Amy Burkhart, MD, RD, is a board-certified emergency medicine physician and registered dietitian. She also trained in integrative medicine with Dr. Andrew Weil at the University of Arizona Center for Integrative Medicine. Her practice is located in Napa, CA.
1100 Lincoln Ave. Suite 200
Napa, CA 94558
(707) 927-5622 Office
WHY do you need to test for celiac disease?
WHY not just start a gluten-free diet?
WHY test if you are going to follow the diet anyway?
WHY does it matter?
A couple of years ago I wrote an article about the need to test for celiac disease before initiating a gluten-free diet. I’ve had very positive feedback from it and many notes of appreciation for clarifying the reasons why testing is necessary. Recently, however, I have been contacted by several people who are still being told by their physicians to initiate a gluten-free diet without testing first for celiac disease. This is such an important topic to me that I decided to update the article and further clarify the reasons why testing is necessary. I also wanted to discuss what may be in the future for people who have already initiated a gluten free diet.
I hope that the following six points clarify why appropriate testing for celiac disease is important before starting yourself or your child on a gluten-free diet. 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 actually have celiac disease
If you have celiac disease and stop eating gluten, what happens? You feel better! If you have non-celiac gluten sensitivity (NCGS) and 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 test results are invalid.
It is important to understand that celiac disease and NCGS are two different things. There is still a lot to be understood about NCGS but what is known is that it is not the same mechanism as celiac disease. NCGS may actually be more of an umbrella term for several different conditions such as ATI intolerance, FODMAP intolerance and reactions to other components of wheat. The celiac tests can’t diagnose NCGS, and the biopsy doesn’t show it. They are not the same disease. The diagnostic process is different and the treatments may be different.
2. You have non-celiac gluten sensitivity
Non-celiac gluten sensitivity (NCGS) is real. Some people get very sick from eating gluten and they don’t have celiac disease. There is currently no scientifically proven way to diagnose NCGS with a lab test. NCGS can only be diagnosed through an elimination diet. You must first test for celiac disease. 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.
You must then determine the reason for the NCGS. Do you need a low FODMAP diet? A wheat-free diet? You may not need a strict gluten-free diet. You may not have to worry about cross contamination. If the problem is a FODMAP intolerance, the diet is very different and cross contamination is not usually an issue. If you start with a strict gluten-free diet without testing, you are doing yourself a disservice. The long-term dietary implications may be similar or vastly different for celiac disease and NCGS.
Having a celiac test is the first step in appropriately diagnosing NCGS.
3. You love your children
Celiac disease is genetic
If you have celiac disease, 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 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 it, whether or not they are aware of any symptoms. Symptomatic second-degree relatives (aunts, uncles, cousins, nieces and nephews) should also be screened. At times, health care providers are not aware of the need to test family members. If you are diagnosed with celiac disease and family testing is not recommended, take the initiative and ask for your family to be tested.
A red flag for the doctors
Children with celiac disease may have symptoms such as poor growth, behavior problems, headaches, or dozens of other possible symptoms. Or, they may not have the classic celiac profile that leads most doctors to consider celiac disease. 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. Some people, including some physicians, unfortunately consider gluten sensitivity a fad. Your child’s doctor may be less inclined to test your child if you do not have a formal diagnosis.
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
Will a shared cooking surface make you ill?
It only takes one speck of gluten to make a celiac patient sick. Shared cooking surfaces, fryers, and cutting boards are enough to cause illness. Whether celiac patients exhibit symptoms or not, damage is happening if cross contamination occurs. People with celiac disease must pay close attention to this risk. We don’t know how careful non-celiac gluten sensitivity patients need to be. In my experience, most gluten-sensitive patients need not be as careful as celiac patients. If FODMAP intolerance is the cause of NCGS, small amounts of gluten or wheat do not typically trigger a reaction. At times, cross contamination does cause illness with NCGS, but in most cases it does not. Scientifically speaking, we don’t know what level of concern for cross contamination is needed in NCGS, but at present it appears not to be the small quantities that affect celiac patients. This is significant, especially in the social arena. Situations such as dining out, parties and college dormitory living would be approached differently.
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.
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.
Don’t buy gluten-free food if it’s unnecessary
Gluten-free food is expensive. 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 accommodations
Diagnosis is necessary for ADA accommodation
Following student complaints and a three-year investigation, the Department of Justice and Lesley University reached asettlement agreement in 2012 that Lesley University would fully accommodate students with celiac disease and food allergies in their dining services. As a result, all schools are under legal pressure to accommodate documented food allergies and celiac disease in dormitories and cafeterias. The Department of Justice indicated thatceliac disease and food allergies may constitute disabilities under the Americans with Disabilities Act. In order to obtain ADA accommodations, students generally need signed documentation by a licensed physician stating they have celiac disease or food allergies.
Test children 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” that makes them very ill 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 as widely as celiac disease until there is a formal definition and accepted diagnostic test.
If you have started a gluten-free diet without testing
Most people who have noticed improved health on a gluten-free diet are unwilling to reintroduce gluten for the purpose of celiac disease testing. The genetic screen for celiac disease, which can be done regardless of diet, can be used to eliminate the possibility of celiac disease; a negative result means you don’t have the genes for celiac disease. No gene means no celiac disease, ever. Unfortunately, the genetic test cannot diagnose celiac disease because many people carry the genes but will never have celiac disease (about a third of the population). A reintroduction of gluten is necessary to diagnose celiac disease. There is disagreement in how long gluten reintroduction needs to be for testing. It can be as long as three months. Tests are currently under investigation to allow for a shorter gluten challenge period. This may make diagnosis of celiac disease after initiation of a gluten-free diet much more feasible.
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 article in the Sonoma County Medicine Magazine is 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.
Printable Version: http://theceliacmd.com/wpcontent/uploads/2014/01/burkhart.pdf.
RECOMMENDED LINKS FOR CELIAC DISEASE AND GLUTEN SENSITIVITY:
Center for Celiac Research and Treatment at Massachusetts General Hospital
University of Chicago Celiac Disease Center
Beth Israel Deaconess Medical Center Celiac Center