Ask Shelley Case: Getting the Facts about Celiac Disease & the Gluten-Free Diet

Question: Can you share a few quick facts about celiac disease and the gluten-free diet? I would love to pass this info along to family members & friends who want to learn more about my daughter’s diagnosis.

Answer: May is Celiac Awareness Month so it’s a great time to share many facts about the disease and its treatment – the gluten-free diet.

* Celiac disease (CD) is an inherited autoimmune disease that affects 1:100 people. The disease can develop at any age including the elderly. It is twice as common as Crohn’s, ulcerative colitis and cystic fibrosis combined. 

* Consumption of gluten, found in the grains wheat, rye and barley, damages the tiny finger-like projections called “villi” that line the small intestinal tract. As a result, nutrients from foods, especially iron, calcium, vitamin D and folate, cannot be absorbed through the villi and into the bloodstream. A variety of nutritional deficiencies can occur over time. Gluten not only affects the gastrointestinal system but many other organ systems in the body.  This can lead to a wide range of symptoms that vary from one person to another. Some individuals may only present with a few symptoms or have none at all, while others can have numerous symptoms.

* Symptoms can include nausea, bloating, gas, abdominal pain, diarrhea or constipation (or both), lactose intolerance, weight loss (note-CD can also occur in obese individuals), mouth ulcers, extreme fatigue, irritability, bone and joint pain, easy bruising of the skin, swelling of the ankles and hands, menstrual irregularities, elevated liver enzymes, migraine headaches, depression and ataxia (balance and coordination difficulties). Children may also have delayed growth, dental enamel defects and concentration and learning difficulties.

* Another presentation of CD is a skin condition called dermatitis herpetiformis (DH). It is characterized by an intense burning, itchy rash that is symmetrically distributed. Areas affected can include the elbows, knees, back of the neck and scalp, upper back and buttocks. Initially, groups of small blisters are formed that soon erupt into small erosions. Most people with DH will also have varying degree of small intestinal villous atrophy, although many will have no bowel complaints. For more information about DH check out this link.

* CD can also occur more frequently in other conditions such as type 1 diabetes, autoimmune thyroid disease, autoimmune liver disease, Down syndrome, Turner syndrome and selective IgA deficiency.

* Untreated CD can result in nutritional deficiencies; osteoporosis; reproductive complications such as infertility (in both men and women) and miscarriage; development of other autoimmune disorders and an increased risk of gastrointestinal cancers.

* Delay in diagnosis is common. Studies in the US and Canada have found that it can take over 10 years before an accurate diagnosis is made. Many individuals are frequently misdiagnosed with other conditions such as irritable bowel syndrome, ulcers, allergies, chronic fatigue syndrome and fibromyalgia prior to getting the correct diagnosis.

* There are specific blood screening tests that can be used to screen for CD, however the only definitive test for diagnosis is a small intestinal biopsy. Diagnosis for DH is a skin biopsy from unaffected skin adjacent to the blisters or erosions. In DH, an intestinal biopsy is not essential if the skin biopsy is positive.

* First degree relatives (parents, siblings and children) of individuals with CD have a higher risk of developing the disease so they should be screened for CD. For more information check out this link.

* A gluten-free diet should never be started before the blood tests and biopsy are done as this can interfere with making an accurate diagnosis.

* The only treatment for CD is a strict gluten-free diet for life. All forms of wheat, rye and barley must strictly be avoided, including spelt, kamut, einkorn, emmer, faro, durum, couscous, semolina, bulgur and triticale. Barley malt, barley malt extract, barley malt flavor, brewer’s yeast, malt vinegar, as well as barley-based ale, beer and lager must also be avoided. Here is a more detailed list of foods allowed, to avoid and to question.

* Gluten is found in a wide variety of foods such as breads and other baked products, cereals, pastas, soups, sauces such as soy sauce which is often made from wheat and soy, seasonings, salad dressings, snack foods, prepared meats (e.g., deli meats, hot dogs, hamburger patties, imitation seafood), beer, flavored coffees and teas, some candies (e.g., licorice), chocolates and chocolate bars, as well as some nutrition supplements and medications.

* The protein in oats was originally thought to trigger the same toxic reaction as wheat and other gluten-containing grains. Research in Europe and the US over the past 15 years has revealed that consumption of moderate amounts of oats is safe for the majority of children and adults with celiac disease. Most of these studies used pure, uncontaminated oats, but it should be noted that a small number of individuals with celiac disease may not tolerate pure oats. The mechanism causing this intolerance has yet to be established. Before adding pure, uncontaminated oats to your diet, talk to your doctor and dietitian. Most authorities recommend that individuals with CD be well established on the gluten-free diet, the celiac antibodies have returned to normal and symptoms resolved. For more information about the safety of oats check out this link.

* A wide variety of foods that are naturally gluten-free include plain meat, poultry, fish, eggs, legumes, nuts, seeds, milk, yogurt, cheese, fruits, vegetables, as well as many gluten-free flours, cereals and starches that can be substituted for wheat, barley and rye. Distilled alcoholic beverages, wine and gluten-free beer made from buckwheat, millet, rice or sorghum are also allowed.

* Amaranth, buckwheat, corn, flax, Indian ricegrass (Montina), legume flours (bean, chickpea/garbanzo bean, pea, lentil), mesquite, millet, nut flours, potato flour, potato starch, quinoa, rice, sago, sorghum, soy, tapioca and teff are gluten-free options.

