For people with celiac disease, an autoimmune disease that’s triggered by eating gluten (a protein found in wheat, barley, and rye), news of a diagnosis can at once be a relief and a huge burden. It may be a relief because it can take up to a decade to get the accurate diagnosis, and a burden because now it’s up to you to change your lifestyle to control the disease. (1,2)
Celiac disease is not gluten intolerance or sensitivity — conditions that are often confused for one another or assumed to be one in the same. “Gluten intolerance and sensitivity have been used interchangeably. Collectively, we talk about them as ‘nonceliac gluten sensitivity,’ or ‘NCGS,’” explains Rupa Mukherjee, MD, a gastroenterologist at Beth Israel Deaconess Medical Center in Boston.
Unlike celiac disease, where the body attacks the small intestine and creates damage, people with NCGS do not show they have elevated inflammation. NCGS sufferers also do not have the antibodies that people with celiac disease produce. But they do have remarkably similar gastrointestinal symptoms (diarrhea, constipation, bloating, gas), as well as non-GI symptoms (joint pain, brain fog, neuropathy), Dr. Mukherjee says.
Doctors also can’t give a lab test to diagnose NCGS — a GI doctor would likely make the call based on negative tests for celiac, symptoms that appear from eating gluten-containing foods, and symptoms that go away once a patient goes gluten-free, she explains. (3)
But for both of these groups, going on a gluten-free diet is often the best course of action to control symptoms. Yet for a person managing celiac, it is even more critical to prevent the inflammation and intestinal damage that consuming gluten creates.
How to Build a Celiac Disease Diet to Control Your Symptoms
The best treatment for celiac is all about diet. “Right now, avoiding gluten is the only treatment for celiac disease available,” says Gerald Bertiger, MD, a gastroenterologist and member of the board of directors for the advocacy organization Beyond Celiac.
Because eating gluten — even minute amounts of it — can trigger a harmful reaction, people with celiac need to take special precautions to avoid it completely. “Even small amounts of gluten, like in a seasoning, can cause sustained inflammation of the small intestine that can lead to symptoms down the road,” explains Mukherjee.
Responses to a gluten-free diet vary depending on the person, she adds, with some people feeling immediate relief and others continuing to struggle for months. If you fall in the latter group, your doctor may want to investigate if you’re also suffering from another disease that often coexists with celiac, such as lactose intolerance or irritable bowel syndrome (IBS), says Mukherjee. This is an important part of the follow-up visit with your healthcare team.
Top Foods to Avoid When Managing Celiac Disease
Here are the foods with gluten celiac patients should avoid: (4)
- Wheat, including spelt, farro, graham, khorasan wheat, semolina, durum, and wheatberries
- Malt, including malted milk, malt extract, and malt vinegar
- Brewer’s yeast
- Wheat starch that has not been processed to remove the presence of gluten to below 20 parts per million (ppm) and adheres to food label guidelines set by the U.S. Food and Drug Administration
This list is important to understand because it provides direction on what to look for on food labels. But there are certain foods that are likely to contain gluten. It is best to avoid these processed foods unless labeled otherwise. (5) When checking labels, make sure they say “certified gluten-free” (rather than simply “wheat-free”), suggests Mukherjee:
- Brown rice syrup
- Desserts, like cake, cookies, and pie
- Crackers and seasoned potato chips
- Energy bars
- French fries
- Processed meat, including hot dogs and lunch meat
- Salad dressing
You also want to consider other more hidden sources of gluten, including: (4)
- Vitamins and supplements
- Lipstick and lip balm
- Communion wafers
- Eggs at restaurants (some restaurants add pancake batter to scrambled eggs)
- Play dough that you may handle before giving to your children
- Toothpaste and mouthwash (6)
How to Order When You’re Dining Out With Celiac Disease
Considering only a small amount of gluten can trigger symptoms, it’s important for anyone with celiac disease to be aware of the risk for cross-contamination when dining out. For instance, if you’re ordering a gluten-free fried food, Dr. Bertiger recommends asking someone knowledgeable at the restaurant how they fry their food. “If it’s fried in the same oil as gluten-containing foods, that’s enough to cause a problem,” he says. Many restaurants only have one fryer.
Additionally, you can call a restaurant during a non-busy time ahead of your meal to talk about your options. When you’re ordering, stress to the server that you absolutely need to eat gluten-free. If you’d like, you can explain why. (7)
Also, ask detailed questions about ingredients and how food is prepared. This helps the staff understand that you’re not eating gluten-free because you’re following a “trendy diet” (and therefore cross-contamination doesn’t matter as much), but that it’s a matter of your health.
