Celiac Frequently Asked Questions (FAQ)

Table of Contents

This FAQ has been designed to be a general information resource. It is not intended for use in diagnosis, treatment, or any other medical application. Questions should be directed to your personal physician. This is no warranty on this information and no liability is assumed by the author or any group for the recommendations, information, dietary suggestions, menus, and recipes promulgated. Products mentioned or omitted do not constitute endorsement.

This discussion list is international in scope. Keep in mind that products and procedures often differ between countries. In future updates, some of these differences may be highlighted.

  • What is celiac disease?
  • What is dermatitis herpetiformis? What does it have to do with celiac disease?
  • What are the effects of celiac disease?
  • How is celiac disease diagnosed?
  • What are the symptoms of celiac disease?
  • What is the treatment for celiac disease?
  • What is gluten? What is gliadin?
  • Which grains are safe, which are not?
  • Is all this stuff certified to be safe?
  • This sounds like a complex diet. How do I get started?
  • What items on ingredients lists should I avoid?
  • What is available to help me cope with this new diet?
  • Where can I find a support group?
  • What are some good sources of gluten-free products?
  • What's the best bread machine for the celiac's use?
  • What cookbooks are available, and how do I get one?
  • I've been on a gluten-free diet and have still not improved. (Or, I was feeling well, but the symptoms are back.) What am I doing wrong?
  • I'm feeling better (or I never had obvious symptoms). How can I tell if I'm gluten-free?
  • After years of having diarrhea, now I'm constipated. Help!
  • How can I survive restaurants, parties, travel and entertaining?
  • Which alcoholic beverages are safe?
  • Is celiac disease ever mistaken for other diseases
  • Are there other diseases related to celiac disease?
  • Discussions on the amount of gluten in foods.
  • How can I get more information?
  • Thanks for work on this FAQ:
    | Feedback to the Listowners,  | Disclaimer,  |Copyright © | Updated 20 September 2004|
    | Return to the Basic Information page. | Return to the FAQ. | Return to the Celiac WWW page. |
    |Search the logfiles.|

    What is celiac disease?

    Celiac disease (also called coeliac, nontropical sprue, celiac sprue, gluten intolerant enteropathy, or gluten sensitive enteropathy) is a condition in which there is a chronic reaction to certain protein chains, commonly referred to as glutens, found in some cereal grains. This reaction causes destruction of the villi in the small intestine, with resulting malabsorption of nutrients.

    There is clear evidence of a family tendency toward celiac disease. 5-10 percent of the first-level relatives (parents, children, and celiacs) of diagnosed celiacs may develop celiac disease. The disease affects both sexes, and it can begin at any age, from infancy (as soon as cereal grains are introduced) to later life (even though the individual has consumed cereal grains all along). The onset of the disease seems to require two components: genetic predisposition (two specific genetic markers, called HLA subfactors, are present in well over 90 percent of all celiacs in America), and some kind of trigger. The trigger may be environmental (as in overexposure to wheat), situational (perhaps severe emotional stress), physical (such as a pregnancy, an operation), or pathological (a viral infection).

    Once thought to be a childhood disease that would be outgrown, recent evidence indicates that it is not uncommon for the symptoms of celiac disease to disappear during late childhood or adolescence, giving the appearance of a cure. Unfortunately, damage still occurs during these years of apparent health, and later in life these celiacs may find they have suffered considerable damage to the small intestine, and have for years deprived themselves of important nutrients.

    Return to the Table of Contents

    What is dermatitis herpetiformis? What does it have to do with celiac disease?

    Dermatitis herpetiformis (DH) is a severely itchy skin condition that often starts abruptly, affecting the elbows, knees, buttocks, scalp, and back. It usually starts as little bumps that can become tiny blisters and then are usually scratched off. DH can occur in only one spot, but more often appears in several areas.

    The condition is related to IgA deposits under the skin. These occur as a result of ingesting gluten. These deposits take a long time to clear up, even when the patient is on a gluten-free diet.

    While most individuals with DH do not have obvious GI symptoms, almost all have some damage in their intestine. They have the potential for all of the nutritional complications of celiac disease. It is believed by some GI professionals that most DH patients do indeed have celiac disease.

    It is unusual to develop DH after a celiac patient starts a gluten-free diet. About 5 percent of celiac patients will develop DH, either before being diagnosed or within the first year on the diet. The fact that DH can develop even after starting the diet is probably due to the long lasting nature of the IgA deposits.

