Many people ask me “ Why can’t I just start a gluten-free diet and see if I feel better? Why do I need to spend the money on testing? I just won’t eat gluten if it makes me feel sick.” I hope that the following points clarify why appropriate testing for celiac disease is important before starting a gluten-free diet or putting your child on one. I cannot stress enough the importance of testing for celiac disease. The screening is simple and inexpensive. The cost of not testing is much greater.
1. YOU HAVE CELIAC DISEASE
If you have celiac disease and you stop eating gluten, guess what happens? You feel better! If you have non-celiac gluten sensitivity (NCGS) and you stop eating gluten, what happens? You feel better! You can’t tell the difference between these two entities without testing.
If you eliminate gluten before testing for celiac disease- the celiac tests are invalid.
Why is that important? We don’t understand a lot about NCGS yet, but so far it appears to be different from celiac disease in important ways. The celiac tests don’t find it, and the biopsy doesn’t show it. They are not the same disease. The treatments are different.
2. YOU HAVE NON-CELIAC GLUTEN SENSITIVITY
Non-celiac gluten sensitivity (NCGS) is real. Some people get very sick eating gluten and they don’t have celiac disease. But, contrary to Internet lore, there is no scientifically proven way to diagnose NCGS with a lab test. NCGS can only be diagnosed through an elimination diet. First, you rule out celiac disease (“ruling out” or “excluding” means testing for it to confirm you do not have it). If the results are negative, you can eliminate all gluten from your diet, including sources of cross-contamination. If a gluten-free diet resolves your symptoms, you and your doctor may conclude you have non-celiac gluten sensitivity. NCGS is evolving into an “umbrella diagnosis” meaning it is syndrome that may be be caused by several different things such as fructose malabsorption or ATI intolerance.
Having a celiac test is the first step in appropriately diagnosing NCGS.
3. YOU LOVE YOUR CHILDREN
Celiac disease is genetic. If you have it, there is a chance your children have it or will develop it later. If you have celiac disease, but do not get it diagnosed and just assume it is non-celiac gluten sensitivity, your whole family can be impacted by this choice.
The family needs to know
It is recommended that all first-degree relatives (siblings, children, parents) of anyone diagnosed with celiac disease should be screened for celiac disease, whether or not they are aware of any symptoms. Symptomatic second-degree relatives (aunts, uncles, cousins, nieces and nephews) should also be screened. However, I know family screening doesn’t always automatically happen. You may need to initiate the discussion with your doctor.
Heads-up for the doctors
Children may have symptoms such as poor growth, behavior problems, headaches, or dozens of other possible symptoms that are not part of the “classic” celiac profile with which most doctors are familiar. If you have a formal diagnosis of celiac disease yourself, it should prompt the pediatrician to test your child for celiac disease as a possible cause of your child’s symptoms. If the doctor doesn’t suggest testing, you can request it. If you have started yourself on a gluten-free diet without testing, you have put yourself in the non-celiac gluten sensitivity category and your child’s doctor is much less likely to test your child for celiac disease.
Silent celiac disease
Even if your kids do not appear to have symptoms, they could have silent (asymptomatic) celiac disease. People with silent celiac disease are not aware of any symptoms, but damage is being done internally. The key to long-term health with celiac disease is early diagnosis and treatment.
If you don’t test yourself for your own sake, do it for your children’s sake.
4. YOU NEED TO KNOW HOW CAREFUL TO BE
Better safe than sorry
We know it only takes one speck of gluten to make a celiac patient sick. Whether they exhibit symptoms or not, the damage is happening. We DO know how careful people with celiac disease have to be with cross-contamination. We DON’T know how careful non-celiac gluten sensitivity patients need to be. In my experience, most gluten-sensitive patients are not as careful as celiac patients. Does the fact that they have NCGS allow them to be more liberal? Scientifically speaking, we just don’t know. At this point, I err on the side of caution and recommend that NCGS patients be just as careful as those with celiac disease.
Know your risk by getting diagnosed
What if you have celiac disease, but are not aware of it? Perhaps you think you are “just gluten sensitive” so you have a little here and there or are less careful about cross-contamination. Would these small amounts of gluten put you at risk for complications? If you have celiac disease, the answer is yes. Even if you do not have external symptoms from small amounts of gluten — some do not — the damage is happening and the increased health risks are stacking up.