* A growing number of gluten-free specialty products from companies in the USA, Canada and Europe are available in health food and grocery stores, as well as mail order companies. Examples include ready-to-eat baked products (e.g., breads, buns, bagels, muffins, cakes, cookies, pies, pizza crusts), baking mixes and specialty flours, hot and cold cereals, crackers, snack foods, entrees, pastas (corn, legumes, quinoa and rice), bread crumbs, coating mixes, gravy mixes, soups, sauces, communion wafers, ice cream cones, snack bars and gluten-free beers.

* Many gluten-free products are made with refined flours and starches such as white rice flour, tapioca starch, potato starch and/or cornstarch which are lower in iron, B vitamins and fiber. Choose more nutritious ingredients such as amaranth, brown rice flour, buckwheat, flax, Montina™, nut flours, quinoa, legume flours (e.g., garbanzo/chick pea, Garfava™, yellow or green pea, bean {black, cranberry, soy} and teff when preparing or purchasing gluten-free foods. In addition look for gluten-free products that are enriched with vitamins and minerals.

* It is recommended to consult with a registered dietitian with expertise in CD and the gluten-free diet. The dietitian will do a nutritional assessment, provide nutrition education and practical information to help you successfully manage the gluten-free diet.

* Join a celiac group for additional support and encouragement is also important. Here are links to celiac organizations in the US and Canada.

* There are many excellent books, cookbooks, websites and other resources for those following a gluten-free diet. Check out Gluten-Free Diet: A Comprehensive Resource Guide-Revised and Expanded Edition 2010. It is filled with detailed information about the diet, foods and ingredients allowed and to avoid, meal plans, recipes, cooking hints, substitutions, label regulations, nutritional information and practical strategies for healthy gluten-free living, over 3100 gluten-free specialty foods, a directory of more than 270 American, Canadian and international companies, resources, websites and more!


Ask Shelley Case is a feature of It is published the second Tuesday of each month. Shelley Case is a Registered Dietitian, Consulting Dietitian, Speaker and Author of Gluten-Free Diet: A Comprehensive Resource Guide. Visit Shelley and get more gluten-free tips & info at:

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8 Responses to “Ask Shelley Case: Getting the Facts about Celiac Disease & the Gluten-Free Diet”

  1. Jeannie Says:

    I’ve been diagnosed since 2003 and this is the best article I’ve seen in a long time. Nice job!

  2. Vanessa Hadley Says:

    I am new to the gluten-free way of life. I have found a few things that curb the carb cravings. I don’t know if you can list products by name. Thank you for all your info.

  3. Tammy Says:

    Thank you so much for this article! This article referred to finding a good dietician who is proficient with CD. Is there a list of dieticians somewhere? I am having problems finding one near Greenville, SC. Thanks!

  4. Shelley Case, RD Says:

    A colleague of mine, Tricia Thompson, RD has a website listing dietitians in the US with celiac experience. Here is the link:

    Here is a RD for Greenville:

    Susan Watson, MS, RD, LD
    HeartLife and Diabetes Self-Management Program, Greenville Hospital System, Greenville, South Carolina 29607
    Phone: 864-455-8722

  5. Michele Gordon Says:

    Shelly, Nice Article! My daughter, Katie, was diagnosed a litte more than a year ago and is now following a strick GF diet. My questions, could she be affected by inhaling gluten? There was a science experiement using lots of wheat flour in her classroom and she became very sick. Is this possible to feel sick from inhaling it?

  6. Ming Bartosh Says:

    nice topic, thank you so much <3

  7. Shelley Case, RD Says:

    There was a case report in the New England Journal of Medicine (356;24 http://www.nejm.2548 org june 14, 2007) about non responsive celiac disease because of inhaled gluten. Two farmers with celiac disease following a strict gluten-free diet who fed cattle with a wheat and barley containing feed continued to have elevated celiac antibody levels and villous atrophy. Wearing a mask resulted in resolution of symptoms, decreased antibody levels and healed villi in one farmer and the other farmer had a resolution of symptoms. The physicians concluded that individuals with a farming background with celiac disease should wear a mask and limit exposure to feeding animals to reduce exposure to inhaled gluten. This can “markedly reduce symptoms and improve histological abnormalities.” So it is possible that inhaled gluten can make someone sick especially with repeated exposure.

  8. Maaike Asselbergs Says:

    Thank you, Shelley, for this wonderfully comprehensive article. I don’t know how you manage to keep up with the science of CD and HD along with your writing, touring and other commitments. We’re lucky to have you as such a fabulous resource.

    Some information I’d like to share about vitamin D absorption: I have not been able to absorb vitamin D intestinally. After testing at a very low value three years ago, two years of oral supplements in the 2-3000 daily units range failed to raise it more than a fraction. During the last year I experimented (with advice from my pharmacist and family doctor) with a topical application of 5000 units of vit D drops. It had no effect; actually my vitamin D value dropped lower than it had been 3 years ago. Again thanks to my pharmacist’s diligence (and collaboration with my family doctor) I am now receiving weekly IM injections of a vitamin D compound that my pharmacist prepared. I am receiving 100,000 units in each injection every week for ten weeks. I am crossing my fingers that this will work and improve my health and general well-being. For those interested in the science behind this, here is the study my pharmacist referenced:
    Terrence H Diamond, kenneth W Ho, Peter G Rohl and Matthew Meerkin: ‘Annual intramuscular injection of cholecalciferol for treatment of Vitamin Deficiency: Efficacy and Safety Data’ MJA Volume 183 Number 1.4 July 2005.

    I hope this is of interest.

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