Celiac 101: Crash Course in Gluten-Free for the Newly Diagnosed

You’ve just been diagnosed with celiac disease. Or maybe just made the decision to be gluten-free, for whatever reason. Let’s get practical. What do you need to know to get started?

First things first. What the heck is gluten? Well, gluten is a complex protein (made up of two proteins, gliadin and glutenin) found in wheat, barley and rye. Its sticky and elastic, so gluten helps baked goods retain their shape, helps bread rise and can thicken sauces and soups. Gluten sure does taste good, too. Rest assured, though, that gluten itself is NOT a nutrient. You can live a happy and healthy life on a well-balanced, gluten-free diet.

That being said, nothing in motherhood or medical school prepared me for the practical, nitty-gritty of how to live gluten-free. Here’s what I wish I knew on that first day:

Tip #1: Become an expert label-reader.
Read the ingredients list. Avoid wheat, barley, rye, malt.
In the US, the food allergen labeling law requires all foods containing one of the eight major food allergens to be clearly labeled. Wheat is one of the eight major food allergens; barley and rye are not. So if there is wheat in a food, there will be a “Contains: wheat” statement at the end of the ingredient list. But wheat-free DOES NOT mean gluten-free, so you still have to read the ingredients list.

As of August, 2014, any food labeled “Gluten-Free” must comply with the FDA criteria of containing less than 20 ppm (parts per million) of gluten. So, if a food produced in the US is labeled gluten-free, it should be safe to eat. If it is not labeled gluten-free, it may still be safe, but the manufacturer just didn’t go through the labeling process. So, again, read the ingredients list.

Wheat comes in many forms that you need to avoid: white, whole, bulgar, couscous, durum, einkorn, emmer, farina, faro, graham, kamut, matzah, semolina, spelt, triticale. You don’t need to remember all these types, as any wheat in a product has to be clearly marked.

Some food labels have a voluntary advisory statement along the lines of “made on equipment that also processes wheat.” Our nutritionist at Boston Childrens Hospital tells us that this is a legal, CYA statement, but to still assume its gluten-free if the ingredients otherwise comply.

Ingredients in food products often change, so recheck the labels whenever you eat. When in doubt, contact the manufacturer, either by calling the company or checking their website.

Tip #2: Avoid oats unless certified gluten-free
Oatmeal itself doesn’t contain gluten, but it is commonly cross-contaminated by wheat in the growing, harvesting or processing stages. Therefore, only eat oats that are certified gluten-free.

Tip #3: Know where gluten hides
Many people know that gluten is found in most pasta, bread, cereals, baked goods and pizza dough. Wheat and its partner-in-crime, barley flavoring, are cheap, so gluten is also a surprise find in lots of processed foods: sauces, soups and gravies; salad dressings and spice packets; beer; candy bars and candies; processed meats such as hot dogs, sausages, and deli meats; seasoned potato chips or frozen French fries. Its found in some vitamins and medications, lipsticks and even Play Doh (yup, kids can eat Play Doh anytime they put their creative little hands in their mouths). So, again, read your labels before you put anything in your mouth.

Tip #4: Don’t go overboard with the gluten-free products.
When my daughter was diagnosed with celiac disease, what did I do? I drove by the grocery store on the way home and picked out gluten-free versions of all her favorite foods. I came home with a smile plastered to my face, oozing positivity (“What a great time to be gluten-free!”). We tucked into the gluten-free bagels, the gluten-free pizza, the gluten-free cookies… and they were terrible. And terribly expensive. We all ended up feeling defeated. My advice? Don’t go crazy with the gluten-free foods. Don’t just blindly buy something because it says “gluten-free;” do your research. If you have to buy something in the first few days, maybe start with Udi’s gluten free bread – its the Homecoming Queen of popular gluten-free fare. Expense aside, it’s also about taste. After a month or so on a gluten-free diet, your palate will change and the gluten-free stuff tastes better.

