Celiac Disease

What is Celiac Disease?

Celiac disease is a genetic, autoimmune digestive disease that damages the small intestine and interferes with the absorption of nutrients from food. About one in 100 children has celiac disease, making it one of the most common conditions in children.

People who have celiac disease are permanently intolerant to gluten, a protein found in all forms of wheat, rye, and barley. Although the common belief is that gluten is found only in foods, the protein is actually used in many everyday products including medications, vitamins, adhesives used for stamps and envelopes and cosmetic products such as lotion, shampoo and lipstick.

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What are the symptoms of Celiac Disease?

The symptoms of celiac disease vary greatly among patients and can affect almost any part of the body. One child may experience severe diarrhea and abdominal pain while another may have skin, liver, neurological, dental, or other problems. Many children with celiac disease will have problems with growth.

The most common typical and atypical celiac disease symptoms include:

Autoimmune

  • Type 1 Diabetes (juvenile onset)
  • Hypothyroidism (Hashimoto’s Disease)
  • Hyperthyroidism (Grave’s Disease)
  • Secondary Hyperparathyroidism
  • Sjogren’s Syndrome – dry eyes and mouth
  • Addison’s Disease – atrophy of adrenal glands
  • Autoimmune Liver Disease
  • Dilated (congestive) Cardiomyopathy – inflammation of heart muscle
  • Alopecia Areata – patchy hair loss
  • Rheumatoid Arthritis
  • Fibromyalgia
  • Collagen-Vascular Disease
  • Aphthous stomatitis – canker sores
  • Multiple Sclerosis
  • Systemic Lupus Erythematosis
  • Reynaud’s Syndrome – constriction of blood vessels of hands, feet, fingers and toes

Behavioral/Psychiatric

  • Depression – bulk of serotonin found in the intestine, not the brain
  • ADD/ADHD/Autism Spectrum Disorder (although no studies have shown a definitive link between celiac disease and ADD/ADHD/autism, many families feel their children have improved on a gluten-free diet)
  • Hypochondria
  • Inability to concentrate, “brain fog”
  • Anxiety
  • Neurosis
  • Moodiness
  • OCD – Obsessive-Compulsive Disorder

Cancers

  • Small Intestine Adenocarcinoma
  • Lymphoma
  • Non-Hodgkin’s Lymphoma
  • Melanoma
  • Childhood Malignancies
  • Thyroid
  • Esophageal Carcinoma

Dermatologic and Mucous Membranes

  • Dermatitis Herpetiformis
  • Eczema
  • Psoriasis
  • Vitiligo
  • Acne
  • Rosacea
  • Urticaria – hives
  • Vasculitis – inflammation of blood vessels

Gastrointestinal

  • Diarrhea
  • Lactose Intolerance
  • Abdominal Distention
  • Wasting
  • Change in appetite
  • Colitis – can have blood in the stool with CD
  • Constipation
  • Dyspepsia – “stomach aches”
  • Bacterial overgrowth
  • Malabsorption
  • Flatulence
  • Reflux/heartburn
  • Hepatitis – elevated liver functions
  • Pain and bloating
  • Ulcers – mouth, esophageal, stomach, upper small intestine
  • Vomiting
  • CD can be confused with Irritable Bowel Syndrome (IBS), Inflammatory Bowel Disease (IBD), ulcerative colitis and Crohn’s Disease

Hematologic

  • Leukopenia – low white blood cell count
  • Anemia – iron, folate, B12 deficiency
  • Bruising
  • Vitamin K deficiency
  • Bleeding
  • Thrombocytosis – elevated platelet count
  • Thrombocytopenia – low platelet count

Neurological

  • Peripheral Neuropathies, including Paresthesias – abnormality of sensation; numbness, burning, prickling, itching and/or tingling of hands and feet
  • Paraplegia – inability to use legs due to severe neuropathy
  • Ataxia – balance disturbance
  • Seizures
  • Migraines/headaches
  • Brain Atrophy and Dementia

Nutritional

  • Weight loss
  • Stunted growth
  • Poor weight gain, “failure to thrive”
  • Obesity
  • Low blood sugar

Renal

  • IgA Nephropathy

Reproductive

  • Premature menopause
  • Infertility
  • Abnormal menstrual cycles
  • Spontaneous miscarriage
  • Delayed puberty

Respiratory

  • Respiratory problems
  • Asthma

Skeletal

  • Osteoporosis/Osteopenia
  • Joint, Bone, Muscle Pain
  • Dental Enamel Defects – white or brown spots, ridges on teeth or malformed teeth resulting from typical CD while teeth are forming
  • Clubbing – tips of toes and fingers become wide and thick; nails are shiny and abnormally curved

Other Symptoms

  • Edema
  • Tetany – spasms of hands and feet; muscle cramps
  • Fatigue
  • Chronic Fatigue Syndrome
  • Swelling and inflammation
  • Night Blindness
  • Chronic infections
  • Little or no nail growth

A patient with celiac disease may experience fairly immediate problems such as abdominal pain, bloating or diarrhea after eating gluten-containing foods. However, if the patient continues to eat gluten-containing foods, long-term side effects, such as poor growth, can occur.

