Recommendations for Persons Suspecting

Recommendations for Persons
Suspecting Celiac Disease
By Roxie Johnson

You may have celiac disease, or you may have something called "gluten sensitivity". They both can cause very similar symptoms, but it makes a big difference which one you have. Or you may have something completely different going on. The important thing is to discover exactly what is causing your problems so you'll know how to "fix it" and become healthier.

The following are recommendations I would make to a friend as a result of my own experiences. It is not meant to to be a substitute for medical advice - please consult your own medical team regarding treatment, diagnostic and medical concerns.

Watch the 3 minute YouTube video The Faces of Celiac Disease to see real people talking about before and after being diagnosed with celiac disease.

If you think you might have celiac disease, it is important to do the following:

Don’t stop eating gluten-containing foods until you have been tested. You must be consuming gluten for at least two months before the blood samples are taken for the celiac screening test. Don't be tempted to self-diagnose by changing your diet before being tested, as it will then be difficult to get a confirmed diagnosis.

Confirmed diagnosis is important as it will effect your future medical care and the testing of other family members. And because it is a stringent diet that must be followed for the rest of your life, it will be easier to motivate yourself to conscientiously maintain the gluten-free diet with a confirmed diagnosis.
Educate yourself about celiac disease.

Read about the history and current information about celiac disease from a December 2005 article titled Illness of the Intestines Gets Notice in U.S. originally in the Wall Street Journal.

Go to the About Celiac Disease section of this website to find references to reputable websites describing celiac disease. Read the celiac disease "awareness" brochure - "Celiac Disease - Are You The ONE?" created by the Celiac Disease Foundation. It can be downloaded at www.celiac.org.

Learn the prevalency rates in the United States, in case you need to discuss this with your physician (for a summary of the recent University of Maryland study, click on Prevalency Study.)

Learn about celiac screening tests in the "Diagnosis/Testing" section of this website. The Prometheus Labs website (see SD Resources section, "Medical") has two on-line videos on this topic as well.

An article in December 2009 in the New York Times discusses the difficulties of getting diagnosed: The Overlooked Diagnosis of Celiac Disease
Consult a physician. Present a list of reasons to your physician about why you suspect that you have celiac disease, and request a blood-screening test. Many physicians are still not well aware of the many varied symptoms of celiac disease, and how common it is in the United States. Be prepared with information to share with your physician if it is needed.

Patients may be seen at two Celiac Disease Clinical Centers located in San Diego. These clinics work in conjunction with the Warren Center for Celiac Research at UCSD. Children are seen at the Pediatric Center at Children's Hospital, and adults (18 and above) are seen at the Thorton Hospital/Perlman Center on the UCSD campus.

Additional recommendations for physicians may be found in the San Diego Resources section of this website. These physicians were recommended by members of the local CSA group over the last few years.

The information, including opinions and recommendations, contained in this website is for educational purposes only. Such information is not intended to be a substitute for professional medical advice, diagnosis or treatment. No one should act upon any information provided in this website without first seeking medical advice from a qualified medical physician.