Tip #5: Eat real, naturally gluten-free food.
Processed foods tend to be unhealthy, whether or not they’re gluten-free. Put your time, energy and money into REAL food – it tastes better and is better for you. After a lifetime of eating gluten, it’s hard to shift your perspective. But instead of substituting in the gluten-free version of every food, try substituting a real food. The strategy is to think of each meal as a plate, with half of the plate filled with vegetables/fruits, a quarter filled with protein and a quarter filled with starch. Instead of reaching for gluten-free pasta or gluten-free frozen fries, consider substituting a naturally gluten-free starch such as potatoes, rice, corn, sweet potato, quinoa, or buckwheat (another tricky name, but its not wheat/gluten). So, your next five weekday dinners could be: a stir fry (chicken/rice/vegetables), a chopped salad, a meat/potato/vegetable dinner. a taco night and a chicken-fried rice night. Boom – that’s the next five days planned. Gives you time to research and strategize, restock your shelves and plan your game.

Tip #6: Avoid cross-contamination
Gluten-free food is cross-contaminated any time it comes in contact with even trace amounts of gluten. This can happen when the food is produced (for example, oats growing in a field next to wheat), on a surface (counter or utensil) or in an appliance (toaster, bread machine, fryer with oil) that hasn’t been thoroughly cleaned after touching gluten, or even directly (when a restaurant picks the croutons off your salad before serving it to you to make it “gluten-free”).

In your home, you’ll need to flip your perspective – any gluten-free foods are now “normal” while foods that contain gluten need to have a separate space and plan. So find a shelf somewhere out of the way (sorry, gluten, that’s just the way its gotta be from now on) and store all gluten-filled foods there — bread, pasta, cereal, soy sauce, whatever. From now on, it should take extra effort to get to the gluten foods, so no mistakes are made. Handling gluten-containing foods in your kitchen should be approached with the same care – counters and utensils need to be washed well, gluten-free foods need to be cooked first and separate toaster, colander and cutting boards are needed for gluten-free and gluten-filled foods. Your system needs to be clear so that everyone (even visitors) in your home understands the plan. In our house, we use a color system, with gluten going in the white toaster, the white cutting board and the white colander, but no where else.

Tip #7: Eating outside your home calls for planning.
Spontaneity goes out the window when it comes to eating outside your gluten-safe home. Restaurants and travel take on a whole new layer of planning, but you can check on-line menus ahead of time to plot what to order. If going to a friend’s house, have a snack or meal in your purse, to pop in the microwave if no gluten-free options arise. Pot-luck? My schtick is to bring a big bowl of chicken-fried rice and a yummy gluten-free dessert to share. At cook-outs, you’ll find gluten-free hamburger and hot dog buns in my purse. I’m even the crazy lady that whips out a bottle of gluten-free soy sauce at the local Hibachi restaurant. High maintenance? Maybe. But safe? Yes.

Tip #8: Shopping Strategy: Stockpile
My neighbor, who has a daughter with multiple food allergies, gave me a reality check when I told her that my daughter needed to be gluten-free. She just looked me in the eye and said, “Say goodbye to shopping at just one grocery store.” And she hit the nail on the head with that one. The bread my daughter likes can be found in one grocery store. Another has the best prices on baking essentials like almond flour and coconut oil, and a specialty bakery 30 minutes away carries an exceptional gluten-free challah bread (a girl’s gotta have French toast, right?). But, like you, I don’t have time to go to 3-4 stores every week. So, I buy in bulk and store in a freezer. I order what I can on-line (thank you, Amazon Prime!). And when I make a trip to buy a favorite product, I pick up a 2-3 month supply and freeze it.

Tip #9: Consider avoiding dairy in the first few months.
Talk to your doctor before cutting out another food group, but many people with celiac disease also have issues with dairy. The enzymes that break down lactose (a sugar found in milk products) are found in the tips of the intestinal villi, so both get destroyed with gluten ingestion. Reactions to dairy/lactose intolerance can mimic that of gluten ingestion, with bloating, stomach cramps and diarrhea. It can take months or years for the villi to heal on a strict gluten-free diet, but dairy can often be successfully reintroduced when that healing occurs.

Tip #10: Don’t cheat.
Its tempting; I know. But even miniscule amounts of gluten can make someone with celiac disease sick. Trace amounts can cause intestinal damage and medical complications, even if it doesn’t cause symptoms. Focus on what you CAN eat and make it delicious. Then remember the purpose of the meal – nutrition, health and connecting with family and friends. With celiac disease, your health is under your own control; don’t cheat.

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