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How is Celiac Disease diagnosed?

Two types of testing are used to diagnose celiac disease.

The first is a blood test to measure whether there are antibodies (immunoglobulins) to injury, caused by gluten, are in the blood. A person with celiac disease has higher than normal levels of these antibodies in their blood. Antibodies are proteins produced by the immune system in response to substances that the body perceives to be foreign or threatening. For people with celiac disease, the gluten protein is the foreign substance that will cause production of antibodies.

To screen for celiac disease using a blood test, physicians will usually measure levels of:

  • Immunoglobulin A (IgA)
  • IgA anti-tissue transglutaminase antibodies (tTGA)
  • IgA anti-endomysial antibodies (AEA)

The screening blood antibody tests are very helpful, but false positive and false negative results can occur. If a person has a positive screening blood antibody test, an experienced healthcare provider will recommend performing a procedure called an endoscopy with a small intestinal biopsy. The endoscopy is the only absolute way to determine whether celiac disease is present. This test is done safely, even in very small infants and should always be performed by an experienced pediatric gastroenterologist.

Almost all infants and children will have the endoscopy and biopsies done under anesthesia, which will guarantee that they will neither feel nor remember the procedure. The endoscope is a thin, flexible tube with a built-in camera system that allows the doctor to see inside the body. The endoscope slides over the tongue, down the esophagus (food tube), and into the stomach and then the intestine. Using the endoscope, tiny pieces of the intestine are removed to check for damage.

Sometimes a genetic test is done for celiac disease. This test will determine the presence of two genes, HLA-DQ2 and DQ8, which are present in most people with celiac disease and absent in most people who do not have the disease. However, the genetic test cannot give a final answer about whether a person has celiac disease. A positive test is found in about 30% of the US population but only about 1% of the population will develop the disease. A negative test makes it very unlikely that a person has celiac disease but does not completely rule it out.

A person must be eating gluten to be tested for celiac disease. If a person stops eating foods with gluten before being tested, the body will stop producing the antibodies that are associated with the injury from gluten. The results of either the screening blood tests or endoscopy with biopsies may be falsely negative.

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Who should be tested?

Celiac disease is a hereditary condition, which means it is passed through families. If one family member has the disease, other family members, especially first-degree relatives, should always be tested. First-degree relatives are considered parents, brothers and sisters, or the children of people who have been diagnosed. If a person has celiac disease, approximately 5 - 15% of his/her first-degree relatives will also have the disease.

In families uncertain of their celiac tendencies, it is recommended to test those who have certain chronic conditions and difficult-to-diagnose symptoms.

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Treatment

The only treatment for celiac disease is a lifelong gluten-free diet, which means eliminating all forms of wheat, rye, and barley. For some patients with celiac disease, starting a gluten-free diet can result in improvement in symptoms in as little as two weeks. The children who are most likely to have the best results are those whose whole family joins in the diet.

At first, the gluten-free diet can be difficult because gluten is used as a “hidden” ingredient in many processed foods. Recent labeling laws have made it easier to read the labels of food items containing wheat. However, food items containing malt or barley and their derivatives are not covered under those laws so it is very important to carefully read food labels to avoid gluten.

Depending on the child’s age, peer pressure can lead to “cheating,” so it is important to work with a healthcare professional to ensure success. Supportive counseling can help to create proper motivation for parents and children.

Recently, our Celiac Disease Program hired a psychologist, Dr. Aaron Rakow, who will help children and their families adjust to the lifestyle changes associated with celiac disease. Our program believes the mind and the body must be treated together to insure the best outcome for our patients.

Supportive counseling can help to create proper motivation for parents and children. The children who are most likely to have the best results are those whose whole family joins in the diet.

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What foods should my child avoid?

Unlike most diseases, treatment for celiac disease is nutritional and requires the removal of gluten – a protein found in wheat, rye and barley – from the diet. The American Dietetic Association 2006 recommendations for a gluten-free diet are listed below. It is important to check with a healthcare provider before implementing changes to a child’s diet.

