TIPS AND ADVICE FOR CELIACS AND THOSE WHO MUST MAINTAIN A GLUTEN FREE DIET

With encouragement and help from several others on an international celiac discussion list, I have written this letter in hopes that it will be a help to those with celiac, aka celiac disease, aka celiac sprue. I have no medical qualifications other than listening to people on this discussion list and five years of research and experience with the problem. But several people, who know more than I, have checked this out and corrected any errors they could find. I hope the suggestions in this letter are pertinent to your interests. Several people have printed this letter off and given copies to their skeptical relatives and friends, who believe they are exaggerating the condition or that it's all in their head.

The question of testing for celiac disease and what doctor to use is of primary importance. There is a common opinion that only about 5 to 10 percent of the professionals in any discipline (doctors, lawyers, professors, mechanics or electricians) are competent. Gastroenterologists may see less than three true celiacs in a lifetime's practice. Many celiacs in this discussion group have had experience with going to several doctors, none of whom can seem to find what is wrong with them. They have been diagnosed as having one or more of a myriad of complaints -- or dismissed with: "Oh, it's just irritable bowel syndrome," or "It's all in your head." It is not! Celiac symptoms often resemble those of an astounding number of other problems and diseases, mostly digestive diseases. Celiac can also cause a litany of other diseases. That's why it's often called "The Great Masquerader." Only after finding a rare good doctor who knows something about this disease do patients find for certain whether or not they are celiac. A doctor must THINK the possibility of celiac disease before she can diagnose it.

Good advice is simply to contact your nearest celiac support group (look in white and yellow pages under "celiac" or "gluten") and ask them to recommend a GI doc that their members have found to be reliable. If no groups are listed, check Scott Adam's excellent site <http://www.celiac.com/> or call CSA/USA (Celiac Sprue Association), (but remember, they will not tell you about groups that are not affiliated with their organization). Or you can ask on the list here if anyone in your locale had had experience with a good celiac doc. That simple step can save you a lot of time, money and problems.

Most celiacs once agreed that the only trusted way to diagnose this disease is to have a biopsy of the small intestine and the blood screening antibody panel (3 tests) WHILE STILL LIBERALLY INGESTING GLUTEN containing foods -- then have the blood sent to a reputable national laboratory experienced in celiac testing. If you have been eating "gluten free" (GF) for a while, the biopsy and the blood tests are worthless. They will almost certainly give false negatives -- even if you are liberally ingesting gluten, if the biopsies are not taken properly or read properly, they can still produce an 8-15% false negative. The blood tests also give false negatives from 10 to 50 percent of the time (according to which study you believe). If you are liberally ingesting gluten prior to the testing and you register negative, you may want to have another lab perform the tests after finding out, from the celiac organization of your choice, which labs are competent to perform this test. If you have been GF for a while, opinions vary on the amount of time you must eat gluten again prior to testing; the length of time recommended varies from three weeks to three months. Some insist you should be as sick as you were to begin with. So if you are now eating gluten it is prudent to continue till you have the biopsy -- especially since reactions are likely to be far more severe after being GF for even a short while. Many celiacs who react too violently to the gluten to ever go back on it for the required time may come to realize they have wheat/gluten problems after an elimination diet. A wheat "allergy" is different from gluten "intolerance," although many of our resources are important for those with wheat allergy. But the biopsy itself, everyone seems to agree, is much easier and milder an experience than it sounds when it is first suggested. They will sedate you so you remain relaxed, and then worm a small tube down your throat to take the biopsy. Most say they felt only slightly uncomfortable. But like any surgical procedure, the biopsy can do some harm, even causing hiatal hernia.

