Helping Your Patients with Celiac Disease
The primary care community plays a pivotal role in identifying individuals at high risk for celiac disease, performing serological testing as a first step to diagnosis, and monitoring them over time to detect any associated conditions and nutritional deficiencies. Once diagnosed, the National Institutes of Health (NIH) Consensus Statement on Celiac Disease recommends the following five key elements to celiac disease management:
- Consultation with a skilled dietitian
- Education about the disease
- Lifelong adherence to a gluten-free diet
- Identification and treatment of nutritional deficiencies
- Access to an advocacy group
- Continuous long-term follow-up by a multidisciplinary team
As your partner in helping you to facilitate and fulfill these five important elements, we provide you with information and resources.
Share Helpful Resources
For more information about celiac disease and the gluten-free diet, your patients can download a Getting Started Guide from the National Foundation for Celiac Awareness.
Other resources your gluten-free patients may be interested in include:
Talk About the Gluten-Free Diet
Left untreated, celiac disease can result in further complications, including osteoporosis, infertility and malignancies, increased mortality and a decreased quality of life. Because the gluten-free diet is the only treatment currently available, it is vitally important to educate patients about living gluten free for a lifetime.
The registered dietitian is an integral part of the multi-disciplinary team. The diagnosing physician should immediately refer patients to a dietitian highly knowledgeable about the gluten-free lifestyle to monitor their adherence to the gluten-free diet and provide guidance on a meal plan that ensures the patient’s particular nutrition needs are being met. Until the patient sees a registered dietitian, it is important that the physician(s) provides the patient with a basic understanding of the gluten-free diet and that it must be followed strictly.
What is Gluten?
Gluten is the name for the proteins found in all forms of wheat, barley and rye. Gluten peptides cross intact into the submucosa of the small intestine and trigger an inflammatory reaction in patients with celiac disease, causing damage and preventing nutrients from being absorbed into the bloodstream. Eating any amount of gluten, no matter how tiny, can cause damage to the villi of the small intestine. Less than 50 mg of gluten, the equivalent of less than 1/30th of a slice of bread, can cause significant and sustained mucosal inflammation.
Corn gluten is not toxic to people with celiac disease and can be consumed.
What is the Gluten-Free Diet?
The gluten-free diet is a lifelong adherence to strictly avoiding gluten in all its forms. Gluten-containing forms of wheat include, but are not limited to: bulgur; couscous; durum; farina; farro; kamut; matzoh; semolina; spelt; and triticale. Gluten-containing forms of barley include but are not limited to: brewer’s yeast; malt; malt extract/syrup/flavoring; and malt vinegar. Rye is the third gluten-containing grain to be avoided on the gluten-free diet. It is usually stated simply as rye on ingredient labels.
Like all healthful diets, the gluten-free diet should consist mostly of fresh, wholesome foods including: fruits; vegetables; lean meats, poultry and fish; gluten-free low-fat dairy products; beans; nuts; and seeds. The significant difference is substituting gluten-free grain foods for gluten-containing products.
It is important to note that processing can add gluten to a food that is naturally gluten-free. This is particularly true for dairy products. Ingredients are often added to fresh cheeses for flavoring and/or texturing purposes. It is important to read dairy product labels to determine if gluten ingredients have been added.
Are Oats Gluten-Free?
While oats do not inherently contain gluten, celiac experts and organizations recommend avoiding commercially available oats and oat products as they are often contaminated with wheat and barley. Research studies examining the safety of pure, uncontaminated oats has confirmed that most individuals with celiac disease can consume small amounts of pure, uncontaminated oats each day. A diet consisting of up to 50 grams of dry gluten-free oats (per day is considered safe and helps compliance with the gluten-free dietary pattern. This is equivalent to approximately 1/4 to 1/3 cup of dry oats, depending on the type. Please advice your patient to check the product’s serving size to determine the exact gram to cup equivalent.
There is, however, a small population of individuals with celiac disease who cannot tolerate even pure, uncontaminated oats. Therefore, the introduction and inclusion of oats into the diet should be gradual and requires medical attention. It is suggested that the introduction of pure, uncontaminated oats to the gluten-free diet be done under the supervision of a healthcare professional to determine one’s individual tolerance. Advise your patients to look for “pure, uncontaminated oats,” “gluten-free oats,” or “certified gluten-free oats” when shopping. (Note: Celiac disease serology can also be used to monitor antibodies during oat introduction).
