by Alyssa Simpson, RD, CDE, CLT
If you have symptoms associated with celiac disease, it can be tempting to try eliminating gluten from your diet to see if you feel any better. In this post, I would like to share with you the top 3 reasons why it is important to get tested for celiac disease BEFORE adopting a gluten free diet.
Reason #1: You must be consuming gluten for the celiac test to be valid
If you are following a gluten free diet, the biomarkers that are used to diagnose celiac disease may appear normal. According to Joseph David, MD of Arizona Digestive Health, the blood values are not the only indicator that would be affected by gluten consumption. “In addition to biomarkers being falsely normal, small bowel biopsies could also look normal if you have been off gluten for an extended period of time,” Dr. David explains. Therefore, if you have eliminated gluten from your diet for a period of time before getting tested, you could have a false negative test result.
According to Melinda Dennis MS, RD, LDN, lead author and editor of celiacnow.org and an executive council member of the North American Society for the Study of Celiac Disease, gluten must be present in the diet from anywhere between 2-6 weeks prior to testing to get an accurate result.
Reason #2: Your symptoms might be caused by something other than celiac disease
If you feel better without gluten in your diet, you may assume this is an indication that you do in fact have celiac disease. However, there are other reasons you may feel better avoiding wheat. Symptoms associated with wheat can have a number of potential causes, including NCGS (non-celiac gluten sensitivity), wheat allergy, and wheat intolerance.
Non-celiac gluten Sensitivity (NCGS)
NCGS is not well understood, and is defined as “one or more of a variety of immunological, morphological or symptomatic manifestations that are precipitated by gluten in individuals in whom celiac disease has been excluded.” Because we don’t as of yet know of any valid biomarkers to identify it, there is no valid test for NCGS. It is believed to be more prevalent than celiac disease.
A person can also have a wheat allergy, which is a different type of immune response to wheat than what happens with celiac disease. Wheat allergy can result in similar gastrointestinal symptoms, but is not associated with the same type of intestinal damage as celiac disease.
In the case of wheat intolerance, it is the carbohydrate portion of the wheat, not the gluten protein, that leads to symptoms. Wheat contains a type of carbohydrate known as a fructan, which when not well absorbed, can cause digestive symptoms.
In each of these cases, the treatment might be different. For example, if you are wheat intolerant and are reacting to the carbohydrate portion of wheat, you may not see much improvement by just eliminating wheat and may also need to avoid other sources of fructans or other FODMAPS (fermentable carbohydrates). If you have a wheat allergy, you would need to avoid wheat but not necessarily rye and barley or their derivatives, such as beer or malt flavoring. If you have NCGS, you may feel better by reducing your gluten intake but may not have to be as careful about minute sources of gluten or cross contamination like someone with celiac disease would.
If you do have celiac disease, additional medical screening and monitoring will be essential. According to Michael R. Mills MD, MPH of Arizona Digestive Health, “celiac disease is a systemic disease, and is associated with other medical problems, including rashes, thyroid problems and colitis, and rarely can lead to small intestinal lymphoma. Confirmation of celiac disease benefits you and your doctor in looking at the bigger picture over time, and monitoring your gluten free status.”
Reason #3: You need to know how careful to be, or how careful not to be
Those with celiac disease have to be very careful about avoiding even small amounts of gluten. In fact, this may be the most important reason you will want to know whether you have celiac disease vs some other type of wheat or gluten reaction. People with celiac disease have to be extremely careful with food preparation, when grocery shopping, and when dining out to avoid cross contamination. For these folks, even a crumb of bread has the potential to trigger an inflammatory response.
According to Amy Burkhart MD, RD, practicing physician and board member and medical advisor of the Celiac Community Foundation of Northern California, “It is not clear how strict the gluten free diet needs to be for patients with NCGS.” She also explains that although celiac disease is life-long, we do not know about NCGS. “Why subject someone to a lifelong, strict gluten-free diet if they don’t need it? The social and psychological implications can be vast.”
It is my experience that those with NCGS are not as careful about gluten avoidance as those with celiac disease. Many people with NCGS allow themselves to “cheat” on occasion, or avoid the more significant sources of wheat while not paying much attention to gluten-containing ingredients or cross contamination. While this behavior may be okay for someone who truly has NCGS, allowing occasional or minute amounts of gluten could be very damaging to someone with celiac disease.
One last note – if you do test positive for celiac disease, it is recommended that all first-degree family members be tested. Silent (asymptomatic) celiac disease is very common, so first degree relatives should be tested regardless of whether or not they have symptoms. If you eliminate gluten before you’ve tested for celiac disease, you will not know if your family should have been tested.
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