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.
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.
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.
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.
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.
In between these two extremes lie a wide variety of symptoms that include:
Individuals have reported such varied symptoms as:
In children, the symptoms may include:
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.
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.
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.
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
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 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.
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:
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.
|CSA/USA||TCCSG Shopping guide|
|PO Box 31700||47819 Vistas Circle|
|Omaha, NE 68131-0700||Canton MI. 48188|
|Cost $20.00||Cost $12.00|
|Last update Oct 03||Last update Nov 03|
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.
American Celiac Society (ACS)
59 Crystal Ave
West Orange, NJ 07052
Canadian Celiac Society
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
Celiac Sprue Association/USA (CSA/USA)
PO Box 31700
Omaha, NE 68131
Gluten Intolerance Group of North America (GIG)
15110 - 10 Ave SW, Suite A
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.
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?"
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).
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.
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.)
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.
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.
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."
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.
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
The Listowners invite you to join fellow celiacs in daily discussions by
subscribing through the following form:
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:
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
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.
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.