Gluten-Free Grains and Flours
The following gluten-free grains and flours are allowed: amaranth; buckwheat; corn bran, meal, starch and flour; bean flours, including garbanzo (chickpea), fava, lentil and pea; nut flours, including almond, peanut, chestnut and hazelnut; potato starch and flour; pure, uncontaminated oats, oatmeal and oat flour; quinoa and quinoa flakes; brown, wild and white rice and rice flours; sorghum; soy flour; tapioca starch; taro; and teff.
Hidden Sources of Gluten
There are the obvious sources of gluten, such as breads, cereals, baked goods, pasta and beer. However, there are also many hidden sources of gluten in the food supply, particularly packaged /processed foods. Hidden sources refer to products with gluten-containing ingredients, but which may be difficult for consumers to identify within the ingredients statement. Careful review of the ingredients statements on all food products not certified gluten-free is important for avoiding gluten. In addition to wheat, barley and rye, individuals should look for malt, brewer’s yeast and oats (unless certified gluten-free) on ingredient labels. Some examples of hidden sources of gluten may include:
- Baby food
- Candy, including chocolate and licorice
- Flavored coffees and teas/tea mixes (hot and iced)
- Soy sauce
- Gravies, sauces and marinades
- Processed meats
- Malted milk shakes
- Salad dressings
- Processed/packaged foods
- Mixed spice blends
- Ice creams with add-ins
- Spreads and dips
- Medications and supplements
Watch for Nutrition Deficiencies
Due to damage to the intestinal lining and malabsorption of nutrients, nutrition deficiencies are common in patients with celiac disease. While patients can be deficient in any number of nutrients, the most common deficiencies include:
- Vitamin D
- Vitamin B12
It is important to note that many celiac patients experience a secondary lactase deficiency until their intestinal linings heal and so cannot tolerate lactose-containing foods. These patients need to be even more careful about getting enough calcium and vitamin D in their diet.
For a full list of recomennded serological tests to perform during celiac disease management please go to Featured Tests.
Screen for Associated Conditions
Patients with celiac disease have a greater likelihood of experiencing other conditions.
The conditions commonly associated with celiac disease include, but are not limited to: depression; Down syndrome; infertility; intestinal cancer; juvenile idiopathic arthritis; liver disease; migraine; osteoporosis/osteopenia; peripheral neuropathy; thyroid conditions such as Hashimoto’s and Graves disease; Type 1 Diabetes; and other autoimmune disorders.
It is important to regularly screen for symptoms of these conditions in your celiac patients and conduct prompt testing should there be any concerns. In the same vein, it is often the case that some of the above conditions are diagnosed before celiac disease, such as Type 1 Diabetes. Therefore, it is important to also screen for symptoms of celiac disease in patients presenting with these conditions.
Non-Responsive Celiac Disease
Non-responsive celiac disease affects 10% to 19% of those diagnosed with celiac. It can be defined as primary or secondary. Primary non-responsive celiac disease consists of those individuals who initially did not demonstrate a positive response to the gluten-free diet within six months of diagnosis. Secondary non-responsive celiac disease defines those who initially did respond to the gluten-free diet as indicated by symptoms and/or biochemical indices, but that have relapsed after normalization.
A multitude of causes must be considered and can include the following:
(inadvertent) Gluten exposure
Irritable bowel syndrome (IBS)
Small intestinal bacterial overgrowth (SIBO)
Refractory celiac disease
Food allergies and intolerances
Approximately 35% to 50% of cases occur in response to inadvertent gluten ingestion, making it the most common cause of non-responsive celiac disease. Aside from oral gluten, inhaled gluten has reportedly provoked non-responsive celiac disease as well.
How is non-responsive celiac disease diagnosed?
First, confirmation of the initial diagnosis of celiac disease must be sought.
Order appropriate testing for differentials of high suspicion. These may include lactose tolerance and lactulose to assess for small intestinal bacterial overgrowth. Given the high prevalence of gluten exposure, celiac disease serology tests should also be ordered.
In the case where gluten ingestion, including that from often overlooked sources such as medications and communion wafers, coexisting or secondary conditions, and complications are ruled out, a work up for refractory celiac disease is warranted.