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Public Meeting on Gluten-Free Food Labeling - Text Version of PowerPoint Presentation by Frank A. Hamilton

Public Meeting: Gluten-Free Labeling main page

Slide 1 - Celiac Disease-A not so Uncommon Disorder

Frank A. Hamilton, M.D., MPH
National Institutes of Health
National Institute of Diabetes, Digestive and Kidney Diseases
August 19, 2005

Slide 2 - Definition

Celiac disease is an immune-mediated enteropathy caused by a permanent sensitivity to gluten in genetically susceptible individuals.

It occurs in symptomatic subjects with gastrointestinal and non-gastrointestinal symptoms, and in some asymptomatic individuals, including subjects affected by:

  • Type 1 diabetes
  • Williams syndrome
  • Down syndrome
  • Selective IgA deficiency
  • Turner syndrome
  • First degree relatives of individuals with celiac disease

Slide 3 - Clinical Manifestations

  • Gastrointestinal (“classical”)
  • Non-gastrointestinal ( “atypical”)
  • Asymptomatic

Slide 4 - The Celiac Iceberg

Image of The Celiac Iceberg. A grey triangle with mountain peaks at the top. The bottom of the triangle is labeled "Latent Celiac Disease."  Brackets on the side of the triangle enclose this region and label it as "Normal Mucosa." Above that across the middle of the triangle is horizontal line. Above the line, the area is titled "Silent Celiac Disease." A bracket on the side of the triangle that runs from this horizontal line to the top of the triangle names the region "Manifest mucosal lesion." Then there is a dotted-line running across the top of the triangle near the peaks. A arrow pointing to the top of the triangle indicates the top regain as "Symptomatic Celiac Disease. Along the bottom of the triangle is a bracket running the length of the triangle base labeling the region "Genetic susceptibility: - DQ2, DQ8 Positive serology."

Slide 5 - Gastrointestinal Manifestations (“Classic”)

Most common age of presentation: 6-24 months

  • Chronic or recurrent diarrhea
  • Abdominal distension
  • Anorexia
  • Failure to thrive or weight loss

Rarely: Celiac crisis

Slide 6 - Typical Celiac Disease

Two photos lined up side by side. The first photo on the left is of a naked baby with his eyes hidden by a bar. The baby has abdominal distention. The picture on the right is a back view of a naked child. There are folds around the buttocks primarily due to weight loss. 

Slide 7 - Non Gastrointestinal Manifestations

  • Dermatitis Herpetiformis
  • Dental enamel hypoplasia of permanent teeth
  • Osteopenia/Osteoporosis
  • Short Stature
  • Delayed Puberty

Slide 8 - Dermatitis herpetiformis

Two photos of Dermatitis Herpetiformis sores. One image is of an elbow the other a close up of skin. 

Slide 9 - 3 – Asymptomatic

  • Silent:
    No or minimal symptoms, “damaged” mucosa and positive serology

Identified by screening asymptomatic individuals from groups at risk such:

  • First degree relatives
  • Down syndrome patients
  • Type 1 diabetes patients, etc.

Slide 10 - 3 – Asymptomatic

  • Latent: No symptoms, normal mucosa
    • May show positive serology. Identified by following in time asymptomatic individuals previously identified at screening from groups at risk. These individuals, given the “right” circumstances, will develop at some point in time mucosal changes (± symptoms)

Slide 11 - Associated Conditions

Graph displaying associated conditions data. Transcript of presentation provides speaker explanation. 

Slide 12 - Relatives

  • Healthy population: 1:133
  • 1st degree relatives: 1:18 to 1:22
  • 2nd degree relatives: 1:24 to 1:39

Slide 13 - Major Complications of Celiac Disease

  • Short stature
  • Dermatitis herpetiformis
  • Dental enamel hypoplasia
  • Recurrent stomatitis
  • Fertility problems
  • Osteoporosis
  • Gluten ataxia and other neurological disturbances
  • Refractory celiac disease and related disorders
  • Intestinal lymphoma

Slide 14 - Epidemiology

The “old” Celiac Disease Epidemiology:

  • A rare disorder typical of infancy
  • Wide incidence fluctuates in space (1/400 Ireland to 1/10000 Denmark) and in time
  • A disease of essentially European origin

Slide 15 - “Mines” of Celiac Disease Were Found Among:

photo - diagram explaining where "mines" of Celiac disease were found

Slide 16 - Celiac Disease Epidemiological Study in USA

photo - diagram displaying epidemiological data

Projected number of celiacs in the U.S.A.: 2,115,954
Actual number of known celiacs in the U.S.A.: 40,000
For each known celiac there are 53 undiagnosed patients.

