Pediatric 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 testthose who have certain chronic conditions and difficult-to-diagnosesymptoms.

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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 madeit easier to read the labels of food items containing wheat. However, fooditems 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. Supportivecounseling 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 changesassociated with celiac disease. Our program believes the mind and the bodymust 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 hardBarley grassBarley hordeumBarley malt
Bleached flourBranBread flourBrewer’s yeast
Brown flourBulgurBulgur wheatCereal binding
ChiltonClub wheatCommon wheatCouscous
DextrimaltoseDisodiumDurum wheatEdible starch
EinkornEmmerFarina GrahamFarro
FillerFood starchFu (dried wheat gluten)Germ
Graham flourGranary flourGravy cubesGroats (barley, wheat)
Ground spicesHard wheatHydrolyzed wheat glutenHydrolyzed wheat protein
Hydrolyzed wheat starchHydroxypropyltrimonium
Kamut (pasta wheat)
MaltMalt extract
Malt syrupMalt flavoringMalt vinegarMir
MisoMacha wheatMatzo semolinaMustard powder
Oriental wheatPastaPearl barleyPersian wheat
Poulard wheatPolish wheatRice maltRye
SeitanSemolinaSemolina triticumShot wheat
Stock cubesStrong flourSmall speltSoba noodles
SpeltSprouted wheat or barleyTabboulehTeriyaki sauce
TVPTimopheevi wheatTriticale X tritiocosecaleTriticum vulgare
Udon (wheat noodles)Vavilovi wheatVegetable starchWheat amino acids
Wheat bulgurWheat germWheat proteinWheat grass
Whole-meal flourWild einkorn  

Foods allowed for children with celiac disease:

Acacia GumAcorn QuercusAdipic AcidAdzuki Bean
Acacia GumAgarAlfalfaAlgae
AlginAlginateAllicinAlmond nut
AluminumAmaranthAnnattoAnnatto color
Apple cider vinegarArabic gumArborio RiceArrowroot
ArtichokesAspicAscorbic acidAtragalus gummifer
Balsamic vinegarBean FloursBenzoic acidBesan
BetaineBHABHTBeta Carotene
BiotinBuckwheatButter (check additives)Butylated-Hydroxyanisole
Butyl compoundsCalcium carbonateCalcium caseinateCalcium chloride
Caprylic acidCarboxymethyl celluloseCarnauba waxCarob bean
Carob flourCarrageenan CaseinCelluloseCellulose gum
Cetyl alcoholChorellaChymosinCitric acid
Coconut FlourCollagenCorn mealCorn flour
CornstarchCorn syrupCorn syrup solidsCorn sweetener
Cotton seed oilCream of tartarDemineralized wheyDesamidocollagen
DextroseDioctyl sodiumDistilled vinegarElastin
Ester gumFlaxFolic acid/FolateFormaldehyde
FructoseFumaric acidGelatinGlutamate
GlutamineGlyceridesGlycerolGram flour
Guar gumHerbsHoneyHyacinth bean
Hydrolyzed soy proteinIodineInvert sugarJasmine Rice
KashaKeratinLactic acid/LactateLactose
LanolinLecithinLentils LipaseLocust bean gum
MaizeMalic acid/MalateMaltitolManioc
MasaMasa flourMethyl celluloseMillet
MiloMineral oilMineral saltsMSG (made in USA)
Mung beanMuskNiacinNuts (except wheat, rye, and barley)
ParaffinPepsinPetrolatumPhenylalanine
PolentaPolyethylenePolysorbatesPotassium citrate
Potassium iodidePotassium sorbatesPotato flourPotato starch
Propylene glycolPropyl gallatePsylliumPyridoxine
QuinoaRagiRapeReticulin
Rice flourRice vinegarRosinRoyal jelly
Sago palmSago flourSaifun (bean threads)Seaweed
Sesame seedsSorghum FlourSunflower seedsSphingolipids
Soba (100% buckwheat)Sodium acidSodium benzoateSodium caseinate
Sodium lauryl sulfateSodium nitrateSodium phosphateSorbic acid
Sorbitol-MannitolSorghumSoySoy lecithin
Stearic acidSucroseSulfitesSulfur dioxide
TallowTapiocaTarrow rootTeff flour
TeffTofuTragacanthTurmeric
TyrosineWaxy maizeWheyWhite vinegar
Vitamin A (palmitate)Xanthan gumYam flour 
Children's Team

Children's Team

Providers

John Snyder

Division Chief, Gastroenterology, Hepatology, and Nutrition
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Bone Health Program

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

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