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For people with Down syndrome, family members, caregivers and professionals.

Celiac Disease

September 2017 | Robert Campbell, DO - Family Medicine Resident, Advocate Lutheran General Hospital

What is celiac disease?

Celiac disease is characterized by inflammation of the lining of the small intestine that occurs when the intestine is exposed to gluten (see more on gluten below). Specifically, the inflammation leads to atrophy of the intestinal villi (which are the microscopic finger-like projections in the small intestine which are responsible for absorption of nutrients), resulting in malabsorption.

Why is it important in Down syndrome?

Celiac disease is an autoimmune disorder, like hypothyroidism or type 1 diabetes. Overall, autoimmune disorders are more common in people with Down syndrome (DS) and this trend is seen with celiac disease. Approximately, 1% of Americans in the general population are affected by celiac disease whereas 8% of people with DS suffer from celiac disease.

What are the signs and symptoms of celiac disease?

  • Gastrointestinal (GI)

    • Diarrhea

    • Weight loss

    • Increased gas

    • Constipation

    • Changes in appetite

    • Abdominal discomfort

    • Bloating

  • Rest of body

    • Muscle cramps, dizziness, nervousness, weakness, fatigue, lack of energy, seizures, mood changes

    • Dermatits hepatiformis

      • Extremely itchy rash with associated blisters that are seen on the elbows, knees, scalp, back, and buttocks

      • Their presence indicates that a patient has celiac disease

How is celiac disease diagnosed?

When patients’ present with symptoms concerning for celiac disease, the typical process for diagnosing celiac disease is to start with blood testing. Specifically, the anti-tissue transglutaminase IgA antibody test (tTG-IgA) is performed. If this blood test comes back positive, the definitive test to diagnose celiac disease is an esophagogastroduodenoscopy (EGD, a scope passed through the mouth down to the small intestine), in which samples from the intestine are taken. However, there are several complications with this diagnostic process in patients with DS. Recent research has shown that the tTG-IgA blood test is not as accurate in diagnosing celiac disease in patients with DS as compared to the rest of the population. Specially, it was found that in almost half of the patients with DS who tested positive for tTG-IgA, an EGD revealed the patient did not have a diagnosis of celiac disease. In addition, during an EGD, patients are placed under anesthesia and anesthesia complications are more common in patients with DS. Due to all of these problems with the diagnostic process, some people may elect to go gluten-free without the testing in order to try to control the symptoms, but a gluten-free diet can be expensive and difficult to adhere to. Therefore, it is important to discuss all the options with your physician or health care provider to determine what the best diagnostic and management strategy is on a patient-to-patient basis.

What are the long-term consequences of celiac disease?

The symptoms of celiac disease can be treated by following a gluten-free diet. Strict adherence to the diet generally results in resolution of all the symptoms. There is an increased risk of lymphomas, hepatobiliary cancer, and intestinal cancer in untreated celiac disease (although the risk is not as well studied in people with DS). This risk may be decreased by following a gluten-free diet.

What foods should be avoided?

Gluten is a protein found in wheat and other foods and it helps food maintain its shape. The main categories of food that need to be avoided in order to be gluten-free are wheat, barley, and rye. Common foods that contain these ingredients are listed below:

  • Wheat Avoid wheat and foods that contain gluten

    • Breads

    • Baked goods

    • Pasta

    • Salad dressings

  • Barley

    • Malt

    • Soup

  • Rye

    • Cereals

It is also important to read the labels on food because gluten can be hidden in unexpected places. Look for “gluten-free” labels. “Wheat-free” foods may still contain gluten. Also, pay attention to the allergens and ingredients for any food.

What foods can be eaten?

  • Meats, seafood

  • Fruits, vegetables

  • Nuts

  • Dairy

  • Some grains:

    • Rice

    • Corn

    • Soy

    • Potato

    • Quinoa

    • Oats

Recipes:

You can still eat the foods you love by substituting out flour. A few ideas are listed below, but there are many great recipes, and a list of gluten-free foods, at www.celiac.org.

  • Pizza (cauliflower rice as crust)

  • Chicken tenders (coat in quinoa)

  • Carrot cake (coconut flour)

  • Cheesecake (ground pecans)

  • Muffins (almond flour)

Resources:

Pelkowski, Timothy, and Anthony Viera. “Celiac Disease: Diagnosis and Management.” American Family Physician, 15 Jan. 2014, www.aafp.org/afp/2014/0115/p99.html

Chicoine, Brian, and Dennis McGuire. “Chapter 11: Gastrointestinal and Liver Problems.” The Guide to Good Health for Teens and Adults with Down Syndrome, Woodbine House, Inc, 2010, pp. 131-136.

Chicoine, Brian, et al. “The Utility of Anti-Tissue Transglutaminase Antibody-IgA (tTG-IgA) Testing for Celiac Disease in Adults with Down Syndrome.” American Journal of Clinical Medicine, vol. 10, no. 2.

Please note: The information on this site is for educational purposes only and is not intended to serve as a substitute for a medical, psychiatric, mental health, or behavioral evaluation, diagnosis, or treatment plan by a qualified professional. We recommend you review the educational material with your health providers regarding the specifics of your health care needs.

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