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The following report comes to us from The Sprue-Nik Press, which is published by the Tri-County Celiac Sprue Support Group, a chapter of CSA/USA, Inc. serving southeastern Michigan (Volume 7, Number 6, September 1998). The degree of mucosal damage varies from one celiac patient to another. Also, the amount of the small intestine that is affected also varies, with the damage usually progressing from the beginning of the small intestine and then moving downward toward the end of the small intestine. This may explain the variable symptoms in different patients. For example, when a significant portion of the small intestine is involved, diarrhea, malabsorption, and weight loss result. When damage is isolated to only the top portion of the small intestine, the only affect may be iron deficiency. (Incidentally, when iron deficiency is not corrected by iron supplements, it is highly likely that celiac disease is the cause of the deficiency.) Gluten in a celiacs diet causes the immune system to produce gliadin antibodies in the intestine. Some of these leak into the bloodstream where they can be detected in blood tests. These blood tests are useful for screening for celiac disease, though a small intestinal biopsy remains the gold standard for diagnosing celiac disease (celiac disease). There are few diseases for which diet and nutritional issues are more important than for celiac disease. At this time, the only known treatment of celiac disease is the removal of wheat, barley, rye, and oats from the celiacs diet. On the surface this sounds simple, but complete removal of dietary gluten can be very difficult. Gluten-containing grains are ubiquitous in the Western diet. Also, grain-derived food additives such as partially hydrolyzed vegetable protein [and modified food starch] are widely used in processed foods and oral medications. Content labels are often vague or incomplete regarding these additives. What further complicates matters is a lack of significant experience on the part of physicians and dietitians in the dietary treatment of celiac disease. This is mainly because there are so few celiac patients for anyone practitioner. Therefore the best sources of dietary information for a new patient are other knowledgeable, more experienced celiacs. It is very important that the diet be followed with full and strict compliance. Celiacs, especially if theyve had active celiac disease for a longtime, are at higher than normal risk for GI malignancies.(Fortunately, compliance to a good gluten-free diet returns the risk of malignancy and life expectancy to that of the general population.)Another complication of long-term untreated celiac disease is bone loss, which maybe irreversible in older patients. When a large portion of the small intestine is affected by active celiac disease, the result can be a generalized malabsorption problem, resulting in deficiencies of water- and fat-soluble vitamins and minerals. Folic acid deficiency is particularly common in celiac disease because, like iron, it is absorbed in the upper small intestine [where the highest concentration of celiac-related damage generally occurs]. Folic acid is necessary for DNA replication, which occurs in cell turnover. So a deficiency of folic acid can impair the regenerative ability of the small intestine. Vitamin B12, also essential to DNA synthesis, is not malabsorbed as commonly as folic acid. Magnesium and calcium deficiency are also common in active celiac disease, because of decreased intestinal absorption AND because these minerals tend to bind with malabsorbed fat which passes through the system. It is particularly important for doctors to assess the magnesium status of celiacs, because without correction of a magnesium deficiency, low levels of calcium and potassium in the blood cannot usually be corrected with supplements. In severe cases, magnesium supplementation should be done intravenously because of the tendency of oral magnesium to cause diarrhea. Supplemental calcium generally should be provided to celiacs, possibly with vitamin D, to help restore tissue and bone calcium levels to normal. The exact dose of calcium is not known. Dr. Fine usually recommends 1500-2000 mg of elemental calcium per day, divided into two doses, for several years and sometimes indefinitely. [4], [5], [6] Zinc is another mineral that often becomes depleted in patients with chronic malabsorption. Zinc supplementation (usually the RDA via multi-vitamin and mineral supplements) helps avoid skin rashes and restores normal taste. Up to 20% of celiacs will continue to experience loose or watery stools even after going on a gluten-free diet. Sometimes this is due to inadvertent gluten in the diet, but a recent study at Dr. Fines medical center showed that in these cases other diseases epidemiologically associated with celiac disease are present.