<<Disclaimer: Verify this information before applying it to your situation.>> 1997 Gluten-Free Gang Conference Highlights ------------------------------------------- summarized by Jim Lyles General Comments ---------------- The Gluten-Free Gang held their ninth annual celiac conference at Children's Hospital in Columbus, Ohio, on December 6th. The keynote speaker was Dr. Joseph Murray, a well-known celiac specialist from the University of Iowa. Dietitian Mary Kay Sharrett spoke on the newest "Do's and Don'ts" for celiacs. There were separate workshops covering: the internet, gluten-free (GF) Asian foods, the mind-body-spirit connection, and manual bread making (hosted by Sandra Leonard, publisher of The Gluten-Free Baker newsletter). The final session had a panel composed of Dr. Murray plus Children's Hospital representatives Mary Kay Sharrett (dietitian), Dr. Li (pediatric gastroenterologist), and Steve Plogsted (pharmacist), which answered questions from the audience. The conference attendees then gathered for a massive potluck lunch. Sponsors of the program (most of whom had tables with materials and samples during the breaks) included our own support group as well as the Central Ohio Celiac Support Group; Ener-G Foods (is there ANY mail-order vendor that does more for celiacs?), the Gluten-Free Baker newsletter, Nestle's, Pamela's Cookies, and Sterk's Bakery. There were 250-300 people who attended this conference. Each participating family received a "grab bag" with three GF food samples (GF pasta, cookies, etc.) from the various sponsoring companies. Also, each received a folder containing: conference agenda; notes for Dr. Murray's talk; "Gluten in Medications" article from pharmacist Steve Plogsted; a pamphlet on celiac disease (CD) from the Celiac Disease Foundation; a subscription form for the newsletter Gluten-Free Living; information on the CD prevalence study at the University of Maryland; information (recipes, an article, and how to subscribe) from the Celiac E-mail list on the internet; handouts and recipes from over a dozen GF vendors and the USA Rice Council; recipes for the potluck dishes; and a detailed conference evaluation form. There were additional handouts at many of the sessions. One of the unique features of this conference (compared to most other celiac conferences) is the way they also cater to the needs of children. There were separate sessions for the kids, broken into three groups: ages 4-6, ages 7-10, and teens. They even provided toddler care (ages 2-3). All age groups seemed to truly enjoy the activities they participated in. The usual barriers to celiac conferences are location and cost. Neither applies to this conference. Columbus is only about four hours away from the Detroit area, so travel expenses are minimal. You could even choose to avoid a night's lodging by leaving early in the morning on the day of the conference. And the fees for the conference itself were only $15 per adult or teenager; with the children being free. All things considered, this conference represents an exceptional value for celiacs in Ohio and the surrounding states. Be sure to set aside some time to attend this conference next fall; you won't be disappointed! The remainder of this article highlights a few of the conference sessions. The Widening Spectrum of Celiac Disease --------------------------------------- Dr. Joseph Murray, University of Iowa [Dr. Murray gave a similar talk to our support group in Oct. 1996, which was summarized in the Nov. 1996 and Dec. 1996 issues of The Sprue-nik Press. This summary will generally focus on items which were not covered in those previous summaries.] There are many different terms which have been used to describe the disease which we generally call celiac disease (CD); only the first of these is preferred: * gluten sensitive enteropathy--this is the most precise definition, as it describes intestinal damage related to the intake of gluten. * celiac sprue--"sprue" implies diarrhea, which many newly- diagnosed celiacs do not have. * idiopathic steatorrhea--this means "unexplained foul-smelling, fatty stools". Many celiacs do not have this symptom, and in any case the cause is known (damaged villi) so it can hardly be unexplained. * non-tropical sprue--again the implication is that diarrhea is a major symptom, which is not always the case. A good working definition of CD is: A permanent intolerance to gluten that results in damage to the small intestine, which is reversible with the avoidance of dietary gluten. The intestine becomes inflamed (swollen). Note that the "damage" to the intestine may or may not affect the ability to absorb nutrients. Some of the more unusual non-gastrointestinal symptoms of CD include rickets, dental enamel defects, epilepsy with intra-cranial calcification, delayed menarche in teenage girls, arthritis (synovitis), neurologic disorders, mental "fuzziness", and lupus and other connective tissue diseases. There are also some unusual gastrointestinal symptoms, including heartburn, gastrointestinal lymphomas and carcinomas [two forms of cancer], abnormal transaminases (liver abnormalities), and unexplained weight loss. Dr. Murray believes that all dermatitis herpetiformis (DH) patients are also gluten sensitive. The gluten sensitivity occurs in the gastrointestinal tract. [For all