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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.

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    Scott Adams
    The traditional approach to diagnosing celiac disease is a three-step process:
    Perform a biopsy of the lining of the small intestine. This is a surprisingly easy procedure which takes only a few minutes, although small children are usually sedated first, which adds to the cost and complexity of the biopsy. If the villi are damaged (flattened or atrophied mucosa), go to step 2. Place the patient on a gluten-free diet for six months or longer and then perform another biopsy. If the villi are healed, go to step 3. Put gluten back in the diet for six months or longer, and then perform a third biopsy. If the villi are again damaged, then the diagnosis is complete. At this point, the patient goes on a gluten-free diet for life. Many doctors now feel that step number three is unnecessary, and some feel that even the second biopsy may be unnecessary. Part of the reason for this change in thinking is the development of three useful antibody blood tests: endomysial, reticulin (IgA), and gliadin (IgG and IgA). If the patient has been eating gluten regularly and all three tests come back positive, there is a very high chance that the patient has celiac disease. If all three tests come back negative, then it is very likely that the patient does not have celiac disease. Mixed results, which often occur, are inconclusive.
    All of the laboratory tests that can be performed are strongly affected by a gluten-free diet. Tests will return negatives if the individual has been on a gluten-free diet for some time, and there is much debate about the length of time a patient must return to a gluten-laden diet before being tested. It probably depends on many factors: the level of damage that was done before starting a gluten-free diet, the length of time the person has been gluten-free, the amount of healing that has occurred, and the sensitivity of the individual to gluten.
    A tentative diagnosis of celiac sprue is usually offered if the patients symptoms clear up after some time on a gluten-free diet. This is often followed by a "challenge" in which one of the offending grains (usually wheat) is eaten to see if the symptoms reoccur. However, this approach is much less desirable than having a firm diagnosis from a combination of antibody tests and one or more biopsies.
    Because a gluten-free diet precludes accurate testing, if you suspect celiac disease, it is advisable to have diagnostic tests performed before starting a gluten-free diet.
    Some physicians will accept positive antibody tests, one biopsy, and improvement on a gluten-free diet as sufficient for diagnosing celiac disease. Many other doctors prefer to perform a second biopsy, feeling that if it shows normal villi after a period of eating gluten-free then the diagnosis is confirmed. There are still some doctors who prefer the three-step approach mentioned above, though most view this as unnecessary.

    Scott Adams
    No. Celiac sprue is not a well-researched disease. Most of what we know about foods that are safe and foods that are not is gathered from anecdotal evidence provided by celiacs themselves. There is a great deal of controversy about what affects celiacs and what doesnt.
    Take, for example, buckwheat. Along with corn and rice, this is one of only three common grains left on the "safe" list for celiacs. However, some celiac societies have put it on the "unsafe" list and there is anecdotal evidence that some individuals react to it as they do to wheat. Yet a well-known specialist in grain research points out that buckwheat is more closely related to rhubarb than to the toxic grains, so if buckwheat is unsafe then any plant might be unsafe.
    In considering anecdotal evidence for whether a food is safe or not, individuals must make their own choices, but each of us should clearly understand that anecdotal evidence is gathered from individuals with widely varied experience.
    It could be that the "buckwheat flour" that a celiac reacted to was actually one of those mixes that combines buckwheat flour with wheat flour. Another possibility is that, since buckwheat and wheat are often grown in the same fields in alternating years, the "pure buckwheat flour" may have been contaminated from the start by wheat grains gathered at harvest. Yet another explanation might be that the buckwheat was milled in a run that was preceded by wheat or any of the other toxic grains, so the flour was contaminated at the mill. Finally, some individuals -- celiacs or not -- may have celiac-like reactions to buckwheat; they are allergic. Celiacs who are allergic to buckwheat may be easily fooled into believing they are having a gluten reaction. Or, it could be that some evolutionary trick has put a toxic peptide chain into buckwheat despite its distant relation to the other grains, but the odds against this happening are long.
    As individual celiacs learn to live gluten-free, they must gauge their own reactions to foods, do lots of research, ask questions, and try to understand the many variables that may affect the ingredients in their food.
    The following is a list of ingredients which some celiacs believe are harmful, others feel are safe:
    Alcohol Grain alcohol Grain vinegars White vinegar Vanilla extract and other flavorings (may contain alcohol) Amaranth Millet Buckwheat Quinoa Teff   Wheat starch is used in the some countries gluten-free diet because of the belief that it contains only a trace or no gluten and that good baked products cannot be made without it. In a laboratory, wheat starch purity can be easily controlled, but in most plants this is not always the case. Wheat starch is not considered safe for celiacs in these countries: United States, Canada, Italy.
    For more information on this topic visit our Safe & Forbidden Lists.

    Scott Adams
    Wine, rum, tequila, and sake are usually safe as their alcohols do not generally come from toxic grains. Some vodkas are also okay. However, as with any other ingested product, you should gauge your reaction and learn as much about your favored brands as possible.
    Grain alcohols are one of those controversial items, but recent ADA guidelines indicate that all 100% distilled spirits are safe, including Whiskey, bourbon and gin. Regular beers, must be avoided, since malt (usually from barley) is an ingredient. Even rice beers use malt, but there are a handful of gluten-free beers on the market today.

    Scott Adams
    The following labs have excellent reputations for such tests:
    Specialty Labs
    2211 Michigan Ave.
    Santa Monica California 90404
    Tel: 310 828-6543 or 800 421-4449
    Internet: http://www.specialtylabs.com
    The University of Maryland at Baltimore
    Attention: Karoly Horvath, MD, or Athba Hammed, Research Assistant
    School of Medicine
    Division of Pediatric Gastroenterology and Nutrition Laboratory
    UMAB/Bressler Research Building, Room 10-047
    655 West Baltimore Street
    Baltimore, MD, 21201
    410 706-1997 or fax at 410 328-1072
    University of Iowa Foundation for Celiac Disease Research
    University of Iowa Hospitals and Clinics
    200 Hawkins Drive
    Iowa City, IA 52242
    IMMCO Diagnostics, Inc.
    Vijay Kumar, Ph.D.
    IMMCO Diagnostics 
    60 Pineview Drive 
    W. Amherst, NY 14228
    Tel: (716) 691-0091 
    Toll Free Tel: (800) 537-TEST
    E-mail: IMMTEST@AOL.COM
    Immunopathology Laboratory
    Dept. of Pathology
    5233 RCP
    University of Iowa Hospitals and Clinics
    200 Hawkins Drive
    Iowa City, IA 52242
    Tel: (319) 356-2688
    Mayo Clinic
    Dr. Joeseph Murray
    Internet: http://www.mayohealth.org/mayo/common/htm/index.htm
     
    Prometheus, Inc.
    5739 Pacific Center Boulevard
    San Diego, California 92121
    Tel: (619) 824-0895
    Toll Free (888) 423-5227
    Fax: (619) 824-0896

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