Celiac Disease in the United States
- Approximately 1:133 (or three million) people in the US have Celiac disease; unfortunately 97% are NOT yet diagnosed.
- Celiac disease is the leading under-diagnosed genetic disease in the nation.
- The risk of having Celiac disease is more than 10-times higher for relatives of a person with CD.
- It takes, on average, 11 years from the time people first report symptoms until they are diagnosed.
- There are over 200 recognized symptoms. Symptoms vary from person to person, which is why it is so hard to diagnose. A person may have one, two, or multiple symptoms. Some have no symptoms at all but internal damage still occurs.
- In 30% of people diagnosed with Celiac disease, other autoimmune diseases tend to be present. Those living with Hashimoto’s Thyroditis, Lupus, Rheumatoid Arthritis, Type 1 Diabetes, Sjogren’s Disease or Hepatitis should be screened for CD. Up to 10% of those with either Down, Williams or Turner Syndrome will also have Celiac disease.
- While many children are underweight at the time of diagnosis, adults can be underweight, normal or obese.
- Blood tests are available to assist with diagnosis, but negative test results can be inaccurate, especially early in the disease process.
- Although the average age of diagnosis is 40, people can be diagnosed at any age – from toddlers to adults in their 90’s.
What is Celiac Disease?
Celiac disease (CD) is a genetic disorder. In people with CD, eating a certain type of protein called gluten sets off an autoimmune response that causes damage to the small intestine. This, in turn, causes the small intestine to lose its ability to absorb the nutrients found in food, leading to malnutrition and a variety of other complications.
Gluten is found in wheat, barley, rye, and oats (abbreviated: WBRO). Related proteins are also found in triticale, spelt, kamut, and cous-cous.
What are the symptoms of Celiac Disease?
Celiac disease symptoms vary so widely among patients that there is no such thing as a "typical celiac." The amount of intestinal damage that has occurred and the length of time of abnormal nutrient absorption seem to be the factors that determine the type and severity of symptoms experienced.
How is Celiac Disease diagnosed?
There are two major steps leading to diagnosis of celiac disease:
- A Blood Test- the most sensitive and commonly used test to diagnose Celiac Disease is the Tissue Transglutaminase Antibodies (tTG-IgA) test. This test will be positive in about 98% of patients with celiac disease who are on a gluten- containing diet, whether symptoms are present or not.
- An endoscopic biopsy of the small intestine to assess gut damage.
How is Celiac Disease treated?
The only known treatment for celiac disease to date is a gluten-free diet.
What is the history of gluten-related disorders?
Celiac disease (CD) was first described in the second century, but the cause wasn't identified until the 20th century. Terminology has changed as research confirmed that celiac disease diagnosed in children was the same disease as non-tropical sprue diagnosed in adults. The term "celiac disease" is now most commonly used.
What is Dermatitis Herpetiformis?
Dermatitis Herpetiformis (DH) is an important associated disorder or complication of celiac disease which is manifested in the form of a skin rash. There is strong evidence that the changes in the intestinal mucosa and the immunologic findings in the majority of patients diagnosed with DH are identical with those found in celiac disease. Gluten has been found to have a close relationship with this skin rash. DH is often referred to as "celiac disease of the skin" while CD is referred to as "celiac disease of the gut."
What are the Symptoms of Dermatitis Herpetiformis?
Typically, DH can be characterized as an intensely itchy skin eruption distinguished by the formation of small papules or vesicles. The patient may perceive having red bumps and blisters. The symptoms of intense burning, stinging and itching cannot be overemphasized. It is common for DH lesions to be symmetrically distributed on the extensor surfaces of the body: over the elbows, knees, buttocks, scalp, posterior, neck, sacral (lower end of the spinal column) and shoulder areas.
How is Dermatitis Herpetiformis Diagnosed?
The technique of using fluorescent staining of the skin reveals the accumulation of granular immunoglobin deposits in the dermal papillary tips. In dermatitis herpetiformis (DH) patients these deposits are found to be of the immunoglobulin class IgA. This diagnostic test greatly enhances the accuracy of the diagnosis of DH. It has been found that these deposits of IgA are present in normal skin as well as in skin near the lesions of DH. Conversely, these findings have not been detected in patients who do not have DH.
How is Dermatitis Herpetiformis Treated?
As with celiac disease, the best and only known, side-affect free, treatment for dermatitis herpetiformis (DH) is a life-long adherence to the gluten-free diet.
Are there dental effects of Celiac Disease?
The state of one’s teeth can often alert dentists and physicians to the presence of celiac disease, as it often causes certain dental abnormalities. In some instances, this may be the only indication that a person has the disorder. The condition may damage the enamel of the teeth, causing grooves, bands, or pits to appear. The teeth may be discolored with brown or yellow spots or have a translucent appearance. There may also be some deformity in the shape of the teeth in some severe cases.