The Celiac Sprue Research Foundation is back on its feet and is kicking it off with what they are calling a “comeback conference” on Saturday, May 22, 2010, from 8:30am-4:30pm at Stanford University in Palo Alto, California.
The main purpose is to educate participants about recent developments in Celiac research, provide a networking opportunity for Celiacs to meet one another, and to enjoy gluten-free snacks and lunch. Read More »
This article focuses on the two main antibody blood tests for celiac disease. It will tell you what each test looks for and what the results mean.
The two blood tests recommended when testing for celiac disease are the AGA-IgA test for gliadin (wheat proteins) as well as the tTG-IgA test for tissue transglutaminase.
Recent research indicates the blood tests most doctors are using, tTG & EMA, are not as reliable as first thought. Young children, elderly, smokers, the very ill and the not very ill can be missed. EMA, or endomysial antibodies has fallen out of favor so they will not be discussed.
Preparation for Testing
Make sure when being tested that you are on a gluten-containing diet, because the antibodies the tests look for would disappear if you are were gluten-free. Once you go gluten-free, future testing is unreliable.
AGA – The Test for Gluten Sensitivity
The AGA-IgA has fallen out of favor for CELIAC DISEASE, but it tests whether an immune reaction against GLUTEN (gliadin) is present in the system – it detects a GLUTEN SENSITIVITY reaction. You can have gluten sensitivity without developing the lesion that is characteristic of celiac disease. That is, you can have gluten sensitivity without celiac disease.
tTG – The Test for Celiac Disease
tTG tests for tissue transglutaminase antibodies, or antibodies against your own tissues. The tTG blood test does NOT tell you if you have celiac disease per se. It tells you the likelihood that villous atrophy will be discovered if an endoscopy with biopsy is performed. The higher the number, the more likely you have enough damage that one of the samples would show villous atrophy.
One thing to consider is that you have over 20 feet of small intestine. Biopsy samples are tiny and only about 5 are taken. How much damage is required before a positive biopsy sample is found?
Also, you can also have the beginning stages of celiac disease and the test results will be “negative” now, but if you were tested at a later date they could rise, making you positive. That is, the levels of antibodies now may not indicate probable intestinal damage enough to be found on endoscopy with biopsy. But they can rise over time – one month, six months, a year.
In one study we reviewed while creating the medical manual, Recognizing Celiac Disease, of the children who tested positive in the study, 40% had tested negative 5 years previously.
No test is 100% accurate. Determining celiac disease is still a judgment call. Even if the tests come back negative, try a strict 100% gluten free diet to see if symptoms improve. If they do, ask your doctor to take multiple vitamin and mineral levels to determine whether deficiencies exist.
Page 30 in Recognizing Celiac Disease lists the vitamins and minerals the NIH recommends checking: vitamins A, D, E, K, B12, folic acid and minerals calcium, iron, phosphorous.
The symptom charts in the book list which deficiencies cause which symptoms so you can determine which nutrient levels to test and give your doctor reasons to test for them. (Doctors will not take nutrient levels unless there is a reason to take them.) Correct the nutrient deficiencies and you will correct the symptoms in many cases.
A diagnosis is just a diagnosis. Good health is the most important thing.
For more information on the tests click here.
For more information on Recognizing Celiac Disease click here.
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Author Information: John Libonati, Philadelphia, PA
President-elect, Celiac Sprue Association (CSA).
Publisher, Glutenfreeworks.com.
Editor & Publisher, Recognizing Celiac Disease.
John can be reached at john.libonati@glutenfreeworks.com.
The Celiac Sprue Association 32nd Annual CSA Conference will be held at Erie, PA from Oct. 30th through Nov. 1, 2009 at the Sheraton Erie Bayfront Hotel and the Bayfront Convention Center.
Serving as local hosts are the members of CSA Gluten Free Erie, PA Chapter #135.
Under the 2009 theme of “Research, Education and Support,” the 2009 CSA Conference features over 15 speakers including leading experts in the field of celiac disease, a conference exhibit hall featuring a variety of exhibitors to assist individuals with celiac disease, networking through the “Making a Difference Forum,” cooking demonstrations, youth and young adult programs, an historical tour of Erie and an “Oktoberfest Buffet.”
The CSA Conference is an excellent opportunity to meet and communicate with the leadership and elected CSA representatives, as well as share and learn from other individuals and families dealing with celiac disease.
The 4th Annual CSA Dietitian Day will precede the Conference, scheduled for Oct. 29th. At the conclusion of Dietitian Day, participants will be able to:
1. Describe the pathophysiology of celiac disease
2. Define medical nutrition therapy for celiac disease
3. Identify at least two management strategies for celiac disease
4. Describe the relationship between type 1 diabetes mellitus and celiac disease
Continuing education units are available.
The Celiac Sprue Association®, the largest non-profit celiac support group in the United States, is committed to helping individuals with celiac disease to live well through one-on-one support and the latest research-based and medically approved information to help them manage their health.
For more information on the CSA Conference contact the CSA website, contact CSA toll-free at (877) CSA-4-CSA (877-272-4272) or email CSA at celiacs@csaceliacs.org.
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