For an excellent in-depth explanation of the tests and what they mean, try this website: http://www.enabling.org/ia/celiac/diag-tst.html#US

Some of the many and varied symptoms and reactions that celiacs, and others who are intolerant to gluten, may manifest are: GI distress including vomiting and chronic diarrhea from mild to incredibly harsh; aphthous ulcers of the mouth; mood swings; constipation; gas; foul smelling flatulence; abdominal bloating; mental fogginess; migraine headaches; Dermatitis Herpetiformis rash (DH) often on elbows, buttocks, knees and feet); muscle wasting (especially in the buttocks); increased or decreased appetite; bad temper; weakness; fatigue or lack of energy; migraine-like headaches; asthma, epilepsy; alopecia (loss of all hair); condiderably underweight or overweight; and malabsorption, which causes almost anything from psychological problems or psychosis (including schizophrenia, autism, and tourette syndrome) and/or anemia to osteoporosis, smooth tongue with cracks in the corner of the mouth, leg cramps from calcium deficiency, and edema from low blood protein. And the Canadian Celiac Association and some others say that eyelashes that are noticeably longer than normal are also a symptom. Many doctors and celiacs insist that if you have DH you are celiac. Untreated celiac patients have an increased incidence of osteoporosis and intestinal lymphoma.

Another symptom some celiacs may manifest is floating stools. Stools may float for either of two reasons: 1. steatorrhea, is when the celiac does not absorb fat and it passed on in the stool, which is a pale color, floats and leaves an oily film on the water surface; 2. when there is a lot of gas and that gas is absorbed into the stool it floats because it has air in it and does not leave an oily film. This may be a dark color.

You will find the celiac world is complex, and there is considerable controversy among celiacs, celiac organizations, and different nations as to what may harm us or cause and what will not. The UK, for instance, says food that has "wheat starch," which is supposed to have the gluten removed from it, is gluten free (GF). Perhaps this letter will help to simplify a complex issue.

GRAINS THAT CONTAIN GLUTEN in order of the amount of gluten in them: Wheat, rye, spelt (or spelta), kamut (or kawmut) and triticale (all are wheats), rye, barley and oats. All grains containing gluten must be avoided for life. Some studies with specially grown pure oats find they may not contain gluten, but ALL commercial oats are contaminated with wheat, so oats may be an option if you grow your own.

GRAINS THAT MAY ELICIT A REACTION due to cross contamination or individual sensitivities: Millet, sorghum, teff, ragi, quinoa, amaranth, and buckwheat (which is really not a grain). Some have even claimed an intolerance to canola oil, but it is not clear why this should be so. You may wish to observe consumption of this to see if it affects you. Different celiac organizations and individuals have differing opinions concerning these substances.

Some celiacs are intolerant to all grains or carbohydrates. It may be better initially to limit your diet to rice and later experiment with other grains. But remember: though some will react within a few minutes, some rare celiacs may not react for as much as three days after ingesting an offending substance. It's a good idea to keep close track of what you have eaten before each reaction by keeping a food diary, listing everything you eat till you get a solid idea of what may be toxic to you. This is doubly important to do for celiac children. Furthermore, some celiacs may not react at all after ingesting gluten, and many go though a long period of adolescence, sometimes through the twenties, when they do not react; it's doubly important for them to check out everything before they ingest it. Any ingested gluten still does terrible damage to a celiac's intestines whether or not they react to it.

To have celiac, it is believed, you must first have a genetic predisposition to it, and the prevalence of celiac disease is approximately 10 percent in first-degree relatives of celiacs. But the disease may not be active when you are young. Sometimes it takes a psychological or physical trauma (such as a major operation, esp. GI) to activate the problem. There is some evidence that a specific virus can do so too. So many celiacs may not have problems till they are older; forty percent are diagnosed after reaching sixty.

There is also some controversy over which vinegars are GF and which are not, but if you follow this simple guideline you will be safe till you form your own opinion: "Pure" apple cider and wine vinegars are safe. Many hold that you should avoid distilled, clear, and white vinegars, as well as "cider flavored" vinegar unless you are assured the product is made from corn and does not use a grain sludge or mash or as starting material.

Also many celiacs are lactose intolerant because the villi in the small intestine (which are damaged and flattened by gluten) are the site of lactase production -- specifically the tips of the villi which may be damaged first. Without this lactase we are unable to digest lactose. In this case some celiacs may be lactose intolerant, but sometimes this intolerance may go away after the small intestine has time to repair and is in good shape again. In bad cases this may take as long as two years. The problem here is that the villi may lose their ability to produce lactase after not doing so for two years. So it might cause a little discomfort for a while to reintroduce milk.