[7] These include microscopic colitis, exocrine pancreatic insufficiency, lactose intolerance, selective IgA deficiency, hypo- or hyperthyroidism, and Type I diabetes mellitus. When diarrhea continues after beginning a gluten-free diet, a search for these associated diseases or others should be undertaken and treated if found. The use of cortico steroids has been advocated in celiacs when the response to the gluten-free diet is sluggish or absent. This is necessary more often in older than in younger patients. However, pancreatic enzyme supplements (prescribed by a doctor) may be needed to help digestion and resolve ongoing malabsorption in some patients. The endomysial antibody blood test is highly accurate and specific for detecting celiac disease. However, the current method of detecting these antibodies involves an operator looking through a microscope and observing the antibody binding on monkey esophagus or human umbilical cord tissue substrates. The correct interpretation of results is highly dependent on the skill and experience of the technician interpreting the fluorescence pattern through the microscope. Moreover, determination of the amount of antibody present relies upon repeat examinations following dilutions of the blood serum, with the last positive test being reported as a titer. A new discovery was reported by a research group in Germany.[8] The antigen substrate of the endomysial antibodies has been identified. This allows the development of a new test that can detect and measure serum endomysial antibodies in one, chemically-based test run [thus greatly reducing the potential for human error and significantly reducing the time needed for each test--ed.] These new tests should be available for clinical use shortly. In a recent study, Dr. Fine found that the frequency of positive stool blood tests was greater in patients with total villous atrophy relative to partial villous atrophy, and all tests were negative in treated patients without villous atrophy.[9] This suggests that fecal occult blood may be a non-invasive and inexpensive method of following the response of the damaged intestine to treatment. Also, it should be noted that the high frequency of positive tests due to villous atrophy will decrease the accuracy of the tests when used for cancer screening in this same patient population (which is how these tests are normally used by health care providers). There have been two recent reports touting the lack of deleterious effects when 50 grams of oats per day are added to the diet of celiac patients. Although this finding is exciting for celiacs, both studies possess certain limitations. In the first study, published by a Finnish group, the exclusion criteria for symptoms and histopathology were somewhat strict, so that patients with more mild forms of celiac disease seemingly were selected for study. And though no damage to duodenal histology occurred after one year of oats consumption, no physiologic or immunologic parameters of disease activity were measured. Furthermore, several patients in the treatment group dropped out of the study for reasons not mentioned in the article.[10] The second and more recent study involved only 10 patients, studied for twelve weeks. The favorable results of this study must be interpreted with caution because of the small sample size and short study period.[11] Even the one-year treatment period in the Finnish study may be too short to observe a harmful effect, as it is known that small intestinal damage sometimes will not occur for several years following there introduction of gluten to a treated celiac. At the worst, an increase in the incidence of malignancy may result from chronic ingestion of oats, an effect that could take decades to manifest. Therefore, this issue will require further study before oats can be recommended for the celiac diet. 3. From the September 1998 newsletter of the Houston Celiac-Sprue Support Group, a chapter of CSA/USA, Inc. 4. Ciacci C, Maurelli L, et el, Effects of dietary treatment on bone mineral density in adults with celiac disease; factors predicting response, Am J Gastroenterol, 1997; 92 (6): 992-996. 5. Mautalen C, Gonzalez D, et al, Effect of treatment on bone mass, mineral metabolism, and body composition in untreated celiac patients, Am J Gastroenterol, 1997; 2 (2):313-318. 6. Corazza gluten-free, Di Sario A, et al, Influence of pattern of clinical presentation and of gluten-free diet on bone mass and metabolism in adult coeliac disease, Bone, 1996; 18 (6):525-530. 7. Fine, KD, Meyer RL, Lee EL, The prevalence and causes of chronic diarrhea in patients with celiac sprue treated with a gluten-free diet, Gastroenterol, 1997; 112 (6):1830-1838. 8. Dieterich W, Ehnis T, et al, Identification of tissue transglutaminase as the autoantigen of celiac disease, Nat Med, 1997; 3 (7):797-801. 9. Fine KD, The prevalence of occult gastrointestinal bleeding in celiac sprue, N Engl J Med, 1996; 334 (18):1163-1167. 10. Janatuinen EK, Pikkarainen PH, et al, A comparison of diets with and without oats in adults with celiac disease, N Engl J Med, 1995; 333 (16):1033-1037. 11. Srinivasan U, Leonard N, et al, Absence of oats toxicity in adult coeliac disease, BMJ, 1996; 313 (7068):1300-1301.