A Word on Medication and the Risk for Gluten Exposure if You Have Celiac Disease
Many medicines contain gluten as fillers and binders, which can make treating celiac disease even more of a challenge.
Drugs are not required to note that there may be gluten in the formula on the label. “Sometimes even manufacturers don’t know,” says Bertiger. When patients ask if they can take a specific medication, “the truthful answer is ‘we’re not sure,’” he says.
If a medication is important for a patient’s health, Bertiger advises taking it; doctors can then retest for antibodies to see if the particular medication may be aggravating any symptoms.
How to Avoid Nutritional Deficiencies if You’re Managing Celiac Disease
One complication that often arises from celiac disease is nutrient deficiencies. “The severity of the inflammatory reaction in the intestine, and how much of the intestine is affected, influences how someone absorbs nutrients,” says Bertiger.
Bertiger points out that while people with celiac can be deficient in a range of vitamins, most commonly he sees B12, calcium, iron, and vitamin D. (Though so many people, especially in northern climates, are vitamin D deficient that this is often seen across the board in people with celiac and those who don’t have it.) Along with those, Mukherjee often sees deficiencies of zinc, folic acid, and carnitine, a nutrient that helps the body produce energy. (8)
Problems with macronutrients can pop up as well. “In worse cases of celiac disease, patients cannot absorb and digest fats very well, so they may have diarrhea filled with fat,” Bertiger says. In that case, someone won’t absorb calories very well, so weight loss and malnourishment become legitimate concerns.
Iron deficiency is especially telling. “Many people become iron deficient as the first sign of celiac disease,” says Bertiger. “When patients are mildly anemic, one of the first tests we give them is for celiac,” he adds.
The first course of action is to treat celiac with a gluten-free diet. It’s best to meet with a registered dietitian who specializes in celiac and who can assess your diet, provide guidance on what to eat, and help you meet your nutrient recommendations to correct deficiencies. “He or she can also identify all the nooks and crannies in the world that gluten hides,” says Bertiger.
To find a dietitian if you don’t already have one, check out EatRight.org.
Foods You Can Eat if You’re Managing Celiac Disease
While the risks of gluten exposure and the list of foods you can’t eat may seem daunting, know that there are so many foods you can eat without risk if you can’t consume gluten. The following can be mainstays of your diet: (5)
- Fruits and vegetables
- Beans and lentils
- Nuts and seeds
- Fresh (unprocessed) meat and fish
- Dairy products (still, read the label)
- Rice and potato flour
Top Foods to Eat to Help Avoid Nutritional Deficiencies Common in People With Celiac
To help restore vitamin and mineral levels, doctors will often recommend foods rich in these nutrients, as well as supplements (more info below). Here are some great gluten-free sources of these common shortfall nutrients in people with celiac:
Iron Beef (always choose unprocessed sources), spinach, white beans, dark chocolate, lentils, tofu, chickpeas, and cashews (9)
Vitamin D Fortified dairy (yogurt, milk), fortified nondairy milk (soy, almond), fortified orange juice, sardines, salmon, and eggs (10)
Calcium Dairy, nondairy milk, salmon, sardines, kale, bok choy, tofu (prepared with calcium), fortified orange juice, oranges, and dried figs (11)
B Citamins Sunflower seeds, beans, lentils, spinach, mushrooms, chicken, broccoli, asparagus, and lentils (12)
Zinc Beef, Alaska king crab, lobster, pork, dark meat chicken, and cashews (13)
Best Supplements for People With Celiac Disease
If you have recognized nutrient deficiencies, your doctor may advise that you take one or more of the following supplements. Keep in mind that once you restore these nutrient levels and your intestines heal, you’ll likely no longer need to take that specific vitamin or mineral. “Many nutrients have store houses in the body; once you replete the stores, you can go off the supplement,” says Beringer.
Your doctor should also monitor you periodically to ensure that your body is properly nourished, adds Mukherjee. Don’t supplement unless recommended by your doctor or registered dietitian. Your doctor may advise:
- Vitamin D
Mukherjee often advises people with celiac that they’ll be taking a daily high-quality multivitamin for life. Depending on your nutrient levels, a multivitamin can often take the place of these individual supplements, she says.