    Return to the Table of Contents

    What are the effects of celiac disease?

    Untreated celiac disease can be life-threatening.

    Celiacs are more likely to be afflicted with problems relating to malabsorption, including osteoporosis, tooth enamel defects, central and peripheral nervous system disease, pancreatic disease, internal hemorrhaging, organ disorders (gall bladder, liver, and spleen), and gynecological disorders (like amenorrhea and spontaneous abortions). Fertility may also be affected. Some researchers are convinced that gluten intolerance, whether or not it results in full-blown celiac disease, can impact mental functioning in some individuals and cause or aggravate autism, Asperger's syndrome, attention deficit disorder (ADD), and schizophrenia. Some of the damage may be healed or partially repaired after time on a gluten-free diet (for example, problems with infertility may be reversed).

    Celiacs who do not maintain a gluten-free diet also stand a much greater chance of getting certain types of cancer, especially intestinal lymphoma.

    Untreated celiac disease can cause temporary lactose intolerance. Lactose is a sugar found in dairy products. To be digested it must be broken down by an enzyme called lactase. Lactase is produced on the tips of the villi in the small intestine. Since gluten damages the villi, it is common for untreated celiacs to have problems with milk and milk products. (Yogurt and cheese are less problematic since the cultures in them break down the lactose). A gluten-free diet will usually eliminate lactose intolerance. However, a number of adults (both celiacs and non-celiacs) are lactose intolerant even with a healthy small intestine; in that case a gluten-free diet will not elminate lactose intolerance.

    Celiacs often suffer from other food sensitivities. These may respond to a gluten-free diet--or they may not. Soy and MSG are examples of food products that many celiacs have trouble with. However, it should be noted that these other sensitivities, while troublesome, do not damage the villi. As far as we know, only gluten causes this damage.

    Return to the Table of Contents

    How is celiac disease diagnosed?

    The traditional approach to diagnosing celiac disease is a three-step process:

      1. 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.

      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.

      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 patient's 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.

    Return to the Table of Contents

    What are the symptoms of celiac disease?

    There is no typical celiac. Individuals range from having no symptoms (asymptomatic or "latent" forms of the disease) to extreme cases where patients present to their physicians with gas, bloating, diarrhea, and weight loss due to malabsorption.

    In between these two extremes lie a wide variety of symptoms that include:

      o diarrhea
      o constipation
      o steatorrhea (fatty stools that float rather than sink)
      o abdominal pain
      o excessive gas
      o any problem associated with vitamin deficiencies
        + iron deficiency (anemia)
        + chronic fatigue
        + weakness
        + weight loss
        + bone pain
        + easily fractured bones
        + abnormal or impaired skin sensation (paresthesia), including burning, prickling, itching or tingling
        + edema

    Individuals have reported such varied symptoms as:

      o white flecks on the fingernails
      o fuzzy-mindedness after gluten ingestion
      o burning sensations in the throat

    In children, the symptoms may include:

      o failure to thrive
      o paleness
      o querulousness, irritability
      o inability to concentrate
      o wasted buttocks
      o pot belly with or without painful bloating
      o pale, malodorous, bulky stools
      o frequent, foamy diarrhea

    In addition to all of these, dermatitis herpetiformis, a disease in which severe rashes appear (often on the head, elbows, knees and buttocks) is related to celiac disease.

    Reactions to ingestion of gluten can be immediate, or delayed for weeks or even months.

    The amazing thing about celiac disease is that no two individuals who have it seem to have the same set of symptoms or reactions. A person might have several of the symptoms listed above, a few of them, one, or none. There are even cases in which obesity turned out to be a symptom of celiac disease.

    Return to the Table of Contents

    What is the treatment for celiac disease?

    There is no prescriptive drug celiacs can take to effect a cure. In fact, there is no cure, though there is every opportunity for celiacs to lead normal, healthy lives by following a diet that contains no gluten. This means avoiding all products derived from wheat, rye, barley, oats, and a few other lesser-known grains.

    Extra vitamins may be taken, if necessary, but the only way for a celiac to avoid damage to their intestinal villi and the associated symptoms, is by maintaining a gluten-free diet.

    Return to the Table of Contents

    What is gluten?
    What is gliadin?

