This site is intended to share the answers I found in my quest to understand celiac disease with family,  friends, and others who may be trying to find the answers I too have been seeking. This is a compilation of answers from various sources (clearly listed and linked prior to the quotes).

What is celiac disease?

(Source: Celiac.org: What Is Celiac Disease?)

“Celiac disease is a serious genetic autoimmune disorder where the ingestion of gluten leads to damage in the small intestine.  It is estimated to affect 1 in 100 people worldwide.  Two and one-half million Americans are undiagnosed and are at risk for long-term health complications.

“When people with celiac disease eat gluten (a protein found in wheat, rye and barley), their body mounts an immune response that attacks the small intestine. These attacks lead to damage on the villi, small fingerlike projections that line the small intestine, that promote nutrient absorption. When the villi get damaged, nutrients cannot be absorbed properly into the body. The only treatment currently for celiac disease is a strict, gluten-free diet. Most patients report symptom improvement within a few weeks, although intestinal healing may take several years.

“Celiac disease is hereditary, meaning that it runs in families. People with a first-degree relative with celiac disease (parent, child, sibling) have a 1 in 10 risk of developing celiac disease.”

Additional Links:

Sams, Aaron and Hawks, John, “Celiac Disease as a Model for the Evolution of Multifactorial Disease in Humans” (2014). Human Biology Open Access Pre-Prints. Paper 49.

Videos:

Alessio Fasano – “Spectrum of Gluten-Related Disorders: People Shall Not Live by Bread Alone”

Celiac disease – symptoms & pathophysiology – Good explanation (minor weakness: focused only on typical Celiac, suggesting only digestive symptoms)

What are the categories of celiac disease?

(Source: Beth Israel Deaconess Medical Center, Harvard Medical School Teaching Hospital: Introduction to Celiac Disease – Level 3)

Four main categories:

"It is characterized primarily by gastrointestinal features such as diarrhea, weight loss and associated abdominal pain or nutritional problems due to malabsorption. A biopsy of the small intestine will show villous atrophyand improvement of this atrophy will usually be seen on the gluten-free diet. Symptoms should also improve on a gluten-free diet."
"There are few or no gastrointestinal symptoms. Non-gastrointestinal features, such as Dermatitis Herpetiformis (a very itchy skin rash), iron deficiency anemia, or osteoporosis are more common in atypical celiac disease. Like classical celiac disease, the diagnosis of atypical celiac disease is made by blood testing for antibodies commonly found in celiac disease. Villous atrophy is seen in the small intestinal biopsy and symptoms improve on a gluten-free diet. The 'atypical' presentation of celiac disease is currently the most common presentation."
"Subclinical celiac disease is disease that is below the threshold of clinical detection without signs or symptoms sufficient to trigger celiac disease in routine clinical testing. 3 There are no related gastrointestinal or non-gastrointestinal symptoms or nutritional deficiencies seen but damage is still occurring to the small intestine. Villous atrophy can be seen. Individuals with subclinical celiac disease are usually found through screenings of high-risk individuals. Examples include a person with a family history of celiac disease or type 1 diabetes, or someone diagnosed on routine endoscopy that was performed for other reasons. The value of treating subclinical celiac disease with a gluten-free diet is uncertain."
"Blood tests are positive for celiac antibodies (either endomysial antibody or tissue transglutaminase antibody) but the small intestinal biopsy is normal with no evidence of villous atrophy. Individuals with potential celiac disease may develop active celiac disease later in life, either with symptoms or changes in their small intestinal biopsies. The value of treating potential celiac disease with a gluten-free diet is unproven. Most physicians recommend continuing on a normal diet but with increased awareness that active celiac disease may develop over time."
[The following image from the same article was helpful for me to visualize/understand that those with symptomatic celiac disease are a small number compared to the total number of people with celiac disease.]

Reference: Aybar, A, Fasano, A. A Global Disease: The Iceberg Dilemma. In Real Life with Celiac Disease: Troubleshooting and Thriving Gluten-Free. Eds. Dennis M, Leffler D. AGA Press. Bethesda, MD, 2010.

 

Another explanation: (Source: Celiac.org: Celiac Disease Symptoms)

Classical, Non-Classical and Silent Celiac Disease

“According to the World Gastroenterology Organization, celiac disease may be divided into two types: classical and non-classical.

“In classical celiac disease, patients have signs and symptoms of malabsorption, including diarrhea, steatorrhea (pale, foul-smelling, fatty stools), and weight loss or growth failure in children.

“In non-classical celiac disease, patients may have mild gastrointestinal symptoms without clear signs of malabsorption or may have seemingly unrelated symptoms. They may suffer from abdominal distension and pain, and/or other symptoms such as: iron-deficiency anemia, chronic fatigue, chronic migraine, peripheral neuropathy (tingling, numbness or pain in hands or feet), unexplained chronic hypertransaminasemia (elevated liver enzymes), reduced bone mass and bone fractures, and vitamin deficiency (folic acid and B12), late menarche/early menopause and unexplained infertility, dental enamel defects, depression and anxiety, dermatitis herpetiformis (itchy skin rash), etc.

“Silent celiac disease is also known as asymptomatic celiac disease. Patients do not complain of any symptoms, but still experience villous atrophy damage to their small intestine. Studies show that even though patients thought they had no symptoms, after going on a strict gluten-free diet they report better health and a reduction in acid relux, abdominal bloating and distention and flatulence. First-degree relatives (parents, siblings, children) , whether or not experiencing symptoms, should always be screened, since there is a 1 in 10 risk of developing celiac disease.

“The number of ways celiac disease can affect patients, combined with a lack of training in medical schools and primary care residency programs, contributes to the poor diagnosis rate in the United States. Currently it is estimated that 80% of the celiac disease population remains undiagnosed.”

How does celiac disease develop?

(Source: Beth Israel Deaconess Medical Center, Harvard Medical School Teaching Hospital: Introduction to Celiac Disease – Level 3)

“Three conditions are necessary for celiac disease to develop:

  1. The person must have the genes (HLA-DQ2, HLA-DQ8, or both).
  2. The person must have been exposed to gluten (such as when a baby is given wheat cereal as infant food).
  3. Environmental or physiological (having to do with the body) factors may also contribute to the onset of celiac disease.

“Environmental or physiological factors include surgery, pregnancy, childbirth, viral infections, or severe emotional stress. 4Researchers are investigating other factors that may influence the symptoms of celiac disease including cow’s milk formulas, breastfeeding, age at gluten introduction, quantity of gluten, and quality of cereals. 5,6 Researchers are trying to investigate this fascinating area of the disease.”

 

20 Things You Might Not Know About Celiac Disease