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    In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease. In 1998 I founded The Gluten-Free Mall, Your Special Diet Superstore!, and I am the co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.

  • Related Articles

    Scott Adams
    Celiac disease is a permanent (lifelong) condition which affects genetically predisposed individuals who are exposed to gluten and related products from rye, barley and oats. Once the diagnosis has been confirmed there is absolutely no indication for periodically undertaking a gluten challenge. It is well known that patients with celiac disease who start ingesting gluten again after having been on a gluten free diet may go for years without apparently having any symptoms. Despite this there will be ongoing histological damage to the intestines. It was this apparent prolonged symptom free state that led doctors in the past to believe that people could grow out out of the condition. This is no longer accepted as correct.
    Dr. Ivor Dennis Hill left the University of Baltimore and is now in North Carolina. He is the Chief of the Division of Pediatric Gastroenterology and Nutrition, Bowman Gray School of Medicine, Winston-Salem. His new phone number is (910) 716 4431. As such he will be very involved in all aspects of Clinical Pediatric Gastroenterology. Dr. Hill has every intention of continuing his work with celiac disease and sees this as an opportunity to open another center of interest. Colleagues at Duke and Chapel Hill are keen to join Dr. Hill in a Pediatric Gastroenterology Group.

    Dr. Scot Lewey
    Ten Facts About Celiac Disease Genetic Testing
    Celiac.com 04/16/2019 (originally published 04/24/2008) - Genetic tests for celiac disease and gluten sensitivity are readily available. Testing can be performed on either blood and mouth swab samples. Tests can be done at home and mailed to the lab for analysis.
    A good testing laboratory will provide an accurate prediction of celiac disease risk, and will also provide information about the statistical risk to your children, your likelihood of developing more severe celiac disease, whether one or both of your parents had the risk gene, and for some laboratories, you may determine your risk of gluten sensitivity without celiac disease.
    DQ2 & DQ8 Not the Whole Story
    About 95% of celiacs carry HLA-DQ2; while about 25% carry HLA-DQ8. If any part of the high risk gene patterns DQ2 and DQ8 is missing, then the likelihood of that person getting celiac disease is 99.9% AGAINST. 
    Negative Genetic Test Only Part of the Story
    However, "negative celiac genetic testing” is not sufficient for entirely ruling out celiac disease. To definitively declare negative celiac genetic tests requires the laboratory to test for the presence or absence of the entire HLA DQ genetic pattern, including both alpha and beta subunits.
    The DQ genetic patterns DQ2 and DQ8 have two subunits, but many laboratories only test for the beta subunit. Few labs test for both. This DQ typing is complicated and difficult to understand even by physicians and scientists. I have written an updated detailed review that appears in the Spring 2008 issue of Scott-Free newsletter published by celiac.com.
    No DQ2 & DQ8 Can Still Mean Gluten Problems
    Data collected by Dr. Ken Fine of Enterolab supports the fact that the absence of DQ2 and DQ8 does not exclude the risk of being gluten intolerance or sensitive, though it is now looks likely that one or both of those genetic white blood cell patterns are required for celiac disease or celiac sprue to develop. 
    However, there is a new study that reports that being negative for DQ2 and DQ8 does not completely exclude the possibility of celiac disease, especially in men. 
    Previous studies have documented blood test negative celiac sprue, which is also more common in elderly men with long-standing severe disease. 
    Since DQ2 or DQ8 is almost universally present where tissue transglutaminase and anti-endomysial antibodies are present it is not surprising that individuals without DQ2 or DQ8 with negative blood tests are being reported that meet criteria for celiac disease.
