Celiac disease (CD) currently affects approximately three million Americans with an estimated 97% undiagnosed. The symptoms of celiac disease can cover a broad range including bloating, gas, anemia, hair loss, chronic constipation, diarrhea, fatigue, lack of concentration and skin rashes but the most common symptom among children is irritability. Other disturbing symptoms in children are delayed growth or puberty and thinning bones which can lead to increased fractures.
CD is defined as a heightened immune response to gluten, the protein molecule of wheat and other related proteins such as barley, spelt and rye, which has resulted in “autoimmune enteropathy” or damage to the small intestine. The intestine is lined with small tiny fingers or “shags” (like shag carpeting) called villi that greatly increase the surface area of the intestine maximizing absorption of nutrients. For individual diagnosed with celiac disease, the villi become damaged and flattened thereby drastically decreasing the possibility of nutrient absorption resulting in deficiencies.
Testing for celiac disease can prove to be frustrating. The current recommendations according to the National Foundation of Celiac Awareness are: anti-tissue transglutaminase antibody (iTG – IgA and IgG) and total serum IgA. The test recommended for children under two years old is anti-gliadin antibody (AgA –IgG and IgA). It is important to be consuming gluten at the time of these tests as they measure the response to gliadin, one of the peptides of gluten. Otherwise the test will come out negative. If the blood test is positive, a colonoscopy and an upper endoscopy will be ordered to confirm whether villi damage is present. Keep in mind a positive blood test is not a CD diagnosis. The verification of damaged villi is what warrants the official diagnosis. One can also have a genetic test done through blood or cheek swap to see if they are susceptible to CD. Ninety plus percent of people diagnosed with CD carry one or both of the genes, HLA DQ2 and HLA DQ8. If you carry one or both of these genes, but test negative to everything above, there is a strong possibility you could be gluten sensitive and develop CD later in life. Please note, detection of the genes does not mean you have CD but rather the potential to develop it. If the genes are absent, the likely hood of one developing CD is very slim.
Most of the tests above can be ordered through your general practitioner with the exception of the gene cheek swap. If you test negative to the standard tests but have a strong suspicion that you or your child could be gluten sensitive, there are new gluten sensitivity panels available that can test for sensitivities to all 10 peptides of gluten. Keep in mind the gluten sensitivity panel is currently debated by some medical circles and is typically not covered by insurance.
Testing is especially important if CD runs in your family. According to the University of Chicago’s Celiac Center, the prevalence of CD in the US is “1 in 133” for average healthy people. For those with first-degree relatives (parent, child, sibling) diagnosed with CD, the prevalence makes a drastic jump to “1 in 22.” In people with second-degree celiac relatives (aunt, uncle, cousin), it’s “1 in 39.”
Keep in mind that any negative test result does not mean that it is safe for you to consume gluten. The gold standard, as of right now, is a gluten challenge. Take gluten out of your diet and if you feel better, there is a good possibility you could have a sensitivity to it. The average time for a person with obvious symptoms to be accurately diagnosed with CD is 6-10 years. A lot of damage can be done during that time. In a landmark US prevalence study, 60% of children and 41% percent of adults were asymptomatic (without symptoms) when diagnosed. CD can be silently damaging the body. In a 1999 study, children diagnosed between the ages of 4-12 are 50% less likely to develop an auto-immune issue caused by CD making early detection crucial.
The prescription for CD or Non Celiac Gluten Sensitivity (NCGS) is a strict lifetime adherence to a gluten-free lifestyle. Besides the obvious foods such as bread, cake, crackers and pasta, gluten can also lurk in soy sauce, gravies, adhesives, play dough, skin products (wheat germ oil) and vitamins to name a few. The gluten-free market has grown tremendously making it easier for a person with gluten sensitivity to eat safe foods. There are also support groups available to connect with others who are gluten sensitive. If you or your children are diagnosed, reach out for help. Taking control of your family’s health can be very empowering and prevent serious health issues down the road.
Kim Rice is a wellness coach and Certified Gluten Practitioner. She is a warrior mom of three children writing and speaking about gluten-free living, celiac disease, autism and nutrition. Kim maintains her own blog (ThrivingGF.com), and leads several local gluten-free support groups. She resides with her family in Pleasanton, California.