    Traditionally, gluten is defined as a cohesive, elastic protein that is left behind after starch is washed away from a wheat flour dough. Only wheat is considered to have true gluten. Gluten is actually made up of many different proteins.

    There are two main groups of proteins in gluten, called the gliadins and the glutenins. Upon digestion, the gluten proteins break down into smaller units, called peptides (also, polypeptides or peptide chains) that are made up of strings of amino acids--almost like beads on a string. The parent proteins have polypeptide chains that include hundreds of amino acids. One particular peptide has been shown to be harmful to celiac patients when instilled directly into the small intestine of several patients. This peptide includes 19 amino acids strung together in a specific sequence. Although the likelihood that this particular peptide is harmful is strong, other peptides may be harmful, as well, including some derived from the glutenin fraction.

    It is certain that there are polypeptide chains in rye and barley proteins that are similar to the ones found in wheat. Oat proteins have similar, but slightly different polypeptide chains and may or may not be harmful to celiac patients. There is scientific evidence supporting both possibilities.

    When celiac patients talk about "gluten-free" or a "gluten-free diet," they are actually talking about food or a diet free of the harmful peptides from wheat, rye, barley, and (possibly) oats. This means eliminating virtually all foods made from these grains (e. g., food starch when it is prepared from wheat, and malt when it comes from barley) regardless of whether these foods contain gluten in the very strict sense. Thus, "gluten-free" has become shorthand for "foods that don't harm celiacs."

    In recent years, especially among non-celiacs, the term gluten has been stretched to include corn proteins (corn gluten) -- and there is a glutinous rice, although in the latter case, glutinous refers to the stickiness of the rice rather than to its containing gluten. As far as we know, neither corn nor glutinous rice cause any harm to celiacs.

    Return to the Table of Contents

    Which grains are safe, which are not?

    The common list of forbidden grains is: wheat, rye, barley and oats.

    Unfortunately, there are variants out there that go by other names. Durum and semolina are names for certain kinds of wheat that have been bred for specific uses. Both spelt and kamut are versions of wheat. (Other names for these: spelta, Polish wheat, einkorn and small spelt). Bulgur is wheat that's been specially processed. Triticale, a grain crossbred from wheat and rye, is definitely on the toxic list.

    Though corn (maize) is one of those grains that many people -- not just celiacs -- may be allergic to, it is not a grain that is thought to cause damage to the villi in celiacs. It is tolerated by most celiacs.

    Of the common grains, rice is the favorite as it rarely troubles anyone.

    Aside from corn and rice, there is a wide variety of other grains that are used in gluten-free cooking. We even use beans and peas (legumes, pulses).

    The following can be milled into flour: amaranth*, buckwheat* (or kasha), chickpeas (garbanzos), Job's tears (Hato Mugi, Juno's Tears, River Grain), lentils, millet*, peas, quinoa*, ragi, sorghum, soy, tapioca, teff*, and wild rice. Many of these flours are available in health food stores. Some (like rice flour) may be available in grocery stores. (The products marked with an "*" are listed as grains to avoid by some physicians and celiac societies. See the discussion below about anectodal evidence and possible contamination of flours for more information.)

    To improve the texture of gluten-free baked goods, most cooks use one or more of the following: xanthan gum, guar gum (though this sometimes has a laxative effect), methylcellulose, or a new product called Clear Gel. These can be obtained either through health food stores, specialty cook's stores, or some of the mail order sources listed below.

    Oils popular in cooking include: corn, peanut, olive, rapeseed (canola), safflower, soy, and sunflower.

    Additional information is available in: Grain Toxicity

    Return to the Table of Contents

    Is all this stuff certified to be safe?

    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 doesn't.

    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.

    Return to the Table of Contents

    This sounds like a complex diet.
    How do I get started?

    Learning the celiac diet is a lot like learning to drive a car. At first there's so much to look out for, so many things to remember, that you feel a bit overwhelmed and, perhaps, as though you'll never get the hang of it. But just like driving a car, with practice it gets easier and easier until it become almost automatic. (And, like driving a car, you should never allow yourself to become too complacent, because it's when you start taking everything for granted that accidents happen.)

    The best way to start the diet is begin with items that have no ingredients list: whole foods. Cook your own meats, make omelettes, have potatoes, eat fruit and vegetables, drink 100 percent juice drinks and water. This allows you to be sure that everything you are ingesting is gluten free by concentrating on things other than bread and pasta substitutes. If you're taking medications, check on those.