5. YOU WANT TO SAVE MONEY
Save by getting a valid test
Insurance is more likely to pay for valid celiac testing than scientifically unproven gluten sensitivity testing. Save your health and your money by knowing the difference. Valid screening tests for adults are the blood tests tTG-IgA (tissue transglutaminase) and total serum IgA, done together. There currently is no scientific data supporting stool testing or gluten sensitivity testing. If an online lab is promising to diagnose gluten sensitivity, the test it is offering is not recommended as valid or medically useful by celiac experts such as Dr. Peter Green, Dr. Stefano Guandalini or Dr. Alessio Fasano, and it is unlikely to be reimbursed by insurance. Do the appropriate, valid celiac testing before starting a gluten-free diet and skip the “scientific-looking” lab websites offering unvalidated tests. If you have ruled out celiac disease, you can then eliminate gluten from your diet (for free!) and see if your symptoms resolve.
Save on health care
Health care is expensive. Wouldn’t you like to get more of it reimbursed? Insurance is more likely to pay for the portion of your health care related to celiac disease if you have a formal diagnosis. Currently, there is no insurance code for gluten sensitivity, so reimbursement is challenging at times.
Don’t buy gluten-free if you don’t need to
Gluten-free food is expensive. If you don’t need it, why buy it? I have seen many patients in my office on a gluten-free diet because someone told them to start it for whatever their particular ailment is. They haven’t noticed any changes in their health, yet they continue to follow the diet. Do they need to? If we rule out celiac disease, and they don’t have symptoms of gluten sensitivity, going back to a balanced gluten-containing whole food diet may be a huge help to their budget.
6. YOU DESERVE ACCOMODATIONS
Diagnosis is necessary for ADA accommodation
Given the recent settlement between Lesley University and the Department of Justice, schools may soon be legally required to accommodate students with documented food allergies and celiac disease in dormitories and cafeterias. A requirement to accommodate special dietary needs for these students will fall under the umbrella of the Americans with Disabilities Act. In order to obtain ADA accommodations, students will need signed documentation from a licensed physician stating they have a diagnosis of celiac disease or food allergies.
Get it done while you can
If your child has celiac disease, but no diagnosis, it is unlikely they will be eligible to receive accommodations. College may seem far away to those of us with babies and young children, but can you imagine any teen wanting to undertake a three-month “gluten challenge” in order to be tested for celiac disease? You can’t test for celiac disease if you have eliminated gluten before testing, unless you do a gluten challenge.
Gluten sensitivity not mentioned
There is currently no reference to gluten sensitivity being covered by the Americans with Disabilities Act. Unfortunately, NCGS may not be accommodated until there is a formal definition and accepted diagnostic test.
I hope I have convinced you to get celiac disease testing before starting a gluten-free diet or putting your child on one. It really is simple and inexpensive to do so. If you eliminate gluten before testing, it becomes very difficult to get an accurate diagnosis and in the long run may affect your pocketbook, your health and your family’s health.
PLEASE PRINT THE FOLLOWING ARTICLE ON CELIAC DISEASE VS. GLUTEN SENSITIVITY FOR YOUR HEALTH CARE PROVIDER. HELP EDUCATE OUR MEDICAL PROFESSIONALS.
My recent article in the Sonoma County Medicine Magazine was aimed at educating medical professionals on the topic of celiac disease vs. gluten sensitivity. It may be printed and taken to physicians or health care providers anywhere to assist in educating them on these topics.
Pritable Version: http://theceliacmd.com/wpcontent/uploads/2014/01/burkhart.pdf.
RECOMMENDED, RELIABLE, LINKS FOR CELIAC DISEASE AND GLUTEN SENSITIVITY INFORMATION:
Center for Celiac Research and Treatment at Massachussetts General Hospital
University of Chicago Celiac Disease Center
Beth Israel Deaconess Medical Center Celiac Center
THIS ARTICLE IS COPYRIGHTED BY AMY BURKHART, MD, RD.
Past columns by Dr. Burkhart:
November 2015: Cold Sores, Canker Sores and Gluten
July/August 2015: A New Home Test To Monitor Gluten Exposure
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
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
April 2014: Update on Restaurants and Gluten-Free Dining
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?
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
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?
Photo by www.michaelandersongallery.com
“I have been a patient of Dr. Amy Burkhart for several years. I suffer from Crohn’s disease and was having difficulty in my daily life. After visiting many doctors, all of whom were unable to help me, Dr. Burkhart took the time and patience to create a plan which brought me back to health. I still follow her plan to this day and have been living a normal healthy life. Dr. Burkhart listened to my symptoms along with listening to me, she took her time in preparing a plan which led me to the road for recovery. I cannot thank Dr. Burkhart enough, and I would recommend her to anyone.”