Sat. July 9, 2005
Jessica Kidd spoke to the group about traveling gluten free. A complete set of her notes is available in the chapter library—this is just a brief summary of the discussion.

Traveling gluten-free is possible with a little advance planning. Supplies that you might want to take on every trip are any over-the-counter drugs you take that you know are gluten free, a list of gluten-free prescriptions in case you need something while you’re gone, gluten-free insect repellent, and single packs of hand wipes (Wet Ones are GF). No matter the mode of transportation or destination, you’ll want to carry some gluten-free snacks with you, and possibly some instant meals. It is helpful to have a note from your doctor explaining that you are celiac and require a medically prescribed gluten-free diet. When packing gluten-free food in your luggage, use zip-top plastic bags so that anyone inspecting your luggage doesn’t contaminate your food, and label your food as “medical supplies.” You can ship a box of food to your destination to avoid having to tote it with you.

When visiting friends and family, explain your special needs and offer to cook your own food. Providing yourself with your own hand towel is also a good idea. You can even bring toaster bags that can be used to toast your own bread in a contaminated toaster. Similarly, in fine hotels and restaurants, discuss your needs with the chef. Some hotels may provide you with a small refrigerator.

Traveling abroad requires some special considerations. Any international traveler will want to consult with a travel doctor about vaccines and water safety. (The CDC maintains information about which country has safe drinking water.) Check with the consulate or embassy of the country you are visiting to get permission for prescription medications and to check on rules about what kind of food you are permitted to bring with you. Many European countries are enlightened about celiac disease and know about the gluten-free diet. Be aware, however, that in Europe the label “gluten-free” is not a zero-tolerance indicator. Also, use the word “maize” to indicate that corn is okay in your diet, since the European usage of the word “corn” can include any kind of grain. There are several sources for gluten-free dining cards in multiple languages. Take several copies with you, and make sure that the card says that food should be prepared with clean pans, gloves, utensils, and hands.

Recommended resources include, “Waiter, Is There Wheat in My Soup?” by LynnRae Ries, which lists restaurants by location and also by type of food, and “Against the Grain” by Jax Peters Lowell, which has travel and dining tips, as well as GF dining cards in several languages. Also recommended was checking on a St. John’s University celiac listserve to get information about certain locations (but be careful because if you join the listserve you might get up to 100 emails in a day). The website www.clanthompson.com has gluten-free food and drug guides that can be put on a PDA (such as a Palm Pilot).

The meeting concluded with a call for volunteers to staff tables at several health fairs, and snacks from Outside the Breadbox.

Sat. June 11, 2005

Sat. May 14, 2005
John Himberger spoke on bone disease and its relation to celiac disease. What follows here is a very brief description of the discussion—a set of slides and video of the meeting is available through our CSA-PPC Library. John started by describing celiac disease and how it affects digestion and absorption. He then described normal bone development and function, and went on to talk about the many kinds of bone disease. Osteopenia and osteoporosis was the focus of the rest of the discussion. People can have a variety of risk factors for osteoporosis; the ones most relevant to celiacs are low lifetime calcium intake, vitamin D deficiency, and presence of certain chronic medical conditions (such as celiac disease). Women are 4 times as likely as men to have osteoporosis. Bone health is most often measured by a DEXA (Dual Energy X-ray Absorptiometry), or bone mineral density, test, which imparts less radiation than a chest X-ray. Treatment options for osteoporosis include calcium and vitamin D supplements, estrogen or testosterone supplements, medications such as Fosomax and Actonal, and weight-bearing exercise. Studies on celiacs have shown bone loss or failure to develop normal bone mass as early as age 6, and that celiacs respond more slowly to diet and medication to reverse bone loss than non-celiacs. The meeting wrapped up with a question and answer session with John, and then snacks. The Hastys brought cookies and crackers from Outside the Breadbox, and Ginger Ludwig brought spice cake and brownies made from Namaste mixes, sent to her by the company for her to bring to the meeting.

Sat. April 9, 2005
Members of the group met for lunch at Mirch Masala (at the intersection of North Academy and Union). We enjoyed a buffet of Indian food, with the gluten-free items clearly marked. A complete list of which menu items are normally gluten-free was distributed. On important note, if you wish to order off the menu, do not order any items that are prepared in the tandoon oven since the breads are prepared in the same oven.