Many who are just lactose intolerant may be able to drink Lactaid 100, which is real milk with all the lactose removed. But some may also be sensitive to the protein or casein in milk. In this case they may want to drink soy or rice milk, if they are not sensitive to that too. Here are the two brands I've checked on and find to be decent tasting, and they are easy to remember because everything in their line of milk substitutes is (GF): Pacific (all rice and all soy milk substitutes) and Better Than Milk (all soy milk subs). For additional choices check this website: http://www.fastlane.net/homepages/thodge/MILKALT.txt

Celiacs must also be aware that some may have damaged their intestines so much that molecules of some substances can "leak" through the walls. This may cause sensitivities to other foods as well; hence, in order to avoid this, it's imperative to maintain a diet that will allow the intestine to heal as soon as possible. Because of this "leaky gut," celiacs may develop sensitivities, allergies or intolerances to almost any food. For further information check: http://www.healthy.net/library/articles/galland/Leakygut.htm

Many, perhaps even most, feel we have found more help on this list than from any doctor, or especially from any dietitian. Doctors or dietitians may insist this problem is all in your head: They're wrong. There are a few dietitians who are interested in celiac and can be of some help, but they are rare. Most do not know "diddley."

Here are some Internet sites we have found helpful. Keep in mind that not all celiacs nor all celiac organizations, nor all countries agree on everything:

http://www.ajcn.org/cgi/content/full/69/3/354#SEC8 = Every celiac should read this first. A very helpful article by Dr. Murry, perhaps the most knowledgeable of celiac docs.

http://ojr.usc.edu/indexf.htm?/sections/resources/99_stories/points_050799.htm = This is Celiac Reference Files maintained by the listowners of this list.

http://www.aafp.org/afp/980301ap/pruessn.html = an excellent article: "Detecting Celiac Disease in Your Patients," by HAROLD T. PRUESSNER, M.D., University of Texas Medical School at Houston.

http://www.gluten-free.org/ = Don Wiss's site has a lot of information and links to other helpful sites.

http://csaceliacs.org/ = This is the Celiac Sprue Society's site. You may want to order their 89 page CSA commercial products listings booklet. It lists a lot of brand names of GF products, and it is a great help at first. Some celiacs do not trust the organization or the booklet implicitly so they phone and check out everything before they eat it, but it's a good place for beginners to start , rather than starting blind with no idea as to what may or may not be GF:

http://www.gluten-free.com/contacts2.html#G = This offers numerous sites where you can check on just about anything, including some sites where you can order GF products.

http://www.geocities.com/HotSprings/Spa/4003/gf-index.html = Another good site that has extensive lists of GF foods, medicines, beverages, etc.

http://www.stokesrx.com/ = You can order Stokes book, A Guide Through the Medicine Cabinet. It will tell you whether most medicines have gluten or lactose in them. Or you can have them prepare GF or lactose free medicines for you.

http://www.enabling.org/ia/celiac/sn/spnk9701.html#trier = Doctor Murray explains some of the symptoms of celiac disease.

For Canadians, either: http://www.celiac.edmonton.ab.ca/ = Canadian Celiac Association
or http://www.celiac.ca

Recommended books: Against the Grain by Jax Peters Lowell; Prescription for Nutritional Healing by Balch & Balch; any or all of Betty Hagmans Gluten Free Gourmet series; Brain Allergies by William Fillpot and Dwight Celiata; Allergies & Your Family by Doris Rapp;
The Impossible Child by Doris Rapp.

Here are some companies (US and Canadian) where you may order GF food by mail:
Ener-G Foods: http://www.ener-g.com/nrg2.html
Gluten Free Pantry: http://www.glutenfree.com/toc.htm
Gluten Free Mall: http://www.glutenfreemall.com/
Kinnikinick: http://www.kinnikinnick.com
Miss Robens:
http://geocities.com/HotSprings/Spa/4003/gf-meds-toiletries.html = website with GF medicines and toiletries.