About
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.
- left untreated, can result in many complications. These include skin rashes, lactose intolerance, infertility, bone weakness, nerve damage, and an increased chance of developing lymphoma.
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 at www.cureceliacdisease.org/living-with-celiac/guide/fact-sheets).
Risk factors for celiac disease (besides having family members with it) are listed on the Mayo Clinic website as Type 1 diabetes, autoimmune thyroid disease, Down syndrome, and microscopic colitis.
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:
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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. www.cureceliacdisease.org/email-newsletter, and then in the Archives click on "Summer 2007, History of Celiac Disease".
The increasing rate of celiac disease in the general population is discussed in a feature article on the NIH Celiac Disease Awareness Campaign website titled A Changing Envionment and the Increasing Prevalence of Celiac Disease. 12/09
A study in 2012 of 7,800 people confirms the findings that 1% of non-Hispanic whites in the U.S. have celiac disease, but most are not aware they suffer from it.
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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
An individual with celiac disease, Cecilia Bonaduce, discusses the emotional aspects having celiac disease: That Girl - 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.
Lactose intolerance and celiac disease - A 2005 Italian study published in Digestion studied 54 people with lactose intolerance and 50 random people. 24% of those with lactose intolerance were found to have celiac disease, compared to 2% of the control group. Dr Peter Green suggests that all patients who test positive for lactose intolerance be screened for celiac disease.
Most persons newly diagnosed with celiac disease are advised by their physicians to avoid lactose for at least the first six months.
An article in Allergic Living in April 2013 discussed the relationship between these two conditions. "When Dairy Intolerance Joins Celiac Disease".
Celiac Disease and Diabetes
Celiac Disease and Anemia:
Gluten Intolerance Group, Education bulletins: Health and Wellenss Celiac Disease and Anemia
Iron Deficiency and Celiac Disease: An article in the Living Without publication. 2/13
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.
An article "GI Disorder and Osteoporosis" appeared in the San Diego Union Tribune on March 2013. It states that those with diagnosed celiac disease are at higher risk for osteoporosis due to malabsorption, but the risk for those with only gluten intolerance is greatly reduced.
Celiac Disease and Migraines:
Migraine Linked to Celiac Disease (2003) - https://sites.google.com/site/jccglutenfree/migraineheadache
Migraines More Likey with Celiac Disease, Study Says (2012). http://news.yahoo.com/migraines-more-likely-people-celiac-disease-study-says-180409480.html
Celiac Disease and Infertility and Miscarriages: Article on the celiac NIH site on reproductive problems. Article on jccglutenfree.. NIH website. Medpage Today article "Celiac Disease May Disrupt Fertility", 10/12
Celiac Disease and dental problems: Article on CeliacDisease.net newsletter (click on "Winter 2008").
Both mouth ulcers and dental enamel problems
Study of persistent villous atrophy in CD: "Mortality Rates for Celiacs with Persistent Villous Atrophy Similar to Those with Healthy Guts". 2/13
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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. See "Recommendations for the Newly Diagnosed" for tips on starting this new lifestyle.
Healing of Intestines: Recent research has shown that in adults, even though some of the symptoms of celiac disease improve fairly quickly, tissue damage often persists after 5 years of adherence to a gluten-free diet. See the article on the Celiac Disease Awareness Campaign website: Intestinal Damage from Celiac Disease Persists in Adults, Even with Gluten-Free Diet.
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).
Follow-up care recommendations:
- 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 (see below)
- Also see "Recommendations for the Newly Diagnosed"
Family member testing: Some family members may be reluctant to get tested for celiac disease even though one family member has tested positive for it. The National Foundation for Celiac Awareness (NFCA) has developed some information guides to help you discuss this with your family members. The guides include "Celiac Disease in Families", "Talking to Your Family About Celiac Disease" and "Who is at Risk?"
Introducing gluten to babies: An article on About.com in October 2012 discussed the research done on when the best time is to introduce gluten to babies. Study: Take Cautious Approach When Introducing gluten to Babies.
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)
- Celiac Center at Beth Israel Deaconess Medical Center, www.bidmc.harvard.edu/YourHealth/ConditionsAZ/CeliacdiseaseCeliacsprue,
617-667-1272
- Celiac Disease Center at Columbia University, www.celiacdiseasecenter.columbia.edu,
212-305-5590
- Celiac Disease Clinic at Mayo Clinic, www.mayoclinic.org/celiac-disease,
507-284-5255
- Center for Celiac Research, University of Maryland, www.celiaccenter.org,
410-706-5516
- University of Chicago Celiac Disease Program, www.celiacdisease.net,
773-702-7593
- William K. Warren Medical Research Center for Celiac Research, http://celiaccenter.ucsd.edu/,
858-534-1022
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