    When you begin feeling better, start adding in your favorite prepared foods, and buying substitutes for things that are gluten-laden, or making your own. Take it slowly so that you don't feel overwhelmed and can pay attention to each item you add to your safe-list.

    Return to the Table of Contents

    What items on ingredients lists should I avoid?

    Following is a list of things that are considered unsafe for obvious reasons; they all contain one of the forbidden grains as a standard ingredient (though even on this list there are exceptions, like gluten-free bread and some macaroon cookies which may be made without wheat flour):

    Be very sure to read all labels. Such common prepared food as cereals, ice cream, soups, yogurt, snack foods and processed meats (like lunch meats and sausages) may contain any of the above ingredients.

    Seemingly innocent ingredients like "tomato paste" are suspect, too, because ingredients of ingredients are not required to be broken down. Some tomato paste may contain HVP, but when you see "tomato paste" in that jar of spaghetti sauce, it may be safe, or it may not. (Also check any cans of tomato paste you buy; if it says "100 percent tomatoes" it should be safe, but, surprisingly, many contain other ingredients).

    It is a good idea to recheck labels at regular intervals. Ingredients may change at any time. For example, at one time Pringles Potato Chips were gluten-free. However, in the past year the ingredients changed to include wheat starch. Also, in some products the ingredients may vary from one batch to another. For example, Archway macaroons are sometimes made with potato starch, and sometimes with wheat starch. So, depending on which package you happen to buy, they may or may not be gluten free.

    Any of the following may have wheat, rye, barley or oats as an ingredient. On some items wheat flour may be what we call a "hidden ingredient." This could be because conveyor belts are dusted with wheat flour, or wheat flour is mixed in to aid in pouring finely ground spices ("anti-caking agents"). (Food manufacturers are not required to list items used in "packaging" so be careful.) "Nebulous ingredients" are those with catchall names (like "modified food starch") that can be manufactured from a variety of sources, some of which are toxic, some of which are not.

    Look at the ingredients list and check with the manufacturer:

    * In the U.S. "starch" is safe as it should always be corn starch; in other countries it may be wheat starch. "Food starch" and "modified food starch" may be either corn or wheat, in the U.S. and elsewhere.

    The following is a list of ingredients which some celiacs believe are harmful, others feel are safe:

    In 2001, many US Celiac started allowing most vinegar in their diet. A good discussion on the pro and cons of vinegar was submitted by the Gluten-Free Living as: Are All Vinegars Safe for Celiacs?

    Wheat starch is used in the some countries' GF 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.

    Please keep in mind that we make no promises that these lists are complete.

    Two additional pages may be of help in understanding the major ingredients that should be avoided is available in these WWW pages.

      Grain Toxicity
      Gluten Free Diet
    In some countries, the national celiac support group will prepare a comprehensive booklet of products allowed on the GF diet. In the US, two booklets have been prepared by these groups at different times of the year based upon information supplied by the.

    CSA/USATCCSG Shopping guide
    PO Box 3170047819 Vistas Circle
    Omaha, NE 68131-0700Canton MI. 48188
    Cost $20.00Cost $12.00
    Last update Oct 03Last update Nov 03
    Tollfree 877-272-4272
    Email: celiacs@csaceliacs.orgtccssg@yahoo.com
    www, http://csaceliacs.orgwww.tccsg.com

    Return to the Table of Contents

    What is available to help me cope with this new diet?

    There are many resources available to the newly diagnosed celiac. These include cook books, mail order sources and support groups.

    One of the most common early purchases for celiacs is a bread machine, since bread is usually the first prepared food to be missed. The new breed of machines makes turning out bread very simple, and there are good recipes available, as well as some excellent gluten-free bread mixes. Before purchasing a bread machine, ask questions about it's suitability for preparing GF breads and the availability of GF bread recipes. Some machines are excellent and perform error free, while others will not bake a GF loaf or require manual intervention.

    A heavy duty mixer is often required for handling the GF flours. Depending on your cooking style, it may be an item to consider after preparing several GF baked items.

    Other kitchen equipment that comes in handy: a bread slicer, a big freezer, a grain mill, a pasta machine, even an ice cream maker or yogurt maker.

