area, but others live in Madison and stop on their way through Milwaukee. The owners say their customer service, like their willingness to help adapt recipes (they also sell cookbooks with gluten-free recipes), differentiates them from larger stores.

Shaw said they spend a lot of time ordering from small producers, some that might only manufacture one gluten-free item.

Some Midwest gluten-free producers include Enjoy Life Natural Brands in Chicago, ‘Cause You’re Special in Phillips, Wis., and Life Beyond Wheat Bakery in Antigo, Wis. Producers have to be careful of cross-contamination and some have dedicated facilities. This dedication plus less common ingredients and a small market makes the prices of gluten-free items higher than standard groceries.

Kramer and Shaw operate an online store and ship “a significant amount,” even to some local customers, but Kramer declined to provide what percentage of sales are online. Overall, the couple said theirs is a low-margin business but they have begun making a profit.

Large grocery stores like Pick ‘n Save and Woodman’s Market and mid-sized Outpost also carry gluten-free choices but have less selection than the dedicated store. Pick ‘n Save used to have a specific gluten-free section but the items are now shelved throughout the store.

Gluten-Free Recipes

• Gluten Free Bread & Pudding Brandy Sauce
• Gluten-free Decadent Chocolate Cake
• Gluten-Free Cereal Snack Mix
• Patatas Bravas
• Stuffed Potatoes with Caramelized Onions and Goat Cheese

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