Celiac disease is an autoimmune disease that is triggered by eating gluten. Celiac disease damages the small intestine, making it difficult for the body to absorb much-needed nutrients. Approximately 1% to 3% of the general population is estimated to have celiac disease, but a recent study suggests that people with Down syndrome are six times more likely to develop celiac at some point during their lives. Celiac disease can cause intense pain and major long-term health impacts. It is very important for people with Down syndrome to learn to recognize the symptoms and to follow a specific treatment protocol to maintain a good quality of life.

Dr. Marisa Stahl, a pediatric gastroenterologist at the Colorado Center for Celiac Disease, states that the wide variance of symptoms and similarities with other autoimmune and gastrointestinal disorders makes it hard to diagnose celiac disease, especially with children who may have difficulty expressing their symptoms. Celiac disease can develop at any age and having a diagnosis may suggest that you have a predisposition for developing other autoimmune diseases.

The most common symptoms of celiac disease include:

  • Abdominal bloating and pain
  • Chronic diarrhea
  • Vomiting
  • Constipation
  • Brain fog or headaches
  • Weight loss or poor weight gain
  • Irritability
  • Delayed growth or puberty
  • Fatigue
  • Anemia
  • Behavioral changes

Celiac Disease is not necessarily limited to these symptoms. Dr. Stahl explains that it can manifest as other symptoms of autoimmune disease. She added, “It can affect every system in your body. Continued exposure to gluten over time can lead to long-term consequences, such as poor growth, vitamin deficiencies, neuropathies, osteoporosis, and certain intestinal lymphomas, just to name a few.” It is also possible to have celiac and not experience any symptoms, a condition known popularly as “silent celiac.” Even an asymptomatic form of celiac disease can damage the small intestine, so screening is important for those who may be at higher risk.

The only treatment for celiac disease is a total and lifelong gluten-free diet. This diet consists of not only eating gluten-free food but also embracing a gluten-free lifestyle. It’s important to pay attention to the labels and ingredients of the products you use daily, weekly, monthly, etc. like shampoos and toothpastes, as many of them contain gluten.

Dr. Stahl says that while there is no consensus on screening guidelines for celiac disease specifically for people with Down syndrome, her center recommends screening to begin at 3 years of age, unless symptoms begin to develop earlier than that. She also notes that screening should continue at intervals because, as previously stated, celiac disease can develop at any age. It is important to keep in mind that these symptoms can also indicate other gastrointestinal or autoimmune conditions, and that you should consult your doctor if you suspect your or your child’s symptoms might be caused by celiac. Dr. Stahl states that it is not advisable to try implementing a gluten-free diet on your own without a clinical diagnosis and support from medical professionals and a dietitian. You could be eliminating important sources of fiber and other nutrients your body needs without the proper education. She also recommends that anyone diagnosed with celiac disease, especially those with Down syndrome, see a psychologist.

The information in this article was originally written by the GLOBAL Down Syndrome Foundation for the article “What You Should Know About Celiac Disease and Down Syndrome” that can be found here: https://www.globaldownsyndrome.org/what-you-should-know-about-celiac-disease-down-syndrome/

Excerpts from the article “Down Syndrome and Celiac Disease” written by the Gluten Intolerance Group were also referenced. https://gluten.org/2021/03/18/down-syndrome/