    Return to the Table of Contents

    Where can I find a support group?

    Write, email, or call one of the following and ask for information on local support groups and the benefits of national membership:

    American Celiac Society (ACS)
    59 Crystal Ave
    West Orange, NJ 07052
    973 325-8837

    Canadian Celiac Society
    WWW
    190 Britannia Rd. E. Unit #11
    Mississauga, ON L4Z 1W6
    (800) 363-7296 (inside Canada only)
    (905) 507-6208, (905) 507-4673 (fax)

    Celiac Disease Foundation (Los Angeles)
    13251 Ventura Boulevard, Suite 3
    Studio City, CA 91604
    818/990-2354

    Celiac Sprue Association/USA (CSA/USA)
    WWW
    PO Box 31700
    Omaha, NE 68131
    402/558-0600

    Gluten Intolerance Group of North America (GIG)
    15110 - 10 Ave SW, Suite A
    WWW.gluten.net
    Seattle WA 98166-1820
    Phone: 206-246-6652, Fax: 206-246-6531

    Additional information on national or local support groups is available from this sites's support group pages. Click on the desired area to obtain a sub list of groups.

      Celiac Support Groups in the United States
      Celiac Support Groups in Australia
      Celiac Support Groups in Canada
      Celiac Support Groups in Finland
      Celiac Support Groups in Italy
      Celiac Support Groups in other countries

    Return to the Table of Contents

    What are some good sources of gluten-free products?

    Try any of the following -- or all of them! Have them send a catalog or list, and check it out for your self! Keep in mind that many of these companies sell products that are not gluten-free as well as products that are gluten-free.

    A comprehensive listing of vendors is available from this sites's vendors page.

    The complete listing of GF vendors can also be found in the NEWCEL PACKAGE that is available from this LISTSERV. For more information, see the section entitled, "How can I get more information?"

    Return to the Table of Contents

    What's the best bread machine for the celiac's use?

    Most bread machines can be made to work; it's simply a matter of getting to know your machine and trying it out. Features that are recommended for gluten-free breads are: programmability, a strong paddle, and a cool-down cycle.

    The Welbilt ABM-100 was the old standby, but it is no longer being manufactured. Welbilt stands by all their models as being suitable for gluten-free breadmaking, however, the ABM 150-R and the 2200T seem to have more of the preferred features. Also the Sears model 69623 is made by Welbilt, and is equivalent to the ABM 150-R.

    Some of the bread machines currently being sold by Sears as their own brand are actually made by Welbilt. The larger model is recommended (the one with the clear dome) since most of the recipes are for larger loaves of bread.

    Another popular make (but expensive, the Cadillac of bread machines) is the Zojirushi BBCCS-15. It is extremely versatile and programmable.

    Another model that subscribers to the list own and are pleased with is the Black & Decker All-in-One (Model B1500-04).

    Return to the Table of Contents

    What cookbooks are available, and how do I get one?

    The Gluten-Free Gourmet, by Bette Hagman (wide range: breads, cookies, pasta, with an emphasis on fancy stuff).

    More from The Gluten-Free Gourmet, by Bette Hagman (an excellent section on bread machines and recipes for them, and more wide ranging recipes)

    You might want to look in your local library first. They probably have at least a few good books there, and you can get an idea of which you'll like best. (Don't forget inter-library loans, too, if your branch does not carry the ones you want.)

    To buy these cookbooks, try checking your local bookstore's "special diet" section of the cookbook shelves; you may be surprised to find copies there. Also, check health food stores. Many can be ordered through your local bookstore if you can't find them already on the shelf. Finally, many of the mail-order sources for celiacs also sell cookbooks.

    Several of the celiac support organizations listed earlier have cookbooks. Also, some of the larger local support groups have cookbooks they have compiled.

    A comprehensive list of cookbooks is available.

    Return to the Table of Contents

    I've been on a gluten-free diet and have still not improved.
    (Or, I was feeling well, but the symptoms are back.) What am I doing wrong?

    Many newly diagnosed celiacs are told that the diet is simple: just remove wheat, barley, rye and oats. Well, it sounds easy, doesn't it? If those who hand us this advice haven't tried it themselves, they are unlikely to realize how prevalent these things are in the modern diet. Some physicians may not be aware that, not only does gluten hide in the ingredients list of many products under the obscure names listed previously, it may even be a component of some of the drugs they prescribe.

