What You Should Know About Celiac Disease & Down Syndrome | Global Down Syndrome Foundation
What You Should Know About Celiac Disease & Down Syndrome

What You Should Know About Celiac Disease & Down Syndrome

What You Should Know About Celiac Disease & Down Syndrome

From Down Syndrome WorldTM 2021 Issue 3 of 4

Symptoms, Treatment, and Misconceptions


This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

WHAT IS CELIAC DISEASE?

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

MEGAN’S DIAGNOSIS

Megan Bomgaars, reality TV star and GLOBAL Q-Awardee, inspires people all over the world with her incredible advocacy. She’s known for her big personality and ability to move a room to tears with her powerful words. What many don’t know about this strong woman is that she also has celiac disease.

Megan’s mom, Kris Bomgaars, recalls when Megan’s doctors told her Megan was experiencing failure to thrive, a medical condition characterized by inadequate growth. She was small for her age and had chronic sinus infections. By the first grade, she was experiencing abdominal pain, vomiting, and constipation on an almost daily basis. Megan’s teachers told Kris that these symptoms were the result of school avoidant behavior and a bad attitude, but Kris didn’t buy it. “Well, I knew as a mom, and also as a special education teacher, that she actually really loved school, and she loved every subject in school,” Kris remembers. Kris noticed that Megan’s gastrointestinal symptoms consistently occurred after eating the school-provided lunches every day, which made her think that Megan was having a reaction to ingredients in the meals. It still took months of advocating for her daughter to get a diagnosis. “There was one week I took her to the pediatrician every single day because she was literally crying in pain.”

At first, Megan’s doctors diagnosed her with malrotation (a condition where the intestines do not form correctly), but when they performed surgery, they found that Megan’s small intestines had completely atrophied. It was only then that the doctors confirmed that Megan had celiac disease through a blood test and a biopsy.

LEARNING ABOUT CELIAC DISEASE

Megan’s story is a common one for people with Down syndrome who also develop celiac disease. Dr. Marisa Stahl, a pediatric gastroenterologist at the Colorado Center for Celiac Disease, says that the wide variance of symptoms and overlap with other autoimmune and gastrointestinal disorders (common in Down syndrome) makes diagnosing celiac disease difficult, especially with children who may have difficulty expressing their symptoms. Celiac disease can develop at any age and having a celiac diagnosis also may indicate 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

Any or all of these symptoms could indicate celiac, although Dr. Stahl notes that celiac can also manifest as other symptoms of autoimmune disease. She says, “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 have any symptoms, a condition known popularly as “silent celiac.”

Even asymptomatic celiac disease causes damage to the small intestine, so screening is important for those who may be at higher risk. There are two common tests for celiac disease: the first is a blood test, also known as the tTG-IgA Test. Because eating gluten causes an increase in certain antibodies for people with celiac, testing for these antibodies in the blood of someone who might have the disease often can point doctors in the direction of a diagnosis. If the blood test reveals an increase in those antibody responses, medical professionals will administer the second test, an endoscopic biopsy. This biopsy is a minor surgical procedure where a doctor will test a small part of the patient’s small intestine for signs of damage. The biopsy is currently the most common way to diagnose celiac disease. There are some special circumstances where the diagnosis may be made based on additional blood testing.

WHAT IS THE TREATMENT FOR CELIAC?

The only treatment for celiac disease is a total and lifelong gluten-free diet. This diet relies not only on eating gluten-free food but also on embracing a gluten-free lifestyle. Some forms of celiac are more sensitive and require elimination of all gluten-free products, but eliminating any ingestion of gluten is essential. As Megan learned through her journey with celiac, many shampoos, toothpastes, cosmetics, and even stickers contain gluten. Many medications have some form of gluten as one of their ingredients. Cross-contact is also an issue: the same kitchen equipment used to prepare meals with gluten cannot be used to prepare gluten-free food. Once Megan started her gluten-free diet (she also eliminated dairy), her symptoms disappeared, and she began to thrive in a way Kris had not seen before. She grew four inches over the summer, her previously frequent sinus infections ceased, and she no longer had the daily abdominal pain or other gastrointestinal symptoms that made school so difficult. Kris remembers being amazed at the transformation: “All it took was a diet change, and it changed the entire course of her life.” Megan does not remember life before the diagnosis, but she is very aware of the consequences of coming into contact with gluten based on a few accidental encounters over the years. Even the smallest contact will make her sick for days.