intents and purposes, gluten-sensitive DH patients are also celiacs; DH may simply be one more non-gastrointestinal symptom of CD--ed.] In celiacs, gluten causes problems in the gut, not on the skin. You could rub wheat flour on the skin or inject it under the skin of most celiacs without causing problems. Celiacs that have reactions to gluten on the skin probably have an additional sensitivity or allergy to wheat or gluten which causes the reaction. Both iron and folic acid are absorbed in the first third of the small intestine, which is often where much of the villi damage occurs in celiacs. Other nutrients can be absorbed further down in the small intestine. This explains why newly-diagnosed celiacs often have unexplained anemia and/or low folic acid levels with no other apparent symptoms. In recent years the "typical" presentation of CD has been changing. CD tends to occur at an older age now. The symptoms are more often atypical instead of the "classic" symptoms of diarrhea, bloating, wasting, and fatty, smelly stools. It is diagnosed more often in adults now than in children. The pediatric age of diagnosis is now 4-7 years, whereas it was much younger in the past. There tends to be less marked growth retardation and fewer deficiencies in newly-diagnosed celiacs now. There are many reasons for this. Breast feeding is now encouraged, whereas in the past it was actually discouraged; this means the introduction of gluten to the diet occurs later. The IgA/IgG antibody blood tests often help to "find" celiacs sooner, before the damage has gotten too severe. Also, there is a trend towards more aggressive screening for CD in many countries. Dr. Murray identified a number of other diseases/problems that are often associated with CD. Besides the "usual" ones, he mentioned pernicious anemia (vitamin B12 deficiency), autoimmune hepatitis, and systemic lupus. CD diagnosis: * the rate in Europe varies from 1:200 (one out of every 200 people) to 1:2,000 * it appears to be rare in Negroid and Asian populations * the rate of diagnosis in most areas is proportional to the degree of suspicion * 6% of adult Type I diabetics in Iowa have CD * 1:10,000 children in Buffalo, New York have been diagnosed with CD * 1:4,700 Olmsted, Minnesota residents have been diagnosed with CD (from a Mayo Clinic study) * the rate in healthy blood donors in most tested countries varies from 1:100 to 1:300 Among diagnosed celiacs, the ratio of females to males is 2:1. However, in screening tests the ratio is 1:1. Why? Are men more likely to accept discomfort as normal? At the University of Iowa, the rate of diagnosis has gone up dramatically, perhaps because there is a higher degree of suspicion regarding CD. Prior to 1988, about 2 cases of CD were diagnosed per year at the University of Iowa. In 1991, there were 18. Currently they diagnose 55-60 cases of CD per year. From 1980-1988 in Iowa, 70% of the diagnosed celiacs presented with "classic" celiac symptoms. Since 1992, only about 30% have the classic symptoms at the time of diagnosis. Many celiacs have been diagnosed or misdiagnosed with other maladies prior to their diagnosis of CD, including: irritable bowel syndrome (IBS), sometimes a catchall for unexplained GI symptoms unless stress-induced primary lactose intolerance psychiatric illness menstrual blood loss diabetic diarrhea giardia inflammatory bowel disease (IBD) pernicious anemia peptic ulcer disease chronic fatigue syndrome pancreatitis/SOD dysfunction fibromyalgia fiber deficiency Dr. Murray believes in aggressively looking for CD: * If you are already doing an endoscopy, then always do a duodenal biopsy. You are "down there" anyway, and it only takes a few more minutes. * Screen all high-risk groups for CD. Along with the "usual" groups, you should look at those with IgA deficiency (which is more common in celiacs) and Caucasians with lactose intolerance. * Look for CD in children with non-specific abdominal pain. Many factors can lead to psychological problems in untreated or undiagnosed celiacs: fatigue not feeling well the diet social isolation vitamin deficiency direct toxic effect of gluten on a leaky gut Dr. Murray spoke of the results of a small study they conducted to compare the results from labs which perform the celiac antibody blood tests. They contacted 8 labs; 6 agreed to participate. They used blood serum samples from 20 biopsy-diagnosed celiacs that had NOT previously had the serum antibody tests. The results: * 2 of 20 had selective IgA deficiency. One lab actually measures endomysial IgG when they detect IgA deficiency. (Normally IgA is measured in the endomysial test.) * The IgA-based endomysial test was 100% specific to CD, but the sensitivity was only 55-90% [meaning up to 45% of the time it failed to find a celiac--ed.]