    It is up to celiacs themselves to research everything that goes into their mouths.

    Don't get complacent, either. If you're not feeling well, or if you were feeling well but suddenly find symptoms recurring, recheck labels. Food manufacturers often change their ingredients, and they are not required to put BIG ANNOUNCEMENTS on the can to let you know they've suddenly started including gluten in a product you've grown to trust.

    There are many ways that celiacs commonly get gluten -- some seem obvious (once they've been pointed out!), others are pretty obscure.

    Check the following:

    Also be aware that you may get gluten in:

    If you've done everything you can and still are having symptoms, check with your doctor. The IgA reticulin antibody test can be used to check for reactions to gluten ingestion. If the test comes back negative, it indicates that you are probably not ingesting gluten any more, and the physician should check for other problems that may be causing your continuing illness.

    Another possibility is that the disease has entered what's called the refractory phase, in which problems with malabsorption continue despite strict adherence to a gluten-free diet. (Note: This is very unusual; an unsuspected source of gluten is much more likely to be the problem.) With your doctor's advice you might consider enzyme supplements which would help with digestion, or check for pancreatic problems, or lymphoma bacterial overgrowth.

    Also consider the possibility that you may have other food intolerances. Remember that lactose intolerance is very common among all people. Other foods may also cause problems -- eggs, soy, and corn have a high incidence of problems -- so watch your diet and try to determine whether your reaction is tied to a specific food or ingredient. (Keeping a dietary log -- writing down everything you eat and when symptoms occur -- is a good first step in looking for problems with other foods.)

    Return to the Table of Contents

    I'm feeling better (or I never had obvious symptoms).
    How can I tell if I'm gluten-free?

    One of the antibody blood tests can be used to check on how well you are sticking to a gluten-free diet. Because the IgA antibodies drop off quickly when a gluten-free diet is maintained, this test can be used to look for reactions to gluten.

    Return to the Table of Contents

    After years of having diarrhea, now I'm constipated. Help!

    Cook with whole grains whenever possible. Use brown rice. Put brown rice flour or rice polish in breads, cookies, pancakes, etc. Or, use guar gum in your baked products for its natural laxative effect. Eat lots of pears and other fibrous fruits and vegetables. Drink V-8 juice! Drink lots of liquids. Exercise! If the situation is dire, prunes in moderation will help.

    Return to the Table of Contents

    How can I survive restaurants, parties, travel and entertaining?

    There are several strategies for social survival in a wheat drenched world.

    In restaurants, your main strategy should be to explain the situation to your server. Don't be shy, many people do it. Just be polite and you may find your server and even the chef will be interested enough to ask questions. (After all, food service is their business.) Ask for help in determining what is safe.

    Some of the celiac societies (CSA/USA, GIG, and the Canadian Celiac Association) offer a "diner's card" that you can hand to your server; it will help explain the limitations of the celiac diet. GIG's card is available in multiple languages.

    Certain members of our list have also been known to bring their own pizza to their local pizzeria and have them add toppings and cook the gluten-free pizza right there, to be enjoyed with non-celiac friends. Just be sure it isn't going into the same spot in the oven as the regular pizzas!

    Don't forget your local celiac support group -- they should be able to provide you with names of restaurants in your area that have safe food and many have probably already been introduced to the celiac diet by other celiacs. (Imagine: you're provided with the chef's name. You get to go to the restaurant and ask for the chef BY NAME; won't that impress your friends?)

    Don't let a gluten-free diet limit your vacation fun. Some of the celiac societies sponsor gluten-free cruises which have been enjoyed by many. Making arrangements in advance (and in writing) with providers is also a good idea. You can bring your own bread -- frozen -- and have it brought out at meals. Also, you can bring your own snacks.

    A similar strategy can be used when going to parties. If you don't mind the party-giver knowing of your condition (and most of us feel that the more people who are informed about it, the better off the celiac population will be), just discuss your diet in advance. Bette Hagman, in one of her recipe books, suggests that meringues are a safe, gluten-free desert fancy enough for any dinner and recipes can be found in most cookbooks.

    Alternate plans include bringing your own, or eating a filling meal before the party and then limiting your self to what you know is safe.