A. Fasano et al., Arch Int Med 2003;163:286-292.

Slide 17 - Celiac Disease Prevalence Data

Geographic Area Prevalence on clinical diagnosis* Prevalence on screening data
Brazil ? 1:400
Denmark 1:10,000 1:500
Finland 1:1,000 1:130
Germany 1:2,300 1:500
Italy 1:1,000 1:184
Netherlands 1:4,500 1:198
Norway 1:675 1:250
Sahara ? 1:70
Slovenia ? 1:550
Sweden 1:330 1:190
United Kingdom 1:300 1:112
USA 1:10,000 1:133
Worldwide (average) 1:3,345 1:266

*based on classical, clinical presentation

Fasano & Catassi, Gastroenterology 2001; 120:636-651.

Slide 18 - Celiac Disease Icebergs

photo - bar graph displaying data for Celiac disease icebergs in Ireland, Italy, Netherlands, Sweden and USA

Slide 19 - The Global Village of Celiac Disease

  • In many areas of the world Celiac Disease is one of the commonest, lifelong disorders affecting around 1% of the general population.
  • Most cases escape diagnosis and are exposed to the risk of complications.
  • Active Celiac Disease case-finding is needed but mass screening should be considered.
  • The impact of Celiac Disease in the developing world needs further evaluation.

Slide 20 - Diagnosis

Diagnostic principles

  • Confirm diagnosis before treating

    • Diagnosis of Celiac Disease mandates a strict gluten-free diet for life
      • following the diet is not easy
      • QOL implications
  • Failure to treat has potential long term adverse health consequences

    • increased morbidity and mortality

Slide 21 - Serological Tests

Role of serological tests:

  • Identify symptomatic individuals who need a biopsy
  • Screening of asymptomatic “at risk” individuals
  • Supportive evidence for the diagnosis
  • Monitoring dietary compliance

Slide 22 - Serological Tests (cont.)

  • Antigliadin antibodies (AGA)*
  • *Antiendomysial antibodies (EMA)
  • *Anti tissue transglutaminase antibodies (TTG)

    • first generation (guinea pig protein)
    • second generation (human recombinant)
  • HLA typing
  • *2004 Consensus Conf. Best tests

Slide 23 - Treatment

  • Only treatment for celiac disease is a gluten-free diet (GFD)

    • Strict, lifelong diet
    • Avoid:
      • Wheat
      • Rye
      • Barley

Slide 24 - Oats –are they Safe?

  • Studies from 1970’s suggested that oats were toxic in CD
  • Oats contain a protein-avenin
  • Avenin- similar to wheat gliadin
  • Both are prolamins –rich in glutamine and proline, both amino acids

Slide 25 - OATS

  • Avenin- proportion of proline and glutmaine is very low in oats compared to gliadin in wheat
  • 2004, Random. Clin Trial in children fed GFD vs. GFD with oats Hogberg Gut May 1, 2004 53(5)649-654.

Slide 26 - Findings

  • First large study to indicate that oats in GFD do not prevent normalization of the small bowel tissue or celiac markers.
  • Other evidence supporting the safety of oats; G. Kilmartin Gut, January 1, 2003
  • In CD, oats are not toxic and immunogenic, Srinivasan BMJ 1996:1300-01

Slide 27 - Sources of Gluten


    • Bread
    • Bagels
    • Cakes
    • Cereal
    • Cookies
    • Pasta / noodles
    • Pastries / pies
    • Rolls

Slide 28 - Treatment – 6 Elements in RX

  • Consultation with a skilled dietitian Education about the disease
  • Lifelong adherence to a gluten-free diet
  • Identification and treatment of nutritional deficiencies
  • Access to an advocacy group
  • Continuous long-term follow-up by a multidisciplinary team

Slide 29 - Barriers to Compliance

  • Ability to manage emotions – depression, anxiety
  • Ability to resist temptation – exercising restraint
  • Feelings of deprivation
  • Fear generated by inaccurate information

Slide 30 - Factors that Improve Adherence

Internal Adherence Factors Include:

  • Knowledge about the gluten-free diet
  • Understanding the risk factors and serious complications can occur to the patient
  • Ability to break down big changes into smaller steps
  • Ability to simplify or make behavior routine
  • Ability to reinforce positive changes internally
  • Positive coping skills
  • Ability to recognize and manage mental health issues
  • Trust in physicians and dietitians

Slide 31 - Histological Features

photo - tissue sections

Horvath K. Recent Advances in Pediatrics, 2002.

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