Sat. March 12, 2005
For the March 12 meeting, Dr. Scott Lewey, from Gastroenterology Associates of Colorado Springs, spoke to the group about celiac disease, including its history, diagnosis, treatment, and future directions. He started with a brief review of what exactly happens to damage the small intestine in celiac disease, and the history of medical knowledge about the disease. He went on to discuss symptoms and diagnosis of celiac sprue, discussing the specific blood tests and the importance of an intestinal biopsy. The key elements in managing celiac sprue were mentioned, to include a lifelong gluten free diet, vitamin and mineral supplements, and advocacy groups. Future directions of celiac research include finding an animal model for research, finding factors involved in inducing celiac in susceptible individuals, working with food and pharmaceutical companies to develop a good definition of “gluten-free,” and non-invasive testing. To demonstrate the noninvasive testing, Dr. Lewey brought a wireless capsule that can be swallowed by the patient and has its own power source, light, camera, and wireless signal that can be sent to a clinician to view the inside of a person’s digestive system.

The meeting concluded with Q & A with Dr. Lewey and snacks from Outside the Breadbox.

Sat. February 12, 2005
The Feb 12 meeting was an open discussion of celiac disease and the gluten free lifestyle. Many issues were addressed, including specific food product recommendations, cross-contamination with gluten-containing products, book recommendations, and diagnosis, treatment, and continued medical testing. The following is a summary of the discussion, organized more by topic than chronologically.

Members reported a variety of paths to diagnosis of celiac disease. These included anemia, osteoporosis, and inflamed liver, in addition to the usual suspects of itchy rashes and rapid weight loss. One even learned about celiac disease by reading an article in the newspaper—publicity helps!

Several members noted that in addition to celiac disease, it is possible to have other food allergies or intolerances. These additional allergies don’t cause the intestinal damage that celiac causes, but can make buying appropriate food more challenging. It takes most celiacs 6-8 months of the gluten-free diet to have full intestinal healing, and may take as long as 18 months depending on age and extent of the damage. A small minority of celiacs (approximately 3%) have refractory sprue, where after a year of remaining gluten-free, they are not feeling better. If that happens, the GI doctor has to be consulted to test for additional problems. All celiacs should have yearly blood tests done to confirm that the antibody levels are indeed falling (Laura recommended that if you have just one test done, that it be the TTG).

Being gluten-free involves avoiding wheat, barley, rye, and oats (more on oats later) and also a variety of other grains—spelt was mentioned specifically as a grain to avoid. There was a lot of discussion about “controversial” items such as skin, hair, and housecleaning products, wheat grass, barley grass, and sprouted grains, distilled vinegar, and food items (such as Lay’s chips) that are manufactured in a wheat-containing plant. For individuals with dermatitis hepataformis, skin contact with wheat-containing products is clearly hazardous (one particular example mentioned was the wheat germ oil in Eucerin lotion). For celiacs, the main concern with skin, hair, or cleaning products is accidental ingestion, which can happen if a lotion or other product is on the hands and then trace amounts get consumed, but many members avoid any wheat-containing products altogether, regardless of whether ingestion is a concern. The consensus was that wheat grass and barley grass should be avoided due to the risk of cross-contamination in the harvesting of such items. Different celiac groups have differing opinions about whether distilled vinegar is safe, but many members of the group consume it (in Wish Bone salad dressings, for example). Products that have potential for cross-contamination include anything manufactured on the same product lines as gluten products. Again, many members eat Lay’s products (which have a potential for cross-contamination), and several were very happy to learn that the ingredients in Cheetos are gluten-free. The bottom line with cross-contamination issues is that each individual should make his or her own decision about personal comfort level with potential contamination.

There was a brief discussion about oats. Oats by themselves don’t contain the gliadin molecule that causes the immune response in celiacs, but there is a large potential for cross-contamination from the point of harvest to the manufacturing and packaging facilities. It was recommended that celiacs who want to eat oats do so only under the direct supervision of a physician, with regular bloodwork every 2-4 weeks to see if it is causing an autoimmune response.

Communion was also mentioned. For Catholic celiacs, there are communion wafers that have an exceptionally low level of gluten in them and are considered safe by most experts. Information about them was in the last newsletter. For others, Ener-G foods manufactures rice communion wafers that are entirely gluten free.