    If you are the one doing the entertaining, you could, of course, provide foods you cannot eat. On the other hand, why not let them eat gluten-free cake? Cook the foods you like best. A good strategy is to make, from among your favorites, foods that are unusual (instead of substitutes for gluten foods like bread or pasta), foods that you generally don't see at parties. That way, your guests won't have preconceived notions of how the food should taste.

    Return to the Table of Contents

    Which alcoholic beverages are safe?

    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. While the distillation process should leave no room for glutens to wind up in the end product, many celiacs do report problems with ingestion. (One theory is that some of the original "mash" may be added back in at the end of the process for flavor. This is worth researching with the manufacturer of your favorite product.)

    Many liquors are made with grain alcohol and so may be suspect. Whiskey, bourbon, gin and rye are definitely off the list, since they are made with rye and barley. Beer, too, must be avoided, since malt (usually from barley) is an ingredient. Even rice beers use malt.

    Return to the Table of Contents

    Is celiac disease ever mistaken for other diseases?

    Two malabsorption syndromes that are similar to celiac disease are Whipple's disease and giardia. Neither of these responds to a gluten-free diet, however, and each has tests that can be performed that are specific to those diseases.

    Young women with a history of low body weight despite high calorie diets are sometimes misdiagnosed as having an "eating behavior disorder" like bulimia or anorexia nervosa.

    Because intestinal complaints may vary widely even in one individual -- who may suffer from alternating constipation and diarrhea, as well as excessive gas and abdominal pain -- "irritable bowel syndrome" is another common misdiagnosis.

    Because the symptoms of celiac disease are so varied, and can be different from one individual to the next, they can easily be mistaken for other diseases. This is why it is often called "The Great Mimic."

    Return to the Table of Contents

    Are there other diseases related to celiac disease?

    Among celiacs and their relatives, there appears to be a higher incidence of other disorders related to the immune system. A partial listing of these includes insulin dependent diabetes mellitus (type I), Graves' disease, Addison's disease, scleroderma, chronic active hepatitis, myasthenia gravis, systemic lupus erythematosus, and Sjogren's syndrome.

    Organizations that assist with these associated diseases can be found in the file Rel-Dis.

    In addition, a gluten-free diet appears to have helped some individuals with autism, chronic fatigue syndrome (myalgic encephalomyelitis or ME, PVS, post viral fatigue syndrome or PVFS), attention deficit disorder (ADD), and ADHD; though it is by no means a cure for any of these.

    Return to the Table of Contents

    Discussions on the amount of gluten in foods.

    The following material was done in cooperation with Don Kasarda.

    Q. How can I determine the amount of gluten from the weight of the wheat in food?

    A. For 100 units of whole grain wheat, about 70 units of white flour results from the milling process. The rest is separately sold as wheat bran or wheat germ. Those 70 units of flour are about 10 percent- 15 percent protein, thus about 7 to 10 units of protein for 100 units of whole wheat. The protein is about 80 percent gluten, thus about 6 to 8 units of gluten for 100 units of whole wheat. Since one typically sees wheat flour as an ingredient, appying the 70 percent factor implies 8 to 12 units of gluten per 100 units of wheat flour.

    Q. Sometimes I see references to the amount of prolamin or gliadin instead of gluten.

    A. To cereal scientists, gluten is the same as prolamin, but in some older terminology only the gliadin fraction is termed prolamin. Gliadin makes up about half of the gluten. The other half is often called glutenin, but it is very similar to the gliadin half in composition and structure and I suspect that it is toxic to a large extent. It would be simplest to say that gluten equals gliadin equals prolamin as far as toxicity is concerned.

    Q. How is wheat starch made? Why is some starch said to be more toxic than others?

    A. Most of the wheat grain and of white flour is made up of starch granules. Starch granules make up about 75 percent of grain or of white flour. In the processes used to make wheat starch, a small amount of the gluten protein (actually mostly the gliadin fraction, but not entirely), sticks to the surface of the starch granules. The amount depends on the washing method, how many times the granules are washed, and factors like that. Wheat starch can be made very low in surface protein and it is only the surface protein that is of concern (there are some internal granule proteins, but we are pretty sure that they are not gluten proteins).

    Q. How much gluten is in wheat germ and wheat bran?

    A. I don't know how much gluten they contain, but my feeling is that it is likely to be more than you would find in wheat starch and so best avoided by celiac patients.

    Addtional discussion of this matter from the Cel-Pro List is available in the file MXGLUTEN

    Return to the Table of Contents

    How can I get more information?

