For many, demystifying celiac disease is a necessity. Even though research and understanding of this serious genetic autoimmune disease has grown in abundance, there is so much more to know about this disease, which affects nearly 3 million Americans. When those living with celiac consume gluten, the body identifies the gluten protein as a “foreign invader” waging war on their insides. In turn, even healthy tissue can be damaged in its path. Currently the only treatment for celiac disease is following a strict gluten-free diet.

Some children fall ill early in life while others may not receive diagnosis until after years of exposure; the cause for this is unknown. Celiac disease was once thought of as a childhood illness that could be outgrown overtime; however, now we know that unfortunately it is a lifelong condition. It is fortunate that with the treatment being a gluten-free diet, both children and adolescents typically respond very well. Most children feel significantly better after their initial two weeks on the diet and succeed in achieving a normal height, weight, and bone health, which may have caused problems prior to their diagnosis.

No one is sure why and when celiac disease will manifest itself, but it appears to hold hereditary properties. You have a 5% to 10% chance of getting this autoimmune disease if someone in your family has been diagnosed already. About 1 in every 133 people in the United States has celiac disease. However, many people are living with celiac disease and do not even know it or are still seeking a proper diagnosis. Startlingly enough, if all these people were diagnosed with celiac disease, it would be more common than type 1 diabetes. Fortunately, awareness is increasing surrounding the symptoms and diagnosis leading to better ways of testing people for it.

Symptoms of celiac disease are quite personal and accounts vary from person to person. Also, the disease’s indicators can arise at any age. Identifying celiac disease in children can be difficult being that irritability is one of the markers. Additionally, only 20-30% of kids with celiac disease will have or complain of stomach symptoms. There is wide variation in the severity of symptoms, many children will face signs within minutes to hours after consuming gluten and those symptoms may only last a few hours. In others, symptoms can remain much longer—perhaps several days or up to two weeks.

Other symptoms can include: Anemia, bloating and gas, irritability, chronic diarrhea or constipation, damaged or discolored tooth enamel, fatigue, itchy skin rash, poor weight gain or weight loss, vomiting. Older children and teenagers may have (in addition to the signs listed above) some of the following signs: Delayed puberty, achy pain in the bones or joints, chronic fatigue, recurrent headaches or migraines, recurring mouth sores. Adolescents with celiac disease may also have mood disorders, including anxiety and depression, as well as panic attacks.

It is very important to monitor any of these symptoms and encourage that your child be tested at the onset of the aforementioned signs or if celiac disease runs in your family. First-degree relatives (parent, sibling, child) have a 1 in 10 chance of developing celiac disease themselves.

A simple blood test is the first step to diagnosis. If you think your child could have celiac disease, it is extremely important that you keep them on a normal, gluten-containing diet throughout the testing process. It is important to note that it is likely the celiac disease tests could be inaccurate if the child is on a gluten-free diet.

If the screening tests show a person might have celiac disease, the next step will lead you to see a gastroenterologist. This specialist may decide to take a sample, called a biopsy, of the small intestine for further examination.

If your child tests negative for celiac disease, but continues to experience discomfort when digesting gluten, ask your child’s pediatrician about non-celiac gluten sensitivity. Gluten sensitivity causes symptoms that may mirror celiac disease but does not result in intestinal damage. To diagnose gluten sensitivity, doctors must first eliminate celiac disease and wheat allergy as possibilities. The next helpful tool will be to embark upon an elimination diet to determine which foods (if any) are causing said symptoms.

Celiac disease is treated by not eating gluten. When first diagnosed it can feel difficult and overwhelming as gluten is in so many foods, but a dietitian can be a great resource during the transition. It is important not to start a gluten-free diet unless you are actually diagnosed with celiac disease.

Following a gluten-free diet allows the small intestine the time needed to heal. However, this doesn’t equate to the person being able to start consuming gluten again. For someone with celiac disease, gluten will always irritate their intestines and all of their digestive (and any other) problems will return.

Always be aware of foods that contain gluten. However, it is very important to be mindful of “cross-contamination”. This occurs when food that does not contain gluten as an ingredient comes into contact with gluten-containing foods during preparation. This can happen at a restaurant or even at home in your own kitchen, for example, wheat bread crumbs in the toaster oven or perhaps the stick of butter or jar of peanut butter after having a contaminated utensil dipped inside. If you have celiac disease, you will need your own dedicated kitchen utensils and equipment as well as a safe cabinet for storing your goods and wares. Some foods are contaminated at manufacturing facilities during processing. Therefore, as a parent make sure you are finding certified gluten-free foods.