<<Disclaimer: Verify this information before applying it to your situation.>> Notes from Small Group Discussions ---------------------------------- At our September meeting we broke up into small groups, with each group discussing a different topic. Then we reconvened into one large group and shared what each group had learned. Here are notes from some of these groups: Senior Celiacs, reported by Tom and Carolyn Sullivan -------------- Seven members gathered for the Seniors small group discussion. One member is a celiac diagnosed for 20 years who values the group because she no longer has to go it alone. Another is a gentleman whose daughter was diagnosed with dermatitis herpetiformis (DH) last year who has been wondering about his years of bowel problems. (He was advised, of course, to NOT go on the diet until he has a proven diagnosis.) The rest included the usual lengthy do-it-yourself struggles to get a diagnosis. Most seniors have, over the years, adjusted their diet to not eat foods that didn't agree with them, most of which just happened to contain gluten as they now know. So their attitude toward the diet is very straightforward: If it doesn't contain gluten and it doesn't bother you, enjoy. If you don't like it or if you react to it, no matter what it does or doesn't contain, don't eat it. A follow-on to the diet discussion was the observation that we must learn to separate celiac reactions from normal "human" reactions. Not all reactions are celiac reactions caused by gluten. People can react to other things at times. One member indicated that for her, Fosomax works. [Fosomax is a prescription drug that helps stop bone loss and, in some cases, can even reverse bone loss to some extent.--ed.] After nine months of use, a second bone density test showed improvement. This observation also brought an agreement that one should maintain a file of their own medical records. Always get a copy of every medical test or document that deals with you and keep your own records. This allows you to review your own records at your leisure, do your own analysis, and develop your own line of questions, if necessary, for your doctors. One individual did not ever use vinegar because they thought it had to be grain based. They were assured that all apple cider vinegars, all wine vinegars, and most balsamic vinegars (check the label) are perfectly safe for celiacs. Also, Heinz distilled white vinegar comes from corn and is also safe for celiacs. [Watch out for Heinz apple cider FLAVORED vinegar, however. It was recently learned that this particular vinegar is NOT gluten-free and should not be used by celiacs.--ed] Summertime Problems, reported by Mary Guerriero ------------------- The members in this group talked about dining out. Marilyn Ponto mentioned several celiac-friendly places, including the Belfry at Stratford, and the Rainbow Restaurant, an Oriental restaurant on the southeast corner of 9 Mile and Farmington which has celiac meals. We also talked about traveling and what to take. Many group members like to take Ener-G's 2-slice bread sample packs. One member has had trouble with a rash on her head (so it was interesting hearing Matt Lee's talk from the DH group about the rash on his head). She thought it was from the shampoo having wheat in it. [If so, this would probably be an additional sensitivity, beyond the usual celiac gluten reaction--ed.] The group also discussed problems with eating when on a date. The group had a single man and two single women. All three felt it was embarrassing to have to deal with special diet demands when eating out on a date. We talked about using the restaurant card to help with this, and maybe using this as a chance to lightly introduce the topic of celiac disease. Overall the group didn't have many special problems over the summer; just the usual problems celiacs deal with all year round. Parents of Celiac Children, reported by Kent Helmer -------------------------- Most of the parents in this group had celiac children 3 years old or older, who were thriving on the diet and showing few or no symptoms. They were typically diagnosed at 1.5 to 2 years of age, though some were diagnosed at an older age. Most agreed that all first-degree family members of a celiac child should be tested, though it seems that some of the fathers were reluctant to undergo this testing. The issue of a celiac child rebelling came up: * Some parents found that their celiac child would cheat on the diet when they were with friends. * Celiac kids can get emotional about the things their friends are having that they have to miss because of the diet. * Snacks at athletic and school events can be a problem. One solution is to pass out to the other parents a list of commonly available GF items, so that the snacks provided might be something your child can have. [A sample list is provided elsewhere in this newsletter.--ed.] Also, it pays to have a "backup" snack available in case the other parents forget about the GF food list. * When your child has a play date at a friend's house, be sure to send a list of GF snacks to the friend's parents ahead of time. One of the reasons that some young children are tempted to cheat is that they often don't show obvious symptoms after eating gluten. Unlike many adults, celiac children often don't have instant "bad reactions" to small diet "slips". The group decided to have a pot-luck pizza party for celiac children and their families. [Details are elsewhere in this newsletter.] Toni Richardson's Pizza Shell recipe was recommended. (Toni was a long-time member of the group who passed away a few years ago, but her memory lives on in her many wonderful GF recipes.) This recipe can be found in the new patient packet that each member of TCCSSG got when they joined the group. (Look for the sheet entitled, "Sandwich Buns & Pizza Shells".) Also, it was posted on the Celiac Listserve a few years ago so you can also find it there.<3> New Celiacs, reported by Ella Lobbestael ----------- There was a lot of discussion and usual questions. Ella shared a few tips from the discussion: * Celiacs should not share the same toaster with other family members, due to cross-contamination from regular bread crumbs. * Keep a good supply of the mixes from Bette Hagman's cookbooks in your pantry, as this makes meal preparation a lot easier. Hospitalization, reported by Ron De Cicco --------------- [Note: Ron wrote a good article about his hospitalization for knee replacement surgery, which can be found in the April 1997 issue of The Sprue-nik Press.] * Make sure the admitting physician marks on your chart that you are a celiac. * Remember that the hospital dietitian doesn't actually prepare your food, so be careful of what you are served and question anything that looks suspicious. * Prepare your own food ahead of time, if you can, and store it in the hospital or have someone bring it in to you each day. * I.V.'s should be okay, but check pills and other medications. [A Note from our Physician Advisor: When you are ill and need to take a prescription, particularly if it is an antibiotic, you'll have to strike a balance between trying to remain gluten-free (GF) and getting well. If you are unable to determine if an antibiotic is GF, it is probably better to go ahead and take it. The most immediate concern is to kill off the bug that is making you sick. Any gluten contamination, particularly in pills, is going to be slight anyway. Antibiotics kill off the "good" bacteria in your digestive system, as well as the "bad" bacteria. This tends to cause diarrhea, both in celiacs and in non-celiacs. So if you have diarrhea while you are taking an antibiotic, it does not necessarily mean that the antibiotic has gluten; more than likely it is simply a normal side-effect that you needn't be concerned about unless it is severe or persistent. Having said that, I want to make it clear that for any long-term prescription you should investigate and make sure it is GF. If it is critical to start the medication right away, then do so; but also investigate and make sure that for all subsequent refills you get a GF alternative. It may be necessary to risk some slight, possible gluten contamination for 10 days, as the lesser of two evils. It is quite another thing to have gluten contamination in a medicine you must take for weeks, months, or the rest of your life, something I definitely would not advise.--Thomas Alexander, MD]