Caring For Your Child With Celiac Disease
Celiac disease is a life-long, autoimmune disease, predominantly affecting the small intestine, though also affecting parts of the body outside the gastrointestinal (GI) tract. Celiac disease is triggered by ingestion of gluten, in people who have an underlying genetic susceptibility. Gluten is the major protein in wheat, though grains like barley and rye also contain gluten. Celiac disease affects people all over the world, with a prevalence of approximately 1 in 100 persons.
Celiac disease is associated with the genes HLA-DQ2 and HLA-DQ8: 95% of celiac cases are DQ2 positive. 40% of the population have one the these two genes, and therefore the genetic predisposition for celiac, though never develop disease. It is recognized that a combination of genetic and environmental factors, which include dietary gluten, viral infection, stress, toxins, etc., ultimately trigger the cascade of gut inflammation that characterizes celiac disease.
When a person with celiac disease ingests gluten, the gut immune system is activated, and ultimately destroys the intestinal villi, the small, finger-like projections in the small intestine where nutrients are absorbed from food. This causes poor weight gain, nutritional deficiencies, GI symptoms, failure to thrive, and propels systemic signs and symptoms. Elimination of gluten reverses the intestinal damage in celiac disease, and relieves gastrointestinal and systemic signs and symptoms of celiac disease.
Signs and symptoms of celiac disease include:
-diarrhea and constipation
-bloating and gas
-failure to thrive (failure to gain weight, short stature)
-abdominal pain
-nausea and vomiting
-bumpy rash around the elbows and knees (dermatitis herpetiformis)
-mouth ulcers and poor dental enamel
-anemia
-absence or loss of menstrual periods (amenorrhea), or infertility
-alopecia (hair loss)
-chronic fatigue
-thin bones (osteopenia, osteoporosis)
-brain fog and headaches
-depression and behavioral problems
The evaluation for celiac disease includes blood testing that may show elevated antibody levels to gliadin in gluten, endomysium in the gut, and tissue transglutaminase (IgA-tTg). In children younger than 2yr, additional testing against IgG-deaminated gliadin peptide is also useful. Though these are the hallmarks of celiac disease in the blood, confirmatory diagnosis is made by undergoing an upper GI endoscopy with small bowel biopsies, which reveal varying degrees of intestinal inflammation and blunting/atrophy of the intestinal villi. It is critical that gluten not be removed from the diet until the endoscopy has been completed. Other recommended lab tests at the time of diagnosis include a complete blood count (CBC), iron studies, vitamin D, thyroid and liver function testing. Interestingly, people with HLA-DQ2 may not respond to hepatitis B vaccination in infancy, so checking their antibody status during childhood is recommended, and revaccination initiated if indicated.
The only current treatment for CD is complete avoidance of gluten, meaning restricting all foods containing wheat, barley and rye from the diet. When reading food labels, this also means restricting other grains that contain gluten: bran, couscous, farina, matzo flour, panko, semolina, and udon. A gluten-free diet (GF) includes all foods that are naturally free of grain, including all fruits, vegetables, meats, eggs, fish, dairy, beans and legumes, nuts and soy protein. Gluten-free grains that are safe for people with celiac disease to consume include amaranth, buckwheat, corn, potato, gluten-free oats, quinoa, rice and teff. Beware of hidden gluten in food additives: hydrolyzed vegetable protein, modified food starch, natural flavoring and maltodextrin may come from wheat or barley. Traditional soy sauce is processed with wheat and therefore not acceptable for people with celiac disease: gluten-free soy sauce, tamari, and coconut aminos are all gluten-free alternatives. Products labeled gluten-free must adhere to strict FDA labeling rules, containing less than 20 parts per million gluten. Cross-contamination with gluten-containing foods in the home, at school, in restaurants and at social settings is risky to people with celiac disease, as even crumbs containing gluten can lead to symptoms and intestinal inflammation: utmost care must be taken to inform others and protect your child. Good handwashing with soap and water prior to eating is essential. Non-food items containing gluten, if ingested, can trigger symptoms in people with celiac disease. Therefore, particularly for young children who are prone to put things in their mouth, it is important to check for gluten exposure in medications, supplements, shampoo, cosmetics, communion wafers, and school supplies like papier-mâché and pasta used for artwork etc. A 504 plan for school can proactively plan for dietary and classroom accommodations for your child with celiac disease.
Celiac disease occurs more frequently in people with certain conditions, such as Type 1 diabetes mellitus, Down Syndrome, Williams Syndrome, Turner Syndrome, and Hashimoto (autoimmune thyroiditis). Routine screening for celiac disease is recommended for those patients, along with first-degree relatives (parents, children, siblings) of a person with celiac disease.
Non-celiac gluten sensitivity (NCGS) or gluten intolerance, is a condition where the body reacts to the inflammatory effects of gluten, though not through autoimmune mechanisms. People with NCGS may have headaches, brain fog, ADD, anxiety, irritable bowel syndrome, eczema/atopic dermatitis, etc. An elimination diet can identify if a person has gluten sensitivity.
We are here for you. Reach out on the portal or schedule an appointment to come see us in the office if you have any concerns about your child and celiac disease. Here are some local and national resources to support our patients with celiac disease and their families:
Celiac Disease Foundation www.celiac.org 818-716-1513
Beyond Celiac: Together for a Cure www.beyondceliac.org 844-856-6692
National Celiac Association www.nationalceliac.org. 888-4-CELIAC
National Foundation for Celiac Awareness www.allergyhome.org
Dr. Carla Perez NCH Gastroenterologist 888-624-2778
Dr. Jacqueline Larson JoeD Gastroenterologist 954-265-4475
Lucille Beseler, Nutritionist, RDN/LDN 954-360-7883
Meryl Brandwein, Nutritionist, RDN/LDN 954-828-2602
Gluten Intolerance Group www.gluten.net 253-833-6655
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