There is ongoing medical research for other treatments for celiac disease, including some promising medications, Dr. Stahl says, but none of them are currently as effective at preventing symptoms and long-term damage as a gluten-free lifestyle.

COMMON MISCONCEPTIONS ABOUT CELIAC

Because of the recent popularity of gluten-free diets over the past decade (especially due to high profile celebrities adopting this diet), there has been an exponential increase in the availability and awareness of gluten-free food. Restaurants like P.F. Chang’s (one of Megan’s favorites) have begun providing designated gluten-free menus with procedures to ensure no cross-contact. Kris notes that stricter labelling laws have also made it much easier to determine if a product is gluten-free, and because labels are more accessible, Megan has gained independence over her shopping and eating habits. There are even apps now where you can scan the barcode of a product, and the app will tell you if it contains gluten. Kris says that it is much easier now to navigate eating out than it was when Megan was first diagnosed. “I mean, in the beginning, I remember one time I asked for a gluten-free menu, and this poor server handed me a martini menu,” she recalls.

However, this newfound trend of gluten-free diets has also led to some misconceptions about celiac as well. Dr. Stahl believes that this is in part due to “a lot of celebrities who also follow a gluten-free diet because they perceive it as being healthier. As a result, there are a lot of restaurants that have developed, for instance, gluten-friendly menus, but they’re really not taking the strict precautions that you need to take in order to ensure serving safely gluten-free foods, things like cross-contact.” Kris says that at first, people sometimes believe that she and Megan follow a gluten-free diet as part of a fad, not realizing the serious consequences of Megan eating gluten. One of the more difficult challenges of Megan’s diagnosis was educating family members. She recalls asking, “Does grandma really understand what gluten is? Because for that generation, celiac disease really wasn’t that big of a deal.”

On the other hand, Kris said that some parents of Megan’s friends stopped inviting her to birthday parties or to other playdates because they were afraid of the consequences of accidentally feeding her gluten. “She didn’t get a lot of invitations until I started saying I’ll pack every ounce of food, you don’t need to worry about it. It’s not anaphylaxis, so it’s not like a peanut allergy.”Much of social life in the U.S. and around the world revolves around food and dining out, so it can be extremely difficult for people with celiac to maintain a social life if the people around them are not willing to learn or accommodate their dietary needs.

WHAT SHOULD I DO IF I THINK MY CHILD OR I MIGHT HAVE CELIAC?

Dr. Stahl notes that while there is no consensus on screening guidelines for celiac disease for people with Down syndrome, her center recommends that screening begin at 3 years of age, unless symptoms begin to develop earlier. She also notes that screening should continue at intervals because celiac disease can develop at any age. It is important to note that these symptoms could also indicate other gastrointestinal or autoimmune conditions; it is also important that you consult your doctor if you suspect your or your child’s symptoms might be caused by celiac. Trying to implement a gluten-free diet on your own without a diagnosis and support from medical professionals and a dietitian is not advisable, Dr. Stahl says. You could be eliminating important sources of fiber and other nutrients without the proper education. She also advocates that anyone diagnosed with celiac disease, especially those with Down syndrome, see a psychologist. Major changes in diet, especially if food is a source of comfort or social inclusion, can have a negative impact on mental health, so it is important that someone recently diagnosed with celiac develop support systems.

Kris recommends that if you or your child has recently received a diagnosis of celiac that you join a celiac support group. “The best advice I got was from other people who had celiac disease,” Kris shares. The one that Kris joined when Megan was first diagnosed helped her learn to read labels and other strategies for how to determine which foods were safe.

Megan says that her diagnosis doesn’t prevent her from enjoying food. She enjoys rice, sushi, gluten-free and dairy-free pizza, and making her own ice-cream sundaes.

To learn more about celiac and to find resources, please visit
celiac.org/about-celiac-disease/symptoms-of-celiac-disease

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