    The national support groups listed previously offer new celiac packets and frequent newsletters. Local support groups hold regular meetings and provide a chance for you to interact with other celiacs. Many local support groups offer newsletters, cookbooks, and other information.

    The Listowners invite you to join fellow celiacs in daily discussions by subscribing through the following form:

      E-mail address:
      Names are for Subscribing Only:
      First Name: Last Name:

    Shortly, you will receive a request to confirm the subscription (reply with the word OK). Thereafter, several informational messages, and the next posted message will be sent to you.

    Past posts to the Celiac List are kept in archives, starting with November, 1994. To get copies of past posts to the Celiac List, send an Internet email message to: listserv@LISTSERV.ICORS.ORG. You can ignore the subject line (it won't have any affect). Enter the following as the text of your message:

      GET CELIAC LOGyymm

    where "yy" is the two-digit year, and "mm" is the two-digit month. You can get more than one month's worth of postings by specifying several "GET" commands, one per line. For example, to get the postings for the Celiac list's first three months, you would send this message to listserv@LISTSERV.ICORS.ORG

      GET CELIAC LOG9411
      GET CELIAC LOG9412
      GET CELIAC LOG9501

    Starting with the 1996 logfiles the format is LOGyymmx, with "x" denoting the week. "x" can be "A", "B", "C", "D", or "E". These are rather large files, ranging from 250-600K in size (or 80-200 pages of printed text). Depending on the storage restrictions of your system, you may want to only "GET" one at a time. They come across as ASCII text.

    You can then use your favorite word processor to do searches for key words of subjects that interest you, or read them completely. You'll learn a lot!

    An interactive search is also available to allow you to submit the request from the current program that you are using and to receive the answer during this logon session.

    You can also get a collection of fact sheets to supply more detailed discussions about these and other commonly asked questions. This is called the NEWCEL PACKAGE. Included in this package are: a larger list of GF vendors, GF diet instructions, and many other items of interest.

    SUMMARY
    CD information guide
    GFDIET
    Dietary info for the GF diet
    COOKBOOK
    Cookbooks
    VENDORS
    Sources of GF products
    INCIDENC
    Familial incidence of CD
    GRAINS
    Grain toxicity
    DIAG-TST
    Diagnostics tests for CD
    MEDCARE
    Initial Assessment and Follow-up Care
    SPECTRUM
    The Widening Spectrum of Celiac Disease
    To get this package, send this message to listserv@LISTSERV.ICORS.ORG

      GET NEWCEL PACKAGE CELIAC
    Return to the Table of Contents

    Thanks for work on this FAQ goes to:

    Linda Blanchard, Dave Bridges, Bill Elkus, Mike Jones, Don Kasarda, Jim Lyles, Becky Markle, Peter Thomson, Joe and Mary Alice Warren, Don Wiss and all the members of the Celiac List, whose posts to the list have been mined for the information above.

    Return to the Table of Contents

    Copyright 1995 - 2002 by Michael Jones, Bill Elkus, Jim Lyles, and Lisa Lewis - All rights reserved worldwide.

    Permission is granted to copy this document, at no charge and in its entirety, provided that the copies are not used for commercial advantage, that the source is cited and that the present copyright notice is included in all copies, so that the recipients of such copies are equally bound to abide by the present conditions. Prior written permission is required for any commercial use of this document, in whole or in part, and for any partial reproduction of the contents of this document exceeding 50 lines of up to 80 characters, or equivalent. The title page, table of contents and index, if any, are not considered to be part of the document for the purposes of this copyright notice, and can be freely removed if present.

    The purpose of this copyright is to protect your right to make free copies of this paper for your friends and colleagues, to prevent publishers from using it for commercial advantage, and to prevent ill-meaning people from altering the meaning of the document by changing or removing a few paragraphs.

    Return to the Table of Contents

    Disclaimer

    This fact sheet has been designed to be a general information resource. However, it is not intended for use in diagnosis, treatment, or any other medical application. Questions should be directed to your personal physician. This information is not warranted and no liability is assumed by the author or any group for the recommendations, information, dietary suggestions, menus, and recipes promulgated. Based upon accepted practices in supplying the source documents, this fact sheet is accurate and complete. Products mentioned or omitted do not constitute endorsement.

    Return to the Table of Contents