Dr. Joseph Murray, of the Mayo Clinic Rochester, MN, is a gastroenterologist who specializes in treating Celiac disease. He gave a talk entitled Celiacs in the 90s at a conference hosted by the American Celiac Society on June 10-11, 1994. What follows are highlights of Dr. Murrays talk. Dr. Murray comes from Ireland, where Celiac Sprue (CS) is much more common. In Ireland, people have a much easier time dealing with the gluten-free (gluten-free) diet, whereas in the US it is almost as though it were considered unpatriotic to not eat wheat. You can reach Dr. Murray at: murray.joseph@mayo.edu. Dr. Murray believes that ALL Dermatitis Herpetiformis (DH) patients also have Celiac disease, whether they realize it or not. This celiac disease is often latent or silent. Earlier reports of patients with DH who did not have enteropathy (small intestinal damage) may not have counted milder forms of the celiac disease damage. (Editors note: Dr. Alexander, our physician advisor, believes most, but not all DH patients have Celiac disease.) Not every Celiac patient suffers weight loss or has diarrhea. One of his patients is a woman who weighed 400 lbs. when she was diagnosed. Her symptoms included nocturnal pain, and constipation. After checking the stomach and some other testing, they did a small intestine biopsy. When they found the classic flat villi, they suspected a lab mix-up because the womans symptoms were so atypical. In this case, the woman was suffering from cravings that caused her to greatly overeat. She was nutritionally over- compensating for the small intestine damage. After being diagnosed, the patient went on the gluten-free diet, lost some of these cravings, and promptly lost 50 lbs. Symptomatic Celiacs can be split into two groups: Those that have the classical CS symptoms and those that have atypical symptoms or only one of the classical symptoms. Patients in the first group are usually (though not always) diagnosed correctly by a gastroenterologist. Those in the second group, which make up about 2/3 of Dr. Murrays patients, are much more difficult to diagnose. Another factor is variable histology, which basically means that the villi are not always completely flat. The average adult has more than 20 feet of small intestine, and often, only the very front part gets severely damaged. Often, the remaining portion of the small intestine is able to compensate for what the damaged section is not absorbing. Dr. Murray believes that we are seeing fewer diagnosed Celiacs in the US than in Ireland because our diets are very calorie-dense. This means that even with malabsorption you are still getting a lot of nutrients so that you absorb enough to not lose weight and not fully develop other symptoms. Gluten causes damage that makes the gut leaky. This can lead to exposure of the bodys immune system to foreign allergens it would not otherwise see. This explains why Celiacs tend to have more allergies than the general population. Dr. Murray believes there are several triggers that can activate Celiac disease in genetically susceptible people: A sudden change to a low fat diet, which usually means a sudden increase in starches, which usually means a dramatic increase in wheat-based products. A woman is susceptible during postpartum, when the immune system is adjusting to the changes after delivery. Surgery, particularly GI (gall bladder, etc.) can be a trigger. Certain viral infections. Also, there is some suspicion that certain antibiotics can be triggers, though in these cases it could also be the infection that the antibiotics are fighting. Dr. Murray believes CS is not an allergy; it is an auto immune disease (Allergy vs. Intolerance). For Celiac disease to develop, two conditions must be met: There must be a genetic predisposition towards Celiac disease. This involves very specific genetic factors. The auto immune system must be triggered in some way. CS tends somewhat to run in families. The incidence in first degree relatives (parents, siblings, children) of a Celiac is about 10%. Anyone who has both a parent and a child with CS should be tested themselves for CS. CS is not entirely genetic. Among identical twins, if one has CS, about 70% of the time the other will also have CS. If the disease were entirely genetic, then the incidence in identical twins would be 100%. Among siblings that are HLA-matched to a Celiac sibling, the incidence of CS is about 30%. When not HLA-matched, the incidence rate is much lower. According to Dr. Murray, since CS is an auto immune disease, it follows that there are other auto immune diseases that are associated with it. Rheumatoid Arthritis, Lupus, Type I Diabetes, and some eye problems may occur more frequently in CS patients. This is not because of gluten or CS itself; it is because CS patients are part of a group that is genetically predisposed towards auto immune problems. About 5% of CS patients also have DH. At the University of Iowa, there have been 350 patients diagnosed with DH. Dr. Murray believes these have celiac disease. If these DH patients are only 5% of the Celiacs, then there should be about 7,000 Celiacs in the Iowa area. The number of diagnosed Celiacs is much less than 7,000. Even if this extrapolation is exaggerated, it is still clear that there are many undiagnosed Celiacs out in the general population. Most DH patients are prescribed Dapsone, which treats the symptoms. In most cases, they are told of the gluten-free diet, but it is not stressed and so most DH patients do not follow the diet. Dr. Murray finds this most distressing, because even if these patients dont have GI-related symptoms, there is still continual damage being done to the small intestine. Dermatologists, in general, dont give enough consideration to a GI problem as the source of DH. This places DH patients at an even greater risk of developing