    These new studies are also providing further information that the genetics of celiac is gender specific. If you are a man, your risk of celiac disease may be higher than a woman if you don't have the classic genetic patterns. Again, in this situation your blood tests may be negative. If you are a woman, the risk for Celiac disease is generally higher than a man, especially if you have received the at risk gene from your father instead of your mother.
    Celiac disease is arguably the most common autoimmune disease. It is very common. It is easily treated. It affects 1/100 people worldwide. However, most people with celiac disease (~90%) are unaware, undiagnosed or misdiagnosed. 
    Most adults finally diagnosed with celiac disease have suffered at least 10-11 years, and have seen 3 or more doctors. Genetic testing can be extremely helpful in determining your risk for celiac disease, potential severity, and risk for family members. Don't be one of those whose diagnosis is missed or needlessly delayed for over a decade. Get tested! Learn about the genetic tests for celiac disease and if necessary educate your doctor about this testing.
    Important Facts About Celiac Disease:
    Genetic Testing Can Determine Celiac Risk
    Celiac genetic tests can be done on blood or a mouth swab sample but your doctor may be unaware of the tests, not know how to order them, or know how to interpret the results.
    Diet Will Not Change Genetic Test Results
    Genetic testing is not affected by diet. You can be eating gluten or on a gluten-free diet. Unlike blood tests for celiac disease antibodies, which require a patient to be eating gluten, genetic tests can be done whether or not the person being tested is eating wheat or gluten. 
    Diagnostic Codes Can Help Secure Insurance Approval
    Many insurance companies pay for celiac genetic testing. Most that pay require pre-authorization. The following diagnostic codes are helpful when requesting insurance coverage: 579.0 (celiac disease); V18.59 (family history of GI disease); and/or V84.89 (genetic susceptibility to disease).
    Some Genetic Labs Perform Limited Tests
    Many laboratories do not perform the all of the necessary components of the test to completely exclude the possible genetic risk of celiac disease and most don't test for or report the other gluten sensitive DQ patterns. Before you accept that have a negative test you need to know if your test included both the alpha and beta subunits of HLA DQ or did they just perform the beta typing.
    Negative Results Can Still Mean Celiac in Rare Cases
    In rare cases, some people, especially men, may have a negative genetic test and still have celiac disease. As with blood tests, men more commonly have negative genetic tests, especially older men with long-standing severe disease.
    DQ Type Can Influence Celiac Risk and Severity
    Both the DQ type, and number of copies you have, matter when determining not only your risk, but also the possible severity of celiac disease. Two copies of DQ2 carries more risk than one copy of DQ8 or only partial DQ2. Even a single copy of DQ2 alpha subunit ("half DQ2 positive") carries risk for celiac disease, but most of the commonly used laboratories for Celiac genetics do not test for or report the presence of this component of the celiac genes.
    Negative DQ2 and DQ8 Can Still Mean Gluten Intolerance
    The absence of at risk genes DQ2 and/or DQ8 does not exclude the possibility of being gluten intolerant or sensitive. You may respond to a gluten free diet, even if you don't have DQ2 or DQ8, or true autoimmune celiac disease.
    No Prescription Needed for Genetic Celiac Testing
    You can get genetic testing without a doctor's order and the tests can be done without having blood drawn or insurance authorization if you are willing to pay between $99-300 (www.enterolab.com).
    Genetic Testing Labs for Celiac Disease
    Laboratories in the U.S. that are known to offer complete alpha and beta subunit genetic testing include Kimball Genetics, Prometheus, and LabCorp. Bonfils, Quest and Enterolab only test for the beta subunit portions and therefore their test can miss part of a minor alpha subunit that carries a risk of celiac disease. A negative DQ2 and DQ8 report from these labs may not necessarily be truly negative for the risk of celiac disease.
    Celiac Genetic Testing References and Resources:
    HLA-DQ and Susceptibility to Celiac Disease: Evidence for Gender Differences and Parent-of-Origin Effects. Megiorni F et al. Am Journal Gastroenterol. 2008;103:997-1003. Celiac Genetics. Dr. Scot Lewey. Scott-Free, Spring 2008.  

