Diagnosis/Testing
By
Roxie Johnson
The following is from my own research, and is meant for educational
purposes only. Please consult a qualified medical physician concerning
your particular diagnosis and testing.
It is important to have a formal medical diagnosis of celiac disease as soon as possible for several reasons:
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The diagnosis will dramatically effect your diet for the rest of your life. It is a very stringent diet compared to a diet such as one for wheat intolerance. If you have any doubts about your diagnosis, you will be understandably tempted to not follow such a strict diet.
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Once you have modified your diet (i.e. if you are tempted to stop eating gluten for awhile to self-diagnose), it is very difficult to then get accurate testing for celiac disease.
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It means that others in your immediate family should be screened for celiac disease. The potential serious health problems associated with undiagnosed celiacs should be a strong motivator to have them tested.
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There are implications for more complete yearly physical checkups and testing.
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Without the formal diagnosis, physicians will be less inclined to do family member testing and the more extensive medical follow-ups.
There are four primary considerations that lead to the diagnosis of celiac disease:
- Symptoms
- Blood screening tests
- An upper intestine biopsy
- Improvement in symptoms after following the gluten-free diet
It is essential that the person seeking diagnosis be consuming gluten for a few of months before both the blood screening tests and the biopsy of the upper intestine.
Symptoms are just one part of the diagnosis for the disease (discussed in the About Celiac Disease section). The overt symptoms vary widely from person to person, but help to indicate when a blood screening test should be done. Basic blood work that evaluates iron, folic acid, calcium, the vitamins K, A, D, and E, and zinc levels may also be helpful.
Blood tests are used for screening purposes for celiac disease. It is important to get these tests done at a laboratory that does celiac testing on a regular basis. This is due to the fact that reading the results of some of the tests requires a highly skilled and trained eye and, of necessity, is somewhat subjective. Remember - don't stop consuming gluten until these are done.
RJ's Note: The specific blood tests used for celiac disease screening keep evolving. The websites below get into more specifics on this and is recommended reading, as not all physicians and labs are up-to-date on the latest.
The biopsy of the upper, or small, intestine is necessary to establish diagnosis. The confirmation of damaged villi in the intestine is considered the “Gold Standard” for diagnosing CD. This is usually done following a positive result in the antibody blood tests, but may be done even without a positive blood screening antibody result.
Stool Testing - This testing is done by sending stool samples through the mail to EnteroLab. EnteroLab only claims that their testing determines gluten sensitivity, not celiac disease. This method is still controversial in the medical community as the data from the testing/research has never been published so that it can be verified by the medical community. See note below from the head of the American Celiac Disease Alliance.
http://www.americanceliac.org/diagnosis.htm (American Celiac Disease Alliance)
http://www.celiacdisease.net/testing (University of Chicago Celiac Center)
http://celiaccenter.ucsd.edu (The Warren Celiac Center at UCSD). Or call them at 858-822-1022.
To read an article about convincing family members to get tested, go to http://www.celiacdisease.net/newsletter. Then click on "Summer 2006".
See What is genetic testing and who can benefit from it? on the University of Chicago Celiac Disease Center website. Also see the article on the Celiac.com site titled Ten Facts about Celiac Disease Genetic Testing by Dr. Scot Lewey. Prometheus Labs in San Diego does this testing.
One reason for regular checkups is that celiac disease often causes malabsorption of vitamins and nutrients, which may lead to other medical problems. Also, even if overt symptoms are not present, a periodic celiac screening test is helpful to determine whether gluten is still being ingested. Bone density tests are also often recommended, as osteoporosis can be a result of celiac disease. A gasterentologist in the Chicago area, Dr. Stephen Holland, has made recommendations for check-ups that may be helpful.
There appears to be a very large group of individuals that do not test positive for celiac disease, but do respond very positively to the gluten-free diet. The medical community is now acknowledges the existence of this population of individuals, but do not have any tests as yet besides trying the GF diet.
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The following was copied from a response to the Listserv in 2008:
"The tests being conducted at Enterolab are not 'definitive' for celiac disease. In reviewing information on the Enterolab website, it states they are testing for 'gluten sensitivity' and not celiac disease.
There are well accepted criteria for the detection and diagnosis of celiac disease. The tests used to fulfill these criteria have been subjected to scientific scrutiny and validation. To our knowledge tests of antibodies in stool or saliva have not been validated as a robust test for the diagnosis of celiac disease. Many insurance companies base their decision to cover the costs of testing on the scientific evidence that supports the testing of that individual (indication) and the actual test used (validation).
Our organization relies on the expertise of its physician members, as well as the recommendations of the:
- American College of Gastroenterology;
- North American Society for Pediatric
Gastroenterology,
- Hepatology and Nutrition (NASPGHAN);
- NIH Consensus Panel on Celiac Disease;
and
- Childrens Digestive Health and Nutrition Foundation
for the most current scientifically proven information on the
diagnosis of celiac disease.
The ACDA promotes awareness and understanding of celiac disease
among the general public and to also disseminate scientifically
validated
information to guide physicians in the detection and management
of the disease."
Andrea Levario, J.D., Executive Director
American Celiac Disease Alliance
Email: info@americanceliac.org
Phone: 703.622.3331
A small biopsy of the unaffected skin very close to an eruption or eruption site is taken by a physician and sent to a laboratory for analysis. The presence of IgA deposits confirms a diagnosis of DH. Sometimes the physician may also want blood work done for celiac disease (see above). A small intestine biopsy is not necessary for the diagnosis of celiac disease in persons with DH.
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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.
