About Celiac Disease
Celiac Disease Dermatitus Herpetiformis

Treatment, Healing, and Follow-up Care

Recommendations for the
newly diagnosed
Diagnosis/Testing About Gluten Sensitivity/Intolerance
Recommendations for those
suspecting celiac disease
Associated Diseases/Problems Research

Recommendations for those
long-ago diagnosed

Food Ingredients
and the gluten-free diet

 

Celiac Disease
  • is the most prevalent auto-immune disease in the world. Experts judge the prevalency rate to be at least 1 in every 133 persons in the United States. That means three million people in the U.S. could be living with celiac disease.
  • is a genetic, inheritable disease. One in 22 first-degree relatives could develop CD in their lifetime.
  • is under-diagnosed. It is thought that approximately 95% of persons who have celiac disease in the U.S. are undiagnosed.
  • is not age dependent. A person may be born with CD or develop it at any age. Suspected triggers include stress, trauma (surgeries, pregnancy, etc.) and viral infections.
  • presents with a wide range of symptoms. (see below)
  • may be asymptomatic. Upt to 38% of people diagnosed with celiac disease have no symptoms.
  • has no cure. A life-long strict adherence to the gluten-free diet must be followed.

Delay in diagnosis: The average delay in diagnosis for a person with symptoms is 4 years (University of Chicago Celiac Center "Facts and Figures of Celiac Disease" factsheet).

Risk factors for celiac disease (besides family members) are listed on the Mayo Clinic website.

Symptoms and associated health problems:
The ingestion of gluten (a protein in wheat, barley, and rye) causes an autoimmune response that damages the small intestine. This, in turn, causes the malabsorption of nutrients which can lead to many different health problems and/or symptoms. the National Foundation for Celiac Disease Awareness states that there are over 300 symptoms. These symptoms include:

stomach upset diarrhea osteoporosis dental enamel problems
bloating distention migraines mind "fogginess"
indigestion/gas weight loss anemia irritability/ depression
poor growth in children foul-smelling or
grayish stools
general weakness skin rash that lasts
bone & joint pain cancer miscarriages & infertility
low vitamin levels - iron,
calcium, folate, B12
constipation nausea fatigue malnutrition
muscle cramps tingling in legs and feet (neuropathy) mouth ulcers  

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There are many more symptoms/problems that may be the result of celiac disease. Furthermore, the symptoms of celiac disease vary widely from person to person both in severity and which, if any, symptoms. A person may have just one of the symptoms, many of the symptoms, or have no overt symptoms. Often these symptoms come and go, making it even more perplexing.

An article on the history of celiac disease can be found in the Summer 2007 newsletter by the University of Chicago Celiac Disease Program.

The increasing rate of celiac disease in the general population is discussed in an article on the NIH Celiac website. It talks about the latest findings, and theories about why this is occurring. 12/09

An article titled Gluten then and now in Natural News.com discusses the history of celiac disease, gluten sensitivity and gluten in our products. 6/11

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Informative Recommended Websites

YouTube Videos
The Warren Center for Celiac Disease Research in San Diego: 2007 lecture, 2008 lecture and 2010 lecture.
The Celiac Center at Columbia University: 2009 lectures (skip first video which is basically an introduction.)
A brief review of symptoms by persons in San Diego: The Faces of Celiac Disease

Diseases/Problems Associated with Celiac Disease
Associated Autoimmune Diseases are discussed on the GIG website.
Diseases linked to celiac disease are discussed on an NIH website.
Complications from celiac disease are discussed on the Mayo Clinic website
Sjorgrens and celiac disease on NIH website, pub med
celiac disease and thyroid disease on the GIG website.
www.celiac.nih.gov/NewsletterWinter11 - Study finds connection between Restless Leg Syndrome and celiac disease.

Celiac Disease and Diabetes

Celiac Disease and Anemia: Gluten Intolerance Group, www.gluten.net/publications
Celiac Disease and Thyroid Conditions: Gluten Intolerance Group, www.gluten.net/publications
Celiac Disease and Osteoporosis: Article on NIH website What People With Celiac disease Need to Know About Osteoporosis. Article in US News about men with celiac disease and the implications for osteoporosis. Article in the Spring 2010 NIH Celiac Newsletter on recent research findings.

Celiac Disease and Infertility and Miscarriages: Article on the celiac NIH site on reproductive problems. Article on jccglutenfree. Article on CeliacDisease.net newsletter (click on "Winter 2008").
Celiac Disease and Dental problems: Both mouth ulcers and dental enamel problems. NIH website

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Treatment, Healing, and Follow-up Care
Treatment for celiac disease is simple: a strict gluten-free diet for life. There are no medications to take, and there is no cure at this time. Vitamin and mineral supplements are often recommended because of malabsorption issues.

Healing of Intestines: A study conducted at Mayo Clinic that it took two years on the GF diet for 34% of the adults observed to have mucosa healing of the small intestine. It took five years for 66% to have healing. Poor compliance with the GF diet and/or completely flat villi at diagnosis were strongly associated with persistent mucosal damage. Read abstract of article in the American Journal of Gastroenterology, 2010.

Once diagnosed with celiac disease, there is standard follow-up care that should occur. See the Columbia celiac center discussion on this: www.celiacdiseasecenter.columbia.edu and http://www.celiacdiseasecenter.columbia.edu/C_Doctors/C07-Management.htm (written for doctors).

The following is a brief summary of some of what is currently thought of as appropriate follow-up care.

  • An appointment with a dietician familiar with celiac disease should be scheduled. Unfortunately, as yet this is not covered by insurance.
  • The patient should be strongly encouraged to join a local support group. This is very inexpensive and has been found to greatly increase chances of diet compliance.
  • Because celiac disease causes malabsorption, testing for iron, calcium, zinc, magnesium, vitamin D, vitamin B6 and B12, and folate deficiencies is suggested. These should be repeated at yearly physicals.
  • A bone scan should be taken to determine if the patient has osteopenia or osteoporosis.
  • Blood anti-body levels should be taken at yearly check-ups to help determine diet compliance.
  • A re-biopsy in a year should be considered.
  • First degree family members should be screened for celiac disease with a CD blood panel.
  • Also see "Recommendations for the Newly Diagnosed"

Research
The following sites have summaries of current and past research relating to celiac disease:

There was an article published in the Los Angeles Times in 12/09 summarizing current research: "New Hope for Celiac Sufferers?"

Research Centers (in alphabetical order)

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