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.
Dr. Joseph David sat down with The Social Station Network to discuss acid reflux disease. Watch the video below to better understand acid reflux disease and how to treat it.
Our physicians and staff are happy to answer any questions you have about acid reflux disease. To speak with one of our board certified gastroenterologists, you can reach out to our locations directly by phone, or complete the appointment request form we have online.
By Dr. Paul Berggreen
Paul Berggreen, MD, has been in private practice since 1993. A graduate of LSU, he led the formation of the Arizona Endoscopy Center in 1999 and has served as its medical director since then. In 2007 he helped launch Arizona Digestive Health, now one of the largest gastroenterology groups in the U.S., and still serves as its president. In 2014 he founded Smart Clinic, a mobile communication platform designed to enhance patient engagement, compliance and satisfaction. He also served as director of the Good Samaritan gastroenterology fellowship program from 1998-2013.
Q. What’s the one promise of mHealth that will drive the most adoption over the coming year?
A. Improved compliance. Let’s face it: From a patient perspective medicine has become so complex it’s sometimes almost impossible to be compliant. Yet compliance, whether with a medication, a procedure preparation or a treatment regimen of any sort, is vital to a successful outcome. As doctors, we are using the same communication methods with our patients that we were using 30 years ago – pieces of paper and verbal instruction. If we want better compliance from our patients, we have to come up with better tools for them to use. mHealth is an important tool.
Q. What mHealth technology will become ubiquitous in the next 5 years? Why?
A. Patient-physician communication of some form, using smartphone technology, will become commonplace in the next five years. Changes in reimbursement for chronic disease management and expansion of telemedicine billing codes will push this adoption even further. 70 percent of U.S. adults now have a smartphone, a number that has been increasing exponentially and will likely hit 85 percent or 90 percent in the next five years. It’s the obvious channel of communication, and most people in this field realize that. Patients will demand it and physicians will respond, although doctors have historically been slow to adopt new technology.
Q. What’s the most cutting-edge application you’re seeing now? What other innovations might we see in the near future?
A. I recently viewed a demonstration of a product called Photon Med. It’s basically a consult accelerator on steroids, allowing referring physicians such as ER doctors to consult a specialist and simultaneously send their pertinent information and images to that specialist’s smartphone. The information is relevant and the interface is slick. It’s being rolled out nationwide just this month in selected hospitals, and I think it has great potential. Doctors are going to find that extremely useful. It’s just one example of a new type of tool that makes physicians’ lives more efficient and easier while tying networks of physicians together. The accountable care organization movement and hospital networks will find these types of tools irresistible. We’re going to see more of this type of tool in the near future.
Q. What mHealth tool or trend will likely die out or fail?
A. Patient portals, whether mobile or desktop, are doomed to failure if they do not evolve. The only thing driving physicians to encourage patient portal sign-up is the carrot-and-stick of meaningful use stage 2. Otherwise, portals are of very limited use in their current form. “Change or die” is particularly applicable here.
Q. What mHealth tool or trend has surprised you the most, either with its success or its failure?
A. Fitness trackers and their rapid adoption have been somewhat of a surprise. This is particularly true since most people who use these are very much interested in their health and are simply using these tools to validate their activity. This probably accounts for the fairly high rate of abandonment of these tools at the one-year mark, as noted in the media. For these tools to be truly useful, there needs to be application to patients with chronic diseases that can show improvement in measurable outcomes.
Q. What’s your biggest fear about mHealth? Why?
A. Compartmentalization. Currently, electronic health record companies are jealously guarding their data and are very reluctant to allow any significant interoperability. If mobile health innovators are co-opted or overrun by the large EHR companies, that compartmentalization and lack of interoperability will persist in the mHealth arena. That will likely inhibit true spread of this important technology for patient benefit. Unless true data interchange is facilitated, the healthcare cost curve will not improve.
Q. Who’s going to push mHealth “to the next level” – consumers, providers or some other party?
A. It’s going to be the electronic health records companies responding to the demands of the consumer. Very few of these companies now have a viable mobile product for patients, but physicians will adopt these tools widely when they are made integral to their existing electronic health records systems. It’s not that doctors don’t want to adopt these tools; it’s that they have so many demands on their time and their resources that they are hesitant to adopt another add-on software product. Once it’s made easy, adoption will occur very quickly. Physicians see the value; they just don’t want any more pain.
Q. What are you working on now?
A. Two years ago I made a smartphone app for my group, Arizona Digestive Health, to help with colonoscopy preparation. We performed two studies to validate its utility, and both were remarkably positive and received national presentations and press coverage. I’ve since taken that concept and built upon it, and the culmination is Smart Clinic. A patient-facing smartphone app connecting to a web interface in the medical back office, Smart Clinic integrates with the EMR and sends structured procedure preparations to the patient, enables prep and medication compliance tracking, includes instructional text, images and videos and even sends patient satisfaction surveys and clinical surveys to the patient, all returning to the office in an easy-to-use and structured format. Smart Clinic is now the official mobile app of the American College of Gastroenterology. With Smart Clinic, we finally have a new tool to communicate with our patients and promote compliance.