This one in an occasional series about children’s health issues. We know that many of our readers are parents and grandparents keenly interested in the health and well-being of children and grandchildren. We hope this series will provide useful health information you can share with your family.
The term Celiac Disease may be a fairly new addition to our medical vocabulary, but the condition was first described in 250 A.D., when Greek physician Aretaeus of Cappadocia wrote of patients he called “koiliakos,” which translates to “suffering in the bowels.”
Celiac Disease – sometimes called sprue or gluten-sensitive enteropathy – affects approximately 3 million Americans, about 1 percent of the population, although more than 80 percent of sufferers are misdiagnosed or undiagnosed. Because it so often goes unrecognized, and because the prevalence in childhood is about five times higher than in adulthood, Celiac is a disease parents and grandparents should be aware of and knowledgeable about.
All of us have villi – microscopic projections lining our small intestine. Villi allow for the absorption of nutrients into the body. For those with Celiac Disease, eating gluten causes an immune system reaction which damages or destroys the villi. In kids, the result can be diarrhea, decreased appetite, stomachache, bloating, poor growth, weight loss and anemia.
If Celiac Disease is suspected, a biopsy of the small intestine will likely be conducted. “It’s the gold standard for diagnosis,” says Dr. Bruce Grossman, a Vero Beach gastroenterologist with more than 25 years of experience. “It’s important that gluten is not restricted prior to the biopsy, as that could result in a false negative.”
If a parent insists they don’t want their child to undergo a biopsy, there is a blood test, called HLA, that looks for the genetic predisposition to Celiac Disease.
cognibiotics If those genes don’t exist, Celiac Disease can be virtually ruled out. However, Dr. Grossman says it’s an expensive test and may not be covered by insurance.
Some children with Celiac Disease have dental problems – grooves and pits can develop in their permanent teeth, and there can be changes in the tooth enamel, causing discoloration. Other children may be fatigued, irritable, or have skin rashes or mouth sores. Children with Celiac Disease are also at risk for weakened bones, due to poor absorption of Vitamin D.
Gluten is a protein found in wheat, rye, and barley. Eliminating gluten from the child’s diet is the only treatment for Celiac Disease; there is no medication that treats it or alleviates its effects, although vitamin supplements may be recommended. Celiac is a chronic condition – symptoms may come and go, but the disease stays.
“With a well-controlled diet, patients feel 100 percent better,” Dr. Grossman says. “The real problem is eating out.” He cautions that a restaurant may offer gluten-free food choices, but that doesn’t tell you about what’s happening in the kitchen. “They should be preparing the food separately – utensils, appliances, surfaces, cooking oil,” he says. Unfortunately, it is difficult to know for sure how carefully and consistently kitchens follows those guidelines.
When kids are diagnosed, it is often between the ages of 6 months and 2 years (when they get their first taste of gluten). Gluten is not only found in obvious places like cereals, bread, and breaded foods, but is often in other foods kids may like such as canned soup, cold cuts, frozen French fries, processed cheese, ketchup, commercially prepared chocolate milk, instant cocoa, ice cream, syrup, canned baked beans, pudding and hot dogs.
Fortunately, there are many tasty foods that are naturally gluten free; they include:
• Fresh fruits and vegetables
• Eggs and dairy
• Unprocessed meats and poultry
• Fish and seafood
• Beans, legumes, and nuts
• Rice, corn, and potatoes
There are also naturally gluten-free grains such as buckwheat, quinoa and millet, but they sometimes can get contaminated with wheat during processing. Only use them if the package is labeled “gluten free.” This also applies to the many foods that that are now made in gluten-free form, including soups, pasta, bread, cookies and crackers.
The government has recently provided help for parents who want to make sure their food purchases do not contain gluten; as of August 2014, any food labeled “gluten-free” must comply with the new FDA definition (less than 20 parts-per-million of gluten).
It’s important for parents and grandparents to support the whole child, which includes emotional and psychological needs. Here, briefly, are some strategies from the Celiac Community Foundation of Northern California; you can read the full text at www.celiaccommunity.org.
• Educate and support. Explain the condition in age-appropriate terms. Discover and try new recipes together. Use gluten-free foods the whole family can enjoy. Bring gluten-free snacks for the whole class, not just for your child. Consider going gluten-free yourself to support your child.
• Establish a network of peers for socializing outside of school. Find out if the families of your child’s closest friends are open to learning about celiac disease, equipping their kitchen with some gluten-free products, and monitoring cross-contact.
• Look for warning signs and seek services if needed. Signs that your child may be having difficulty coping include negative feelings or anxiety (low self-esteem, feeling alone or isolated, expressing general food-based anxiety) and social disengagement (deciding not to attend summer camp, discontinuing participation in sports, avoiding socializing in and out of school).
• Connect with the local or national community. Look for local support groups by searching on-line. (We found a website that’s both kid and parent friendly at www.celiaccentral.org.) Join one of the national nonprofit organizations; for example, the Celiac Disease Foundation, and the Celiac Sprue Association. Look for gluten-free camps, fairs and expos. Encourage your kids to volunteer in the community or virtually; they can help at gluten-free meetings, events or camps; educate their school nurse or classmates about the disease; or create their own blog.
• Integrate medical and psychological care. Doctors and parents tend to focus on the child’s physical health and providing a gluten-free diet. But according to Aaron Rakow, PhD, a clinical psychologist at Children’s National Medical Center in Washington, D.C., “the integration of behavioral and physical healthcare systems has the greatest power to promote change.” The recommended approach is to integrate psychological services with medical care by offering services at the point of diagnosis.
A few kitchen tips to avoid cross-contact with gluten (these are helpful for adults with Celiac too):
• Buy separate appliances, and label them for gluten-free use only. This includes the toaster, toaster oven, colander, sifter, utensils.
• Store gluten-free foods separately, clearly marked. Color-coding with stickers can work well.
• Prepare gluten-free meals first, to prevent contamination of surfaces and utensils.
• Use fresh cooking water or oil. Don’t reuse water that was used to cook an item containing gluten and don’t fry regular and gluten-free items in the same oil.
Dr. Grossman says that it’s important for parents and grandparents not to label a child as having Celiac Disease until they have a diagnosis. “They shouldn’t jump the gun,” he says. “Some kids have gluten sensitivity, rather than full blown Celiac Disease. The child should be seen by their primary care physician first, who will refer them to a gastroenterologist if needed.”
Dr. Grossman recently joined Indian River Medical Center as part of its gastroenterology practice, located at 3745 11th Circle, Suite 101 in Vero Beach; the office phone is 772-299-3511.