lymphoma in the small intestine. Lymphoma in the small intestine is extremely rare in the general population. Untreated Celiacs have a 70 or 80 times greater chance of developing lymphoma. A lifetime of not following the gluten-free diet gives a Celiac about a 7% chance of developing lymphoma. There is also an increased risk of other GI-related and lymphatic cancers. The risk of developing lymphoma immediately begins to decrease when a Celiac patient starts following a gluten-free diet. The risk continues to decrease until, after 3-5 years, it approaches that of the general population. Dr. Murray makes a small intestine X-ray a routine part of the treatment for a newly diagnosed adult Celiac patient, especially those over 40 years of age. Hes looking for lymphoma in the small intestine. It is very difficult to find, but if it is found it can usually be successfully treated. DH is caused by reactions to antibody complexes that, for reasons not totally clear, become deposited under the skin. These DH breakouts can continue for a long time after a gluten-free diet is adopted, because these deposits are not reabsorbed by the body very quickly. In about 70% of the cases, dapsone treatments can be discontinued after 18 months-2 years; for the other 30% it takes longer. How gluten-free should the diet be? Dr. Murray believes that Celiacs should treat gluten the same way they treat rat poison. Celiacs should never eat food if it is known to contain gluten. Accidental ingestion of gluten should be avoided as much as possible. For a Celiac, it is unacceptable for gluten to be ingested more than once a month, accidentally or otherwise. You can NOT judge whether a food has gluten by your reaction to it. Many Celiacs can ingest small amounts of gluten with no symptoms; however, the small intestine is still being damaged. Dr. Murray stressed that once you have Celiac disease, you will always have it; you will never be able to eat wheat or other gluten-containing products again. This is a fact of life that Celiacs simply must accept and live with. Lactose intolerance is not common in white Caucasian adults of northern European descent; probably close to 5%. (Editors note: According to Dr. Alexander, it occurs in about 30% of the adult US population.) A newly diagnosed Celiac may have temporary lactose-intolerance due to the damage in the gut; the intolerance should disappear once the gut heals. If you are lactose-intolerant, you should be aware that while ingesting lactose may make you uncomfortable, it does not damage the intestine. Most newly diagnosed Celiacs can use temporary lactose-intolerance as a way to check on the healing taking place. Once a month, they should drink half a glass of milk on an empty stomach and see if there is a reaction such as gas, cramps, diarrhea, etc. Failure to have a lactose reaction means that the gut is healing and the diet is working. For most people, lactose intolerance will disappear within six months of being on a gluten-free diet. Dr. Murray advises Celiac patients against smoking. Newly diagnosed Celiacs, as well as those not following a strict gluten-free diet, already have an increased risk of malignancy. Celiacs cannot afford to increase that risk even further by smoking. Refractory Sprue is a rare complication that generally occurs in older Celiac patients. This is a situation where malabsorption continues to occur even though the patient is on a gluten-free diet. Dr. Murray says the first three things you do when presented with refractory sprue are: Check the diet Check the diet again Check the diet a third time Once you have verified that no hidden sources of gluten are causing the problem, then you recheck the diagnosis, look for enzyme supplements to help with digestion, check for pancreatic problems, lymphoma bacterial overgrowth, etc. Diagnosis of CS in the US is probably lower than it should be due to rigid medical practices and old thinking. One common label applied to people with stomach complaints is Irritable Bowel Syndrome. Dr. Murray calls that an intellectual trash can if it is used too widely and if doctors forget about other possibilities, in that it is occasionally over-diagnosed. It really means, There is something wrong with your stomach, and we dont know what it is. The occurrence of stress-induced bowel dysfunction is a real entity. In the US, CS is an exception to the rule concerning research efforts. It is considered to be a marginal disease. There is very little commercial interest in it. CS is definitely under-represented when compared to other diseases that get far more attention. Dr. Murray believes there are too many different national organizations that deal with CS. He believes these organizations need to unify and become one in order to advance the national agenda. He thinks local support groups such as our TCCSSG are doing a lot of good work; he considers belonging to a support group to be an essential part of the treatment of Celiac disease. Dr. Murray recommends physicians associated with local support groups should read a book that thoroughly explains this disease. The book is Coeliac Disease, by Michael Marsh, Blackwell Scientific Publications, November 1992. It costs about $175, but is well worth the cost if it helps a physician become more interested and learn more about this disease.