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Condition/Treatment

Celiac Disease


Celiac Disease

What is Celiac Disease?
What are the symptoms of Celiac Disease?
How is Celiac Disease diagnosed?
Who should be tested?
Treatment: The gluten-free diet
What foods should my child avoid?


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
    Hydroxyporpyltrimonium 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
    Aspartame
    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
    Carboxymethylcellulose
    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
    Seasame 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
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Celiac Disease - Departments & Programs - Children's National Medical Center