Books that were recommended throughout discussions include cookbooks by Bette Hagman or Carol Fenster, specifically Gluten-Free 101 by Fenster, Wheat Free, Worry Free and Kids with Celiac Disease by Danna Korn, Waiter, is there Wheat in my Soup? by LynnRae Ries, Fabulous & Flourless, by Mary Wachtel Mauksch, and the Food Allergy Field Guide, by Theresa Willingham, which is especially helpful for those with additional food allergies. The chapter library also has many cookbooks available for one-month checkout—it is requested that you not photocopy a lot of the book, but instead use this as a guide for deciding which books to purchase, so that the authors and publishers of these wonderful books can receive the profits and be encouraged to write more. The library also has a book that lists gluten-free medicines, which is updated yearly. This book is not available for checkout but is at every meeting, so you may look up your particular medicines and follow up with a call to the manufacturer to ensure that they are still gluten free. The online magazine glutenfreeda.com is a source of recipes and information also.

There was a long discussion about avoiding cross-contamination in homes that have both gluten and non-gluten products, which represents the majority of celiac households. The emphasis is to make it a gentle routine (not a burden) to avoid cross-contamination. Suggestions were to keep separate sponges for gluten and non-gluten cleanups and use paper towels to clean so that crumbs will be thrown away (instead of spread by a contaminated washcloth). Pet food is a potential source of gluten. Very young children are more likely to contaminate their family members with gluten just because they haven’t learned everything yet, but some reported that their kids were very good about thinking about cross-contamination.

Other miscellaneous comments included: well-controlled celiac disease is not life-threatening, so it’s better than some other problems (diabetes, for example). This helps us put the lifestyle into perspective. The time between gluten ingestion and reaction differs from person to person, and can be anywhere from a few minutes to 48 hours. PF Chang’s now has a gluten-free beer (this made Steve dance). If you want to research a particular kind of food, Water to Go in Castle Rock will do some research for you. Tinkyada pasta is wonderful. Kraft, ConAgra, and General Mills claim that any gluten ingredients are on their label. GeniSoy Chunky Peanut Butter Fudge protein bar is gluten free. The Denver CSA chapter will have a new product guide in May 2005. There are bed and breakfast locations in both Manitou and Durango that will provide gluten-free food. Gluten-free foods are tax-deductible as a medical expense—you can deduct the difference between the GF product and regular product plus the mileage from your regular grocery store to the specialty store.

Two lingering unanswered questions were whether there are good high fiber low carb veggie-burger substitutes, and if there is a substitute for oats that has the same cholesterol-lowering properties as oats do. Answers to these questions would be welcomed by the chapter members.

Finally, Rick and Pam Hasty brought some of the newest product from Outside the Breadbox—GF bagels in a variety of flavors. Yum!

Sat. January 8, 2005

Sat. December 11, 2004
Our annual Holiday Dessert Exchange was held on December 11, 2004. Chapter Leader Laura Himberger was absent so Marie Pizzolatto led this meeting. Marie gave the group an introduction to the new 16 page booklet she is preparing for new celiacs.

There was an open discussion amongst the group on ideas that should be included in the booklet. Some very useful information was shared that should be included in the guide to help people just recently diagnosed with celiac.

Leadership elections will be held at the January meeting. Marie talked about the need for volunteers including a replacement for Laura, who is at the end of her 2 year term.

There were many delicious recipes brought for the cookie exchange. Everyone got to take home some of the goodies and exchange recipes.

Sat. November 13, 2004
On November 13th, 2004, we had Cindy Draving, MS, RD, visit with us and speak to us about nutrition. She discussed the basic Dietary Guidelines and goals for maintaining a healthy lifestyle.

She stressed that this can be accomplished even for those of us with dietary restrictions like Gluten-Intolerance. She provided some ideas to help make the Holidays more enjoyable and normal. She also provided helpful tips towards weight loss. It was a very informative and encouraging discussion.

We also discussed the upcoming elections for the next year. Several positions still needed to be filled.

Sat. October 10, 2004
On October 10th, 2004, the newly opened Wild Oats on Powers Blvd hosted a free sampling of several gluten free items available at the deli and store-brand products.

They provided healthy eating guides for children to color and a gluten free product guide of items carried in the store.

A video was shown of Danna Korn giving an expananation of celiac disease and what "gluten free" means. This video is shown to all Wild Oats employees who are then tested on the contents of the video.

Some of the store-brand items offered were W.O. mini-chocolate chip cookies and a variety of W.O. seasoned potato chips. From the deli, we were offered grilled salmon and severl vegetable dishes: