Educating doctors about celiac disease
Dr. Burkhart reports on her trip to Chicago to participate in specialized medical training
A Happy New Year to everyone! The holidays are winding down and 2013 is off to a sunny start here in California.It was an equally beautiful, albeit colder climate, a few weeks ago in Chicago when I had the pleasure of participating in the University of Chicago Celiac Disease Center Preceptorship Program.
The program is a yearly event coordinated by the center’s founder and director, Stefano Guandalini, MD, and his staff. Dr. Guandalini is one of the world’s leading experts in celiac disease and non-celiac gluten sensitivity. He started the preceptorship seven years ago to educate and update physicians and other health care professionals on celiac disease and non-celiac gluten sensitivity.
Approximately 40 medical professionals, including physicians, nurses and dietitians, were chosen from a larger pool of applicants to participate. The rising level of interest in the program is a positive sign that the American medical community is motivated to better serve this population. In addition to two days of intensive formal instruction and hands-on training, we were served gluten-free lunches and enjoyed a collegial gluten-free hotel dinner together. I look forward to staying in touch with some of my colleagues from other parts of the country.
It was an excellent update on the field, detailing what’s new and what’s coming up, and offering the opportunity to ask the experts questions that have arisen over the years as I treat patients and track research developments. I thought the larger community might be interested in some of the information and developments:
- Best Tests to Diagnose and Monitor Celiac Disease: Although the Tissue Transglutaminase (tTG), in conjunction with Total Serum IgA, is generally still the top choice for a basic celiac test in adults and older children, Deamidated Gluten Peptide (DGP) is the preferred screening test in children under two years old. The DGP is also what should be used to monitor a celiac patient for dietary compliance.
- The intestinal biopsy – The difficulty in obtaining an adequate biopsy was discussed. Physicians should be aware of the challenges, including the optimum number of tissue samples that should be taken and proper location from which to take samples. Patients may wish to educate themselves on the topic before undergoing a biopsy, and bring their questions to an appointment.
- Is the biopsy always needed? There is a small subset of patients in whom the biopsy may be avoided, but at this point, most all patients need a biopsy for confirmation of diagnosis. Performing a biopsy also allows other possible diagnoses to be evaluated.
- Non-Celiac Gluten Sensitivity (NCGS) –The symptoms mimic celiac disease, but the antibody tests and/or biopsy results are negative. The true incidence of NCGS is unknown because there is no diagnostic test for it. However, NCGS is now a recognized entity by the traditional medical community. This is validation for patients who for years have known gluten makes them sick, but have tested negative for celiac disease.
- Inflammation found in NCGS – A new study looked at the villi of the small intestine of NCGS patients with an electron microscope, a very strong microscope not available at most hospitals. Intestinal inflammation was found in these patients. Something is going on in their intestine, but there is a lot more to learn. NCGS is a new and growing area of scientific study.
- Post-diagnostic follow-up for patients with celiac disease is very poor – After diagnosis, only 44% of patients saw a physician and only 3% saw a dietitian for follow-up. Please be proactive with your health. If your health care providers are not following up with you, take the initiative and make the appointment.
- The psychological aspects of celiac disease– I urge patients, parents and health care providers to remember this component of anyone’s health, including your own. Following a special diet can be challenging, especially for children. Health care professionals should remember to address the psychological component of living with food allergies and special diets.
- True Food Allergies and Pseduo Allergies True food allergies are what we in the medical community think of as “ EpiPen worthy.” These are the types of reactions that cause immediate hives, swelling, throat closing or anaphylaxis. People with true food allergies should have an epinephrine injector available at all times. These true allergies, however, can be mimicked by pseudo- allergies to things such as histamine or tyramine. Histamine is found in foods such as cheese, tuna, champagne,salmon or shellfish. Tyramine is found in chocolate, red wine, aged cheeses, fermented foods, soy sauce and gluten-free tamari sauce. These types of reactions do not require you to carry an epinephrine injector. You may want to work with your health care practitioner or allergist to determine how this information applies to you.
- The future of food allergies– Soon you will be able to have a blood test in which the sample is placed on a computer chip — an allergen chip–sent via computer to a central database, and the profile will be read and sent back to your physician, eliminating the wait time for results.
- Lactose Intolerance– Many people are lactose intolerant and experience stomach pain, gas, bloating and/or diarrhea when they eat dairy products. But, did you know that 70-80% of people with lactose intolerance also have nausea, vomiting, headaches, poor concentration, fatigue and joint pain?
- Irritable Bowel Syndrome – The American College of Gastroenterology now recommends that all patients diagnosed with IBS be screened for celiac disease.
Finally, you will have a unique opportunity to enjoy the University of Chicago Celiac Disease Center’s hospitality for yourself when it hosts the 15th International Celiac Disease Symposium from September 22-25, 2013. The website is www.ICDS2013.org.
THIS ARTICLE IS COPYRIGHTED BY AMY BURKHART, MD, RD. IT MAY NOT BE COPIED, POSTED, OR DISTRIBUTED WITHOUT PRIOR WRITTEN PERMISSION. ALL RIGHTS RESERVED.
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Past columns by Dr. Burkhart:
April/May 2016: Reasons People Follow a Gluten Free Diet: 7 Types of Gluten Free Dieters
March 2016: Ten Positive Aspects of a Celiac Disease Diagnosis
February 2016: Gluten Causes Keratosis Pilaris (a.k.a. “Chicken Skin”): Fact or Myth?
January 2016: Fingernail Changes in IBS,Gluten Disorders and Celiac Disease “A window to health”
December 2015: 20 Gluten-Free Gift Ideas: From Budget to Luxury, Sentimental to Practical & More
November 2015: Cold Sores, Canker Sores and Gluten
October 2015: Celiac Disease and Gluten Sensitivity Research: Snippets from ICDS 2015 (Part 2)
September 2015: Celiac and Gluten Sensitivity Research: Ten Snippets from ICDS 2015
July/August 2015: A New Home Test To Monitor Gluten Exposure
June 2015: Six Reasons to Test for Celiac Disease Before Starting a Gluten-Free Diet
May 2015: POTS, Celiac Disease and Gluten: An Undiscovered Connection?
February/March/April 2015: Arsenic in the Gluten-Free Diet: Facts and Tips
December 2014/ January 2015: The Microbiome and Celiac Disease: A Bacterial Connection
November 2014: Celiac disease and gluten sensitivity: The doctor-patient disconnect
October 2014: Should You Trust Gluten-Free Labels?
September 2014: Triggers for celiac disease: One possible answer
July/August 2014: Ten Tips for a Healthier Gluten-Free Diet
June 2014: Back Pain and Gluten
May 2014: Self-Diagnosis of Gluten Sensitivity: Four Alarming Trends
April 2014: Update on Restaurants and Gluten-Free Dining
March 2014: Histamine Intolerance: Could it be causing your symptoms?
February 2014: Celiac Disease and Non-Celiac Gluten Sensitivity (Reprinted with permission from Sonoma Medicine)
January 2014: Four Vitamin Toxicities on a Gluten-Free Diet
December 2013: Move Over Gluten-Free, Low FODMAP is Next
November 2013: SIBO, Gluten and IBS: What Is The Connection?
October 2013: Pesticides, Wheat and Gluten Sensitivity: What is the Connection?
September 2013: Is gluten really the culprit in gluten sensitivity?
August 2013: Clarifying the Gluten-Free Labeling Rule
June/July 2013: No such thing as Mild Celiac Disease
May 2013: Magnesium Deficiency
April 2013: Six Reasons to test for celiac disease before starting a gluten-free diet
March 2013: Why am I having migraines?
February 2013: What is fructose malabsorption?
January 2013: Educating doctors about celiac disease
December 2012: Are supplements to digest gluten safe and useful?
November 2012: Top 5 reasons for persistent symptoms after Going Gluten Free