    Jennifer Arrington
    I would hate to add up all the hundreds of dollars I have wasted trying to get healthy.  Now, however, I get healthy by focusing on one thing:  making my intestines healthy.  If my intestines are healthy, I can absorb food.  If I can absorb food, my body will be receiving the nutrition it needs to function, and thus I will be healthy.
    Of course, rule number one for all of us is to stay gluten free.  But, focusing on avoidance alone, can get depressing.  Instead, I like to focus on what I can do to strengthen my digestive system.  That way, all the good gluten free food I am consuming can actually benefit my body.  What good is eating healthy if you are unable to absorb the nutrients?  Pouring healthy food into a compromised gut would be as wasteful as pouring dollar bills over an ATM machine and hoping in vain to strengthen your bank account balance.
    Research shows that those of us with celiac disease/gluten intolerance often have decreased absorption despite following a strict gluten free diet.  Scott Adams summarized one of these articles on the celiac.com website back in 2003.  The article by Lee SK, et al. entitled “Duodenal Histology in Patients with Celiac Disease after Treatment with a Gluten-free Diet” implied that even though patients may feel better on a gluten-free diet, there may still be damaged intestinal areas that are incapable of optimal nutrient absorption.  Since specific nutrients are absorbed along specific locations in the small intestine, this can have long-term ramifications.  For instance, the proximal portion of the intestine is the site for absorption of vitamin B6 (pyroxidine).  If that portion is damaged, there will be decreased absorption, and your body will be deficient in B6.  You may then experience a range of neurological symptoms such as nervousness, irritability, and shakiness.  And, as happened in my case, you may see a doctor, only to be told you are having anxiety attacks and be handed a prescription for a mild tranquilizer.  Thankfully, I discovered that a good B6 supplement (Solgar “Magnesium with B6”) was all I needed and threw away the offending prescription, but this serves as an excellent—albeit oversimplified—example as to why we have to focus on improving the health of our intestines.
    Before I go on, I do want to say that the products listed below do not benefit me financially in the least.  Additionally, these are the products that work best for my body.  You may find a different brand works better for you, but as long as our focus is on getting those intestines healthy, we are all heading in the right direction!
    So, read on about what I personally consider the top four intestinal healing supplements…
    The first and best all-round product I have found that truly aids in restoring the intestinal lining is a glutamine supplement put out by a company called Metagenics.  The supplement, called “Glutagenics”, contains glutamine, licorice root, and aloe vera.  While studying for my masters in nutrition at Texas A&M University, we learned that glutamine is a key amino acid that aids in restoring the intestinal lining in patients that are transitioning from being tube-fed to a normal diet.   So, when my own chiropractor suggested this supplement and mentioned it contained glutamine, I purchased it and have been taking it on and off for three years.  
    Glutagenics is available online through various websites that carry the Metagenics brand. The supplement is unfortunately a bit cost prohibitive, but you can shop around for other brands that contain a similar blend, or buy the three active ingredients separately. Unfortunately, this did not work for me (I have an expensive gut), but it may for you.
    The next product is a good omega-3 fatty acid. Omega-3 fatty acids have so many benefits that even if you weren’t working on building up your intestines, they would still be beneficial. During my graduate research, I was fortunate to be part of an ongoing study on the mechanism whereby omega-3 fatty acids reduce the inflammatory response. Obviously, when our intestines are damaged, there is plenty of inflammation. So, including omega-3 fatty acids in our diet is vital.
    Thankfully, omega-3 fatty acids are getting easier and easier to come by. My family eats the high omega-3 brand eggs and the Smart Balance peanut butter and butter spreads. You can also purchase wonderful oil blends by Nordic Naturals. My favorite is the lemon-flavored Omega-3 liquid. The lemon flavor truly masks the fishy taste and even my children swallow the oil with minimal grumbling. Nordic Naturals is quite expensive (around $20.00 for 8 oz) but if you compare the amount of DHA you are getting per serving, it is definitely the most DHA for your dollar!
    Another great healing nutrient is zinc. Zinc is wonderful for wound healing- you’ll see it in many topical creams, but it also helps restore the intestines. Metagenics puts out a great supplement and their products are great for sensitive individuals. I find that 10mg works best for me. I don’t take it every day – too much will give you a bad taste in your mouth. Once I get that bad taste, I know I need to go off it for awhile.
    Finally (for now), find a great probiotic. The one that everyone recommends, by Garden of Life, contains wheat grass, so we have to avoid it. I do extremely well, however, on a product called Lacidophil by Xymogen. My energy levels actually improve on this brand. Xymogen has their own website where you can purchase products directly. Taking a good probiotic restores a healthy balance to your gut flora, which aids in overall health and digestion. I have just recently ordered one from Emerson Ecologics through a natural doctor and it’s supposed to be even better. It has many more strains of the good bacteria so I’m going to try it as soon as it comes in.
    Of the four products listed above, the two that I take daily are the probiotic and omega-3 oil. The other two I take on an ‘as-I-need-it’ basis.
    Unfortunately, our bodies don’t tolerate a lot of extra supplements, so go slowly and only add one at a time. Keep track of how you feel. You may never tolerate the mass quantities that some companies will try to sell you. But, since you are your own best manager, work with yourself slowly and patiently and you will find your health improves over time.
    May God bless you with the wisdom and discernment you need to live a healthy and vibrant life!


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