. * The antigliadin antibody test sensitivity was quite variable. * There was no standardization of the tests between labs; each lab measures celiac antibodies differently. Sometimes it is necessary to do a gluten challenge, to get an official diagnosis for someone who has already been following the GF diet. One question that always arises is this: How long should the gluten challenge last? Dr. Murray likes to wait until there have been 2-4 weeks of gut symptoms or a positive blood test before doing the biopsy. What is the recommended follow-up after diagnosis for a celiac? Dr. Murray has this checklist: ensure a well-balanced GF diet take vitamins for 100% of the RDA (recommended daily allowance) calcium and magnesium supplements cholesterol may rise (malabsorption may have caused it to be unnaturally low) check for lactose tolerance after the villi have healed check for complications & associated diseases (such as bone density problems) The Newest Do's and Don'ts -------------------------- Mary Kay Sharrett, MS, RD, LD, Children's Hospital, Columbus, OH The June 1997 issue of the Journal of the American Dietetic Association presented the results of a study involving wheat starch and celiac patients. The study found detectable levels of gluten in the wheat starch used. 11 of the 17 patients that had never consumed wheat starch prior to the study developed symptoms. Also, 2 of the 3 patients with coexisting DH had a relapse of skin lesions. The study concluded that the long term intake of "GF" products containing wheat starch cannot be recommended for celiacs. (Incidentally, the study also found that 2 buckwheat cereals were found to have large amounts of gluten [presumably due to cross-contamination--ed.].) Be prepared for emergencies or natural disasters. Stock ready-to-eat canned meats, fruits, vegetables and juice, and powdered milk. Freeze some GF bread or cereal products. Periodically rotate these products with fresh replacements. If you have a celiac child, write a letter to give to anyone working with your child. Include a list of OK foods your child can have such as fresh fruits and vegetables. If you include processed food items be sure to regularly update the letter. Be adventurous. Try new varieties of potatoes (Yukon golds, purple potatoes, ruby crescents) and rice. Look for new ideas by reading magazines, looking at ads, and surfing the internet. Schedule a new food night once a month. Be organized. Design your own cookbook. Keep a folder for new recipes. Q&A Panel --------- Dr. Murray; Dr. B Li, Children's Hospital in Columbus, OH; Mary Kay Sharrett; and Steve Plogsted, pharmacist, Children's Hospital in Columbus, OH Q: How common is lymphoma in the small intestine? A: (Dr. Murray) T-cell lymphoma in the small intestine is very rare in general. Even in untreated celiacs, it is rare, though more common than in general. For treated celiacs (i.e., those on a strict GF diet), after 10 years on the diet the risk is the same as the risk for non-celiacs. Q: What testing, if any, should be done on the first-degree relatives of a celiac? A: (Dr. Murray) If the relative has no symptoms, then they should still be screened using the serum antibody tests. If there are symptoms, then they should be investigated for CD including a possible biopsy. Q: What is the latest word on oats? A: (Dr. Murray) In the USA, oats are not safe for celiacs due to cross-contamination issues. Also, there are questions about the dose of oats used in the studies which seem to indicate that oats may be okay for celiacs. These studies may not have used enough oats, for a long enough time, to be certain that they do not adversely affect celiacs. Finally, oats don't really add significant nutrition to the diet, so why take the chance? Q: How long does it take to recover once you go on a GF diet? A: (Dr. Murray) For most adults it takes about 6-12 months. However, for elderly celiacs it may take 2-4 years, or they may never fully recover. Q: Are celiacs more susceptible to illness? A: (Dr. Murray) Undiagnosed celiacs may be more susceptible to illness, due to the spleen being affected as well as the effects of malnutrition. Q: If a child's physical growth is affected by undiagnosed CD, will mental development also be affected? A: (Dr. Li) There are no long-term studies about this. Children generally bounce back well once they are on a GF diet; however it is possible that mental development could also be affected. Q: Does MSG (monosodium glutamate) contain gluten? A: (Mary Kay Sharrett) MSG does not contain gluten if it is made in the USA. Q: Is thyroid disease more common in celiacs? A: (Dr. Murray) About 10% of my patients have thyroid disease. Also, about 3-4% of thyroid patients have CD. Q: Is night blindness a common problem for celiacs? A: (Dr. Murray) Night blindness is the most common eye problem that I see with celiacs. Usually the problem is corrected on a GF diet. Q: Is smoking a problem for celiacs? A: (Dr. Murray) Smoking is a problem for anyone! Don't smoke, period. Q: Should there be separate GF and non-GF kitchen utensils? A: (Mary Kay Sharrett) Use common sense. Utensils with smooth surfaces can be used for both GF and non-GF cooking so long as they are cleaned between uses. Utensils with porous surfaces (wooden spoons) might retain some gluten particles after cleaning. Q: Is it a problem for celiacs to inhale flour dust? A: (Mary Kay Sharrett) It is not well known how much of a problem this would be. (Dr. Murray) Just smelling a gluten product should not be a problem. However, some of the flour dust that settles on the nasal passages will eventually get swallowed, which means that some gluten is consumed and digested. Q: Can autism be caused by CD? A: (Drs. Li & Murray) Autism is NOT caused by CD. There is anecdotal evidence to suggest that in SOME cases a GF and milk-free diet may help those with autism.