WESTERN NEW YORKGLUTEN FREE DIET SUPPORT GROUP, INC
GENERAL MEETING – December 10, 2011
The meeting was opened at 10:09 a.m. by President Cliff Hauck. He welcomed all in attendance (55 present; 48 signed in) and asked any newly diagnosed attendees to self introduce (10). He announced that a small group counseling session for the newly diagnosed follows the regular meeting. A bag of gluten free groceries provided by Wegmans will be available for first time attendees. There will also be a raffle at the conclusion of the regular meeting of a basket of gluten free products donated by Wegmans and a cross stitch picture. He announced that samples of products from the new gluten free bakery on Orchard Park Road, Bon Bon, were available at the back of the room.
There was a review of upcoming events:
December 11 – Holiday Luncheon at Curly’s.
January 14 – general meeting – possible food demonstration.
February 12 – Special dining event at the Brookfield Country Club.
February 18 – general meeting – we are seeking a pediatrician as speaker.
He advised that the new Pizza Plant on Transit Road was now open with wheat free available on Wednesday evenings. The Pizza Plant at the Walker Center in Amherst will continue to serve wheat free - but on Sunday evenings, rather than Wednesday.
Grace Little spoke about the library and new borrowing rules. In the future, a limited number of books may be available for sale. Pat Burt advised that membership cards will be available in January. A membership card will be required to borrow from the library. Elaine Rothfus has a survey sheet available re: products sold by Bon Bon. Our webmaster Paula McGirr spoke about web site usage. She indicated growth of the web site is now beyond her current capabilities (time) and asked for volunteers who would be interested in helping.
Cliff then introduced Joanne Schwartzott and Pat Burt who presented summaries of the speakers at the National CSA Conference held in September in San Diego, CA.
Joanne summarized the remarks of Dr. Martin Kagnoff of the University of California and Dr. Peter Green of Columbia University. This included a summary of the interdependence of three factors necessary if an individual were to develop Celiac Disease = Genes, the Environment and the Immune System. They indicated that the identification of the response to gluten was the key to developing ways to treat the disease or at least prevent its adverse impact on the body. Some methods under testing were identified but until positive testing results are verified, the GF diet is our only resource.
Pat summarized additional remarks by Dr. Green which included a description of the epidemiology of the disease and the steps required for its correct diagnosis. He spoke of the management of the disease - the need for follow up with the physician, especially to handle deficiencies resulting from malabsorption and to check that immunizations are up to date and that there are tests for other autoimmune diseases; seeking the advice of a nutritionist to avoid typical problems with the gluten free diet – vitamin and mineral deficiencies, low fiber, and high fat and calories in many GF food choices. He recommended a repeat of the endoscopy after two years on the diet to check for intestinal healing as well as dietary compliance.
Joanne summarized the remarks of Dr. Kimberly Newton of the University of California on pediatric celiac disease. She reminded us that diagnosis during childhood doesn’t go away – the condition is for life. She paid particular attention to the relationship of breast feeding of an infant and the timing of gluten introduction to the child’s diet – her opinion being that introduction while breast feeding may result in half the chance of developing celiac disease. She described various signs that might indicate the disease in a child and the types of testing which should be performed before and after 2 years of age. She also described the type of monitoring which should occur after a positive diagnosis. Specific management issues were also referred to, particularly when the child reaches school age.
Pat then addressed the issue of the oral manifestations of celiac disease which were presented by Ted Malahias, DDS. He indicated that the color and shape of teeth, pitting, canker sores and delayed eruption of teeth in children could be signs of potential celiac disease as well as other health problems that could impact teeth. The lining of the mouth may contain T-cells – they shouldn’t be there and can be a warning sign. The condition of the saliva should be checked. The mouth can be a barometer of health problems to come. He further indicated that if these conditions occurred before age 7, were recognized and the disease was confirmed, and a gluten free diet was begun promptly, these conditions would not be permanent. He recommended that when a celiacs see their dentist, they should make sure that the cleaning paste is gluten free. Also, check the tooth paste you use at home is gluten free.
Joanne summarized the presentation of Robert Mangione, Ed.D. R.Ph., of St. John’s University on the role of the pharmacist in the management of celiac disease. Even though the disease cannot now be treated with medication, the pharmacist still has a role. If the medication for a disease/disorder associated with celiac disease isn’t working, malabsorption may be involved and the pharmacist may be suspicious that celiac disease is the culprit. Once diagnosed, the dosage for a particular drug may need to be adjusted to avoid harm. He indicated that beyond food choices, patients must consider inactive ingredients found in drugs, vitamins and nutritional supplements. He recommended using the same pharmacist for all medications. Check with a drug’s manufacturer for information about gluten; check with a mail order provider as well. He further cautioned that as generic drugs become available, one can’t assume that the non-therapeutic parts of the formula are gluten free and should be checked.
Pat then presented information gained from Mary Collard, MS, RD, of the Scripps Nutrition and Metabolic Research Center. The question is - while a food may be gluten free, is it good for you? What’s missing nutritionally and how calorie dense is it? She cautioned about the vitamin, mineral and fiber deficiencies that commonly occur in some products. She reviewed the components of a balanced diet and stressed the value of certain food types as well as the value of home prepared cereals, bread, soups and simple meals. She identified areas to improve the value of meals prepared at home – use of grains; beans; nuts/seeds; starchy vegetables; cereals; whole grain breads; soups; the use of herbs and spices to add taste and variety. Improve your cooking skills; have the right equipment; and check out cookbooks covering the kinds of meals that will please you and your family. She had available a list of grains and nuts of value to celiacs
Pat further reported that on the last day of the Conference, Chef Robert Landolphi, Manager of Culinary Development at the University of Connecticut, spoke about the ways in which the University addresses the needs of its students. He is the author of 2 cooks books “Gluten Free Every Day” ad “Quick Fix Gluten Free”. They can be obtained on Amazon or through the CSA web site. He also demonstrated and had available for tasting four dishes –quinoa salad, chicken and vegetable curry and black bean brownies. They were delicious. Copies of the recipes from this session were available.
Thereafter the raffles were held followed by the meeting for the newly diagnosed.
