Most likely you know someone who has celiac disease, whether it’s a family member, a friend or your child’s classmate. Celiac disease is actually quite common. Roughly 1 in 133 people have celiac disease, but more than half of all people with celiac disease are undiagnosed.
What is celiac disease
Celiac disease is an autoimmune disease, which is triggered when gluten is ingested in certain people that carry genetic risk factors. Once the immune system recognizes gluten as a problem, it attacks the lining of the intestines. It's not just feeling sick or having a stomachache when eating gluten, it actually causes damage to the small intestine responsible for absorbing nutrients from food. When damaged, the body can't absorb the nutrients it needs.
No one is born with celiac disease, but it can develop at any time in a person’s life. Childhood is the most common time to start showing signs of celiac disease.
Symptoms
Symptoms vary from person-to-person. Some people may not have any GI symptoms at all, while others are very ill. It really is different for everyone.
Classic GI symptoms include chronic abdominal pain, nausea, vomiting, diarrhea or constipation. Many children with celiac disease also have a hard time growing or gaining weight. There can also be symptoms outside the GI tract as well, which includes headache, fatigue, joint pain, and skin rash.
Celiac disease is more common in children with type 1 diabetes, thyroid disease, Down syndrome, Turners syndrome and those with a family history of celiac disease.
Diagnosis and testing
If you are worried you or your child has celiac disease, it is important to discuss your concerns with your primary care doctor. A simple blood test (Tissue Transglutaminase tTG-IgA) is the first step in evaluating for celiac disease, but this test needs to be done when a child is still eating gluten. If the blood test comes back positive, then a consult with a gastroenterologist and an upper endoscopy with biopsy of the small intestine is needed to confirm the diagnosis. A biopsy of the small intestine is still the best way to be sure about the diagnosis of celiac disease as the blood tests can sometimes give false positive results.
The longer someone is untreated the more likely that person is going to have another autoimmune condition, such as Type 1 diabetes or thyroid issues. Uncontrolled symptoms can also cause nutritional deficiencies, iron deficiencies, and osteoporosis.
If someone in the family has been diagnosed with the disease it’s important for all other siblings to start being tested every 2 or 3 years even if they don’t have symptoms as the genes that put them at risk for celiac disease are passed through families.
There are two genetic markers called HLA-DQ2 and HLA-DQ8 that make a person predisposed to celiac disease. However, just because a person carries one of these markers doesn’t mean they will have celiac disease, it just means they’re at risk. If siblings test negative for these markers, then they are very unlikely to ever develop celiac disease and will not need repeated testing.
Treating celiac disease
The mainstay treatment for celiac disease is a strict gluten-free diet, which helps manage symptoms and promotes intestinal healing. The good news is damage to the lining of the intestines is reversible after eating gluten free for 6-12 months, but to stay healthy the diet must be followed for a lifetime.
Meeting with a dietitian that has experience with the gluten-free diet to treat celiac disease is essential. Individuals with celiac disease need to avoid all traces of gluten, down to the very last crumb. It’s also important to make sure kids are getting enough vitamins, minerals and healthy nutrition in their new diet.
When to go on a gluten-free diet
If you’re concerned your child has celiac disease, it’s important to see a specialist before starting a gluten-free diet. There’s a couple of reasons we recommend this approach. First, while removing gluten may be enough to help the child feel better, the child hasn’t been properly tested, which is necessary to confirm if the child has an autoimmune disease or another medical condition that mirrors celiac disease.
Second, if a child has not been properly diagnosed, that child probably isn’t adhering to the diet as strictly as they should. It’s not unusual for families to go halfway gluten free at home or only gluten free when the child isn’t feeling well. This can cause the immune system to stay active and increase the risk of autoimmune or nutritional issues down the road.
Eating gluten free
Eating gluten free is becoming more and more mainstream, and it’s getting easier to find gluten-free foods at the grocery store and menu items at restaurants. However, even with all these changes, it’s still a daily challenge to eat gluten free.
Home
It’s much easier to eat gluten free at home than anywhere else because the family can control what food is in the house and how the child is being exposed to gluten. Take peanut butter for example. Someone with celiac disease needs a separate jar, because if a knife is used to spread peanut butter on bread and then put back in the jar – the peanut butter is now contaminated with gluten.
We encourage our families to look at a celiac diagnosis as an invitation back into the kitchen. It is a chance to start preparing fresh, healthy foods for the whole family.
Some families will choose to get most of the gluten out of the house or only make gluten-free meals, so the home becomes a safe place for the kids to eat all the time. For family members that don’t have celiac disease, there’s nothing wrong with eating gluten free. It’s not an unhealthy way to eat as long as it’s a balanced diet.
School and Social Gatherings
There has been some resistance because gluten-free has become trendy, so parents need to be strong advocates for their child in the school setting to make sure the child is staying safe. We encourage parents to be vocal and help educate the child’s classroom and families.
For other social outings, it’s best to bring your own gluten-free treats to parties to avoid potential mix-ups and gluten-free dishes to any potluck. Bringing a special gluten-free treat will guarantee your child has something safe to eat but still feels included in the celebration.
Restaurants
Restaurants are trying to offer gluten-free options, but the food isn’t always prepared correctly. Some restaurants are still cross-contaminating food whether it’s because employees are not changing gloves, food is fried in shared oil or gluten-free noodles are being cooked in the same water as the regular noodles. Ask in advance how the food is prepped and cooked.
Follow-up care
Follow-up care is essential. Kids need to see a specialist who is well-versed with celiac disease at least once a year to make sure the child is growing and to monitor celiac blood tests and vitamin deficiencies. It’s also important to meet with a dietitian to make sure nutrition is on track.
Learn more about the Celiac Program at Children’s Mercy.