I was very fortunate to be able to attend the first Inaugural Symposium for Celiac Program on April 11th, 2015 in Norwood, MA. Here practitioners from The Celiac Center at Beth Israel Deaconess Medical Center and Harvard Medical School presented a wealth of information about CD. Included below are some recommendations for screening for CD. As Dr. Fasano pointed out at the symposium, CD can manifest later in life and is not a disease that follows a steady continuum.
Screening for celiac involves a blood test for Human Tissue Transglutaminase IgA Test and Total Serum IgA, and if positive, may be followed by biopsies (5 or more including the duodenal bulb) of the first part of the small intestine. Biopsies if positive are very helpful in determining the progress of the disease as only 60% to 80% of adults have healing in 2 years and in children there is 85-90% improvement in 2 years. You can also have a blood test to determine if you have the gene(s) for CD (which requires no gluten challenge as decribed below).
You must be eating a gluten-containing diet (gluten challenge) prior to the testing for both of these tests to be accurate. This means you must eat the equivalent of 1-2 slices of bread (3 grams) for at least 6 to 8 weeks, but 12 weeks is preferred (because the serum transglutaminase level does not start to increase until about 28 days after ingestion). If you are without symptoms, then you may need to eat gluten for 3 to 4 months.
- Screen everyone in the immediate family when a close family member is diagnosed with celiac disease or Type 1 diabetes
- Test once before puberty and if negative check again during the college years if celiac disease is in the family
- Test when there is a diagnosis of Down’s Syndrome or if there is an itchy skin condition called dermatitis herpetiformis or if you have selective IgA deficiency.
- Screen if you have fatigue, anemia unresponsive to iron supplements, and digestive problems or if you have a diagnosis of rheumatoid arthritis, lupus, Williams or Turner’s syndrome, osteoporosis/osteopenia, or thyroid disease (or a family history). Remember many folks are without symptoms of any kind otherwise called silent celiac.
- Children may present as picky eaters, have constipation or show little growth or actual decline in height/stature.
- When diagnosis is confirmed re-test at 6 and 12 months to measure progress.