ARCHIVED: This resource has been archived. Please see our updated celiac disease article.
How is celiac disease treated?
The treatment for celiac disease is diet. It requires strict adherence to eliminating gluten in the diet.
How do I get started?
The recommended first step is a consultation with a dietitian/nutritionist who is knowledgeable about celiac disease and a gluten-free diet. Reviewing printed literature, internet material, and other sources of information is also very helpful. We have found interacting with other people with celiac disease to be extremely beneficial. Whether it be a support group or more informally, talking to and getting day-to-day advice from people who are living the gluten-free life is very helpful. Membership in a local celiac society is one way to meet this need.
Are there other treatments?
At this time, there are no other treatments for celiac disease but there are issues to address in addition to diet. Blood work testing for vitamin and mineral deficiency should be considered. Supplements with some vitamins and minerals might be indicated.
Poor calcium absorption can lead to osteoporosis. Therefore, a bone density test should be considered and treatment for osteoporosis (if indicated by the results).
Is the diet easy to follow?
Gluten is in a lot of foods so there are a number of foods that have to be avoided. Knowing that gluten is in wheat, barley, and rye, there are a lot of foods that more obviously have gluten such as bread, pasta, etc. However, gluten is also used in processing many foods so there are foods that one might think are gluten-free that contain gluten. It is very important that you become familiar with reading food labels. Reviewing lists of gluten-free and gluten-containing foods is also helpful. These are available in a variety of places. The Celiac Disease Foundation is one source.
Although following the diet can be challenging, there are more gluten-free foods available, more restaurants with gluten-free choices, and more information being shared about ways to make following the diet a natural part of daily life.
How can I get a person with Down syndrome to follow the diet?
Helping with food choices is an important first step (and to do that you must educate yourself first). It is also important to educate the person with DS as much as he/she is capable of. Several of our patients have a solid understanding of gluten-free foods. Others have benefited from using a small picture book with pictures of acceptable and unacceptable foods. The unacceptable foods have a line through them or some other designation. Storing pictures in smart phones might be a way for some to have access to a large number of pictures. Ongoing education and reminders (pictures are particularly helpful) is important. Encouraging participation in food preparation may also increase understanding.
Joan Medlen’s book The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy Lifestyles has good information on teaching people with DS about nutrition.