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Definition

Celiac disease (CD) is also referred to as a gluten sensitive enteropathy (GSE), gluten intolerance, or celiac sprue. It is considered to be the most under-diagnosed common disease today, potentially affecting 1 in every 133 people in the USA. It is a chronic, inherited disease, and if untreated can ultimately lead to malnutrition. Gluten intolerance is the result of an immune-mediated response to the ingestion of gluten (from wheat, rye, and barley) that damages the small intestine. To learn more about the recently published multi-center prevalence study of celiac disease visit, www.celiaccenter.org.

Cause

CD is a 3-pronged fork:
1. you must inherit the gene,
2. consume gluten, and
3. have the gene triggered. Common triggers may include stress, trauma (surgeries, pregnancy, etc.), and viral infections.

Facts

  • Celiac disease was once thought of a rare childhood disease with only gastrointestinal (GI) symptoms. It is actually common, can occur at any age, and often presents as extra-intestinal. 
  • It was once mistakenly believed that one would "grow out" of the condition. In actuality, the disease is permanent and damage to the small intestine will occur every time you consume gluten, regardless if symptoms are present.
  • Approximately 1 in 20 first-degree relatives of diagnosed celiacs could have CD triggered in their lifetime.

Symptoms

Most physicians recognize the classic symptoms of celiac disease : diarrhea, bloating, weight loss, anemia, chronic fatigue, weakness, bone pain, and muscle cramps. Physicians may not be aware that celiac disease frequently presents with other symptoms, some that do not involve the small intestine. Signs that you could have celiac disease include: 

  • a first degree relative (parent, child, sibling) with celiac disease.
  • a second degree relative (aunt, uncle, cousin) with celiac disease.

    INTESTINAL SIGNS

  • lactose intolerance
  • excessive gas
  • indigestion (dyspepsia)
  • reflux (GERD)
  • diarrhea
  • constipation
  • stearorrhea (oily or greasy stools)
  • pale, foul-smelling, bulky stools
  • abdominal pain
  • abdominal distention/bloating
  • irritable bowel syndrome (IBS)

    EXTRA-INTESTINAL SIGNS

  • an inability to concentrate/fuzzy-minded
  • bleed easily including nose bleeds
  • persistent itchy rash
  • mouth sores or cracks in the corners of the mouth
  • dry mouth or dry eyes
  • muscle cramping
  • night blindness
  • tooth enamel defects (discoloration, tooth enamel loss)
  • lack the desire to eat
  • vitamin deficiencies
  • iron deficiency anemia, unexplained
  • a decreased ability for blood to clot
  • generalized weakness
  • weight loss
  • bone pain/joint pain
  • easily fractured bones (osteoporosis, osteopenia)
  • abnormal or impaired skin sensation (parasthesia)
  • burning, prickling, itching or tingling skin 
  • unexplained edema
  • short stature/growth retardation
  • amenorrhea (missed menstrual periods)
  • unable to conceive/impregnate
  • multiple unexplained miscarriages
  • multiple chemical sensitivity
  • chronic fatigue syndrome
  • fibromyalgia
  • depression
  • anxiety 

No Symptoms - some people have mild celiac disease without noticeable symptoms. 

Non-specific symptoms - some people get mild but unclear symptoms.

Diagnosis

Blood tests

  • Anti-tissue transglutaminase (tTG-IgA). This screening test is commonly used when an individual is in a risk group for celiac disease, whether or not he/she has symptoms. This test is usually the one offered for celiac screening events, as it is the most sensitive test available.
  • Total Serum IgA to test for IgA deficiency (this health condition can affect accuracy of antibody test)
  • Anti-endomysial antibody test (EMA-IgA). EMA-IgA are very specific for celiac disease but they are not as sensitive as the tTG-IgA. Some people with Type 1 Diabetes, Hashimoto’s thyroiditis and autoimmune liver conditions can have a falsely positive tissue transglutaminase test. For this reason, it is important that tTG test results in people with these conditions be checked with the EMA test. 

For more information contact the
University of Chicago Celiac
Disease Center at 773-702-7593
or www.CeliacDisease.net

Genetic test: HLA-DQ2 and HLA-DQ8 gene tests for celiac disease. The “gene tests” are not antibodies. They can be used to exclude celiac disease (if negative) in doubtful cases.

Small intestinal biopsy: A gastroenterologist takes small intestine tissue biopsies if the results of the antibody test(s) are positive or he/she has a strong suspicion of CD. A biopsy showing damaged villi in the small intestine is the first half of the 'Gold Standard' to diagnosing CD. The second half of the 'Gold Standard' is improvement of health with the gluten-free diet.

IMAGES of damage to the small intestine caused by celiac disease.

 

Treatment
Strict adherence to a gluten-free diet for life is the only treatment currently available. This involves the elimination of wheat, rye, barley, and derivatives of these grains from your diet. Medication is not normally required, unless there is an accompanying condition, e.g. osteoporosis, dermatitis herpetiformis, etc. Thriving, showing improvement and return of health on the gluten-free diet is the second half of the 'gold standard' of being diagnosed with CD.

Prognosis

Excellent, if you stay on the gluten-free diet. The small intestine will steadily heal and start absorbing the needed nutrients. You should start feeling better almost immediately; however, complete recovery may take several months to years.


Questions to ask your doctor

  • Should I take nutritional supplements?
  • Could I have associated food intolerances?
  • Where can I have a bone density study?
  • What other concerns should I have?
  • How can I find out about the diet?

Related Disorders

People with CD are at greater risk to develop other autoimmune disorders including:

  • Addison' s disease
  • autoimmune chronic active hepatitis
  • primary biliary cirrhosis
  • alopecia areata
  • Graves' disease
  • insulin-dependent diabetes mellitus (type 1)
  • myasthenia gravis
  • scleroderma
  • Sjogren's syndrome
  • lupus
  • thyroid disease

Thyroid disease and diabetes are the two most commonly associated diseases found with celiac disease. Dermatitis herpetiformis (DH) is a skin manifestation of celiac disease. Some persons with DH also have a higher incidence of other skin conditions, such as eczema.

Other conditions frequently seen in persons with gluten intolerance include:

  • anemia
  • Down syndrome
  • fertility problems

While other connections have been strongly suggested, such as with autism and multiple sclerosis (MS), the scientific body of evidence is lacking. As interest in these proposed connections continues to blossom, however, so will our scientific viewpoint.  

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Disclaimer: Information on this page or website should NOT be taken as medical advice. Before starting any food exclusion diet you must consult your Primary Care Physician and a Registered Dietician.