Foods to Avoid for children with celiac disease:

Abyssinian hard Barley grass Barley hordeum Barley malt
Bleached flour Bran Bread flour Brewer’s yeast
Brown flour Bulgur Bulgur wheat Cereal binding
Chilton Club wheat Common wheat Couscous
Dextrimaltose Disodium Durum wheat Edible starch
Einkorn Emmer Farina Graham Farro
Filler Food starch Fu (dried wheat gluten) Germ
Graham flour Granary flour Gravy cubes Groats (barley, wheat)
Ground spices Hard wheat Hydrolyzed wheat gluten Hydrolyzed wheat protein
Hydrolyzed wheat starch Hydroxypropyltrimonium
Kamut (pasta wheat)
Malt Malt extract
Malt syrup Malt flavoring Malt vinegar Mir
Miso Macha wheat Matzo semolina Mustard powder
Oriental wheat Pasta Pearl barley Persian wheat
Poulard wheat Polish wheat Rice malt Rye
Seitan Semolina Semolina triticum Shot wheat
Stock cubes Strong flour Small spelt Soba noodles
Spelt Sprouted wheat or barley Tabbouleh Teriyaki sauce
TVP Timopheevi wheat Triticale X tritiocosecale Triticum vulgare
Udon (wheat noodles) Vavilovi wheat Vegetable starch Wheat amino acids
Wheat bulgur Wheat germ Wheat protein Wheat grass
Whole-meal flour Wild einkorn    

Foods allowed for children with celiac disease:

Acacia Gum Acorn Quercus Adipic Acid Adzuki Bean
Acacia Gum Agar Alfalfa Algae
Algin Alginate Allicin Almond nut
Aluminum Amaranth Annatto Annatto color
Apple cider vinegar Arabic gum Arborio Rice Arrowroot
Artichokes Aspic Ascorbic acid Atragalus gummifer
Balsamic vinegar Bean Flours Benzoic acid Besan
Betaine BHA BHT Beta Carotene
Biotin Buckwheat Butter (check additives) Butylated-Hydroxyanisole
Butyl compounds Calcium carbonate Calcium caseinate Calcium chloride
Caprylic acid Carboxymethyl cellulose Carnauba wax Carob bean
Carob flour Carrageenan Casein Cellulose Cellulose gum
Cetyl alcohol Chorella Chymosin Citric acid
Coconut Flour Collagen Corn meal Corn flour
Cornstarch Corn syrup Corn syrup solids Corn sweetener
Cotton seed oil Cream of tartar Demineralized whey Desamidocollagen
Dextrose Dioctyl sodium Distilled vinegar Elastin
Ester gum Flax Folic acid/Folate Formaldehyde
Fructose Fumaric acid Gelatin Glutamate
Glutamine Glycerides Glycerol Gram flour
Guar gum Herbs Honey Hyacinth bean
Hydrolyzed soy protein Iodine Invert sugar Jasmine Rice
Kasha Keratin Lactic acid/Lactate Lactose
Lanolin Lecithin Lentils Lipase Locust bean gum
Maize Malic acid/Malate Maltitol Manioc
Masa Masa flour Methyl cellulose Millet
Milo Mineral oil Mineral salts MSG (made in USA)
Mung bean Musk Niacin Nuts (except wheat, rye, and barley)
Paraffin Pepsin Petrolatum Phenylalanine
Polenta Polyethylene Polysorbates Potassium citrate
Potassium iodide Potassium sorbates Potato flour Potato starch
Propylene glycol Propyl gallate Psyllium Pyridoxine
Quinoa Ragi Rape Reticulin
Rice flour Rice vinegar Rosin Royal jelly
Sago palm Sago flour Saifun (bean threads) Seaweed
Sesame seeds Sorghum Flour Sunflower seeds Sphingolipids
Soba (100% buckwheat) Sodium acid Sodium benzoate Sodium caseinate
Sodium lauryl sulfate Sodium nitrate Sodium phosphate Sorbic acid
Sorbitol-Mannitol Sorghum Soy Soy lecithin
Stearic acid Sucrose Sulfites Sulfur dioxide
Tallow Tapioca Tarrow root Teff flour
Teff Tofu Tragacanth Turmeric
Tyrosine Waxy maize Whey White vinegar
Vitamin A (palmitate) Xanthan gum Yam flour  
Children's Team

Children's Team

Providers

John Snyder

Division Chief, Gastroenterology, Hepatology, and Nutrition
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Certain illnesses and medications can affect the strength and density of a child’s bones. We created the Bone Health Program to help all young patients maintain strong bones and reduce the risk of broken bones (fractures) and other injuries.

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Our gastroenterology experts provide expert diagnosis and treatments for children with digestive, liver, and nutrition disorders.

Celiac Disease Program

Children’s National is helping to improve the way pediatric celiac disease is diagnosed and treated.

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