Living with a gluten-free diet By Wendy Fox, Globe Correspondent | April 19, 2006
WESTFORD -- There's precious little spontaneity in shopping for a gluten-free diet, and Jessica Boddy will miss that. ''Just being able to grab a pizza, or a muffin in the store when you're shopping," she says wistfully, knowing those days are over.
Mitchell Cohen, only 12 but already a nine-year veteran of the gluten-free life, doesn't hesitate a split second when asked what he wishes he could eat. ''Pop-Tarts," he says with certainty. ''They smell wicked, wicked good."
Boddy, 27, a social worker who lives in the South End, was diagnosed last month with celiac disease, a condition that prevents the body from digesting gluten, a protein found in wheat, barley, and rye. She and Cohen, a sixth-grader in Westford who was diagnosed at age 3, and legions of others who suffer from the condition cannot eat anything containing those three grains. That rules out regular bread, cereal, cookies, crackers, pizza, pasta, and even many soups, prepared foods, and condiments. Instead, they eat bread made with bean and tapioca flours, cornstarch, and xanthan gum. They buy pasta made with amaranth flour. They mix ripe bananas with soy and potato starch flours to make banana bread.
If they do ingest gluten, reactions can take many forms and vary in intensity from moderate discomfort to severe constipation or diarrhea, vomiting, skin rashes, anemia, weight loss, and fatigue. Despite efforts to develop a pill or vaccine, the only treatment so far is to avoid gluten.
KNOW SOMEONE WITH CELIAC DISEASE? Share advice and hear from others at www.boston.com/ae/food.
As many as 2 million people in the United States are thought to have the disease. However, Dr. Ciaran Kelly, director of the Celiac Disease Center at Beth Israel Deaconess Medical Center, says that about half of those have no symptoms, and for them, whether to avoid gluten -- and possibly avoid future complications -- is a personal decision.
Kelly acknowledges that the biggest negative in adhering to a gluten-free diet is that it ''requires effort, and also tends to be more expensive than being on a regular diet." Also, there are ''some social problems" -- such as not being able to order off many restaurant menus and the complications of having different meals at home with family and friends.
Cohen, the Westford boy, understands that very well. ''I used to be so jealous of my friends" who could eat whatever they want, he says. ''But I got used to it."
That means packing his own lunch for school, often with gluten-free bread his mother makes. It means that when his family (mother Susan, father Rob, and 9-year-old sister Julie, none of whom has celiac disease) sits down for dinner, they wrap grilled steak tips in romaine lettuce leaves, instead of in bread or wheat roll-ups. They have rice, which Cohen can eat, and pass around a plate of carrots and sliced cucumber. Luckily, he says, ''I love fruits and vegetables."
Gluten, it seems, is everywhere. The label on Kikkoman soy sauce says it contains wheat. Trader Joe's organic tomato and roasted red pepper soup doesn't actually contain wheat, but the label says it is ''made on equipment shared with wheat," and thus may be contaminated. And while Jiffy corn muffin mix may sound safe, because cornmeal does not contain gluten, the first ingredient listed on the box is wheat flour.
Melinda Dennis, 40, a registered dietitian and nutrition coordinator at Beth Israel Deaconess, who was diagnosed with celiac disease 14 years ago, recently led a few people with the disease on a tour of a Whole Foods store in Cambridge to show them how to read food labels and find gluten-free products. ''I couldn't fill a small basket with [gluten-free] food in 1992," she tells the group.
Now, most supermarkets carry gluten-free products. According to SPINS, a San Francisco-based company that tracks the natural products industry, more than 3,150 gluten-free products are on the market, with more than $696 million in annual sales. Sales of gluten-free products increased 13 percent from January to December 2005, according to the company's figures.
Still, if it affects you, you need to pay attention.
Some chicken stock contains flour, Dennis says, though the Pacific brand is gluten free. Cider vinegar, made from apples, is fine, but malt vinegar, made from barley, is not. Distilled white vinegar is all right, even though it is made from wheat, because the distillation process kills the gluten. That means bourbon, Scotch, and other whiskeys are also gluten free. (A few gluten-free beers, made with grains other than the traditional barley, are on the market as well.)
Susan Cohen, Mitchell's mom, keeps two jars of peanut butter in the pantry and two tubs of margarine in the fridge -- one for Mitchell and one for everyone else -- as the boy can have a bad reaction to even a crumb of bread from someone else's knife. She uses a separate colander for draining her son's pasta, and a separate cutting board for his bread. She uses special flours when baking for him, and says ''you can pretty much adapt any recipe to be gluten free."
Still, as Kelly suggests, adhering to a gluten-free diet can be expensive, and for that reason, Cohen goes online to buy gluten-free flours in bulk. A gluten-free, 12-ounce Sherrie's cheese pizza, for example, is $6.69 at Whole Foods, compared with $3.69 for the store's 14-ounce 365 brand cheese pizza. A loaf of gluten-free bread is $4.99 at Whole Foods; a traditional loaf is $1.99 at Shaw's.
Ah, bread. That is what Boddy, the newly diagnosed social worker, will miss -- especially ''a French baguette," she says after the market tour. Her fiance, Oved Lourie, who also went on the tour (though he doesn't have celiac disease), knows the days of spontaneous shopping are over for him, too.
''Now I have to get the birthday cake ahead of time," he says, with a little smile to Boddy. ''None of this last-minute stuff."
Of course, he could buy a gluten-free cake mix and bake it himself.
Posted by clpgotlyme (Member # 7875) on :
Foggy, Do you have Celiac disease? In addition to Lyme, I have celiac disease and chronic migraines (somewhat better with treatment).
Somedays it is overwhelming! Luckily I am an accomplished GF baker as I have been doing it for my daughter for 12 years and myself for 5. If anyone needs help with a GF diet, I'm your woman! Cindy
Posted by Foggy (Member # 1584) on :
Cindy, an MD thought that my fog might be coming from a food allergy. My first test was borderline by my 2nd-3rd was -. I tried the trick/pricy GF diet and didn't notice a reduction in my fog. Was worth a try anyway.
Do you get lightheaded brain fog from your CD?
Posted by clpgotlyme (Member # 7875) on :
Foggy, My brain fog comes and goes. With Celiac, Lyme and Migraines, who knows. I did get some reduction after going GF.But then the Lyme got bad..........
Someday I'll get my brain back! Cindy
Posted by cantgiveupyet (Member # 8165) on :
thanks for posting this.
i can relate to the impulse shopping. sometimes i got to whole foods and just stare at the baked goods...and just smell them from a distance...since i cant eat any of them due to lyme and yeast.
i look at the chocolate i could eat before my bladder didnt allow it anymore.
I avoid wheat too as i do sometimes have a reaction to it.