MI Gluten Free Gal: 26th Annual Celiac Conference: Post-lunch Presentations

The first post-lunch presenter was Anne Roland Lee, RD. Her presentation was titled "The Gluten Free Diet- is there for cause for concern?"

Anne works for the Schar Company, and is a wealth of knowledge. Anne's biggest concern is the nutritional deficiencies that are present in those following a gluten free diet. She reviewed the differences between a regular diet and a gluten free diet, as well as trying to get attendees to focus on the foods that are naturally gluten free.
She presented findings showing that 56% of a study group had nutritional deficiencies, including low homocysteine and folate levels.
She presented "alternative grains" and how to use them, such as buckwheat, amaranth, quinoa, teff and millet, as well as baking with bean flours. She suggested adding these grains slowly as you start to get used to them. For example, in place of one cup of rice, use 1/3 cup of quinoa and 2/3 cup of rice, gradually increasing the new grains as you adjust your diet.
She did exercise a word of caution though in regards to these alternate grains and their flours. Some of these products are not processed in facilities that prevent cross contamination. A study showed 33% of tested "gluten free grains" were highly cross-contaminated. When buying flours, be sure to by them from a source that is certified gluten free. One soy flour had a gluten level of 3,000 parts per million!
Another part of Anne's presentation was how to dine out while on a gluten free diet. When dining out, as for a gluten free menu, as well as check into restaurants that are part of the Gluten Free Restaurant Awareness Program. Always ask to speak to the chef and explain your dietary needs- be specific! Explain cross-contamination and explain how sick you may get. If needed, tell them that you want your food served "naked," no spices, no sauces, no marinades- nothing extra.
In regards to travel she suggested checking out Bob and Ruth's GF travel service, as well as websites like Find Me Gluten Free and Gluten Free Roads, and to contact support groups in the area where you will be traveling. Plan ahead and take snacks with you. MOST IMPORTANTLY- your gluten free diet is your medicine! Before leaving, get your doctor to write you a note, ON THEIR PRESCRIPTION pad, stating that you need to follow a gluten free diet. This will allow you carry extra food on planes and will make things easier for you. Also, Disney has a Gluten Free Dining App that is worth checking into.

She started off by suggesting that you have a file of your medical health information and to make sure other family members have a copy. This needs to include not only the fact that you follow a gluten free diet, but also the symptoms you experience while on the diet.
If you know in advance that you will have an extended stay in the hospital, feel free to bring food with you, but they ask that you check it in with the hospital staff first. Also, she suggested including wheat, rye, barley and oats in your allergen information. She stated that this alerts multiple personnel to you needs- simply stating that you need a gluten free diet only alerts the kitchen staff. She also suggested that you request an allergy wristband, and to have the dietitian put you on their list of "nutritional risk." This will put you on their radar and make them more likely to pay specific attention to your menu.
She highlighted three people to be sure to talk to when preparing to go to the hospital- the food service director who runs the kitchen, the registered dietitian who approves your meals, and the care coordinator who facilitates discharges and transfers to other facilities.
Other than hospital emergencies, she also stated that celiacs need to be prepared for natural disasters. She (and FEMA) suggests have a 3 day non-perishable supply of food and plenty of water. (One gallon of water per person per day) Keep this in a higher location, off of the floor in case of flooding, and be sure to swap out the food every 3-4 months. She stated that FEMA cannot possibly accommodate our special diet needs and this is where it becomes important for celiac communities to step up in times of disaster to help out those in need.
Amy discussed inadvertent lactose intolerance. Many people have "secondary" lactose intolerance after first being diagnosed, as the part of the gut that processes lactose has still not healed and repaired itself yet. She also stated that eating yogurt with "good bacteria" helps to break down the lactose sugars.
Amy also elaborated more on FODMAP intolerances. To summarize again, FODMAP stands for Fermentable Oligo Disaccharides, Monosaccharides And Polyols. The short chain carbohydrates are extremely fermentable and can cause painful gas and bloating. She suggested the website www.ibsfree.net and the blog at www.katescarla.com for more information.
She finished her talk about celiacs gaining weight. Weight gain is due in part to better absorption and healing of the gut and portion distortion. She suggested keeping a food diary and using smaller plates. Keep pre-packaged items to a minimum. For instance, if you didn't eat brownies, cookies and candies all the time before being diagnosed, why would you start eating them all the time now?

The last presenter that I saw was Mary Kay Sharrett, RD. Her presentation was about the new FDA Gluten-Free Labeling Guidelines.

The guidelines were published on August 5, 2013 and full compliance will need to be met by August 5, 2014. This ruling is a result of a directive from the Food Allergen Labeling and Consumer Act of 2004, or FALCPA. Before now, there had been no set definition of what made a product "gluten free." While gluten is being defined as being in grains of wheat, rye, barley and crossbred verifies, oats are not considered to be a gluten containing grain and do not have to be certified gluten free to be labeled gluten free. They DO still have to be tested at less than 20 ppm if the gluten free claim is used.
Please be aware that this is an FDA ruling. The USDA has stated that they are not consistently following this yet, and they regulate meat, poultry, and eggs. (Shelled egg products are regulated by the FDA.) In regards to label reading for FDA regulated foods, look for these 6 words: Wheat, Rye, Oats, Barley, Malt, and Brewer’s Yeast. (Brewer’s Yeast is the remaining yeast from after beer has been brewed.) When looking for products that may contain gluten in foods regulated by the USDA, pay attention to words such as dextrin, modified food starch and starch. If the label says it is gluten fee or declares allergens, then they are following the FALCPA guidelines and you should be safe.
Please note that there are many "may contain" statements on products. Companies are not required to state whether allergens in their facility that may cause cross-contamination.
Also, putting a gluten-free label on a product is also voluntary. If they do place this label on their product, it MUST test less than 20 parts per million. If it is more than 20 PPM, it will be considered "misbranded." The FDA ruling does not apply to cosmetics, alcohol & tobacco, agriculture, pharmaceuticals and dog food.
Some people have been concerned that 20 pm is too high, and that it should be at 0 ppm. Unfortunately, this is simply not possible, as tests are not sensitive enough to test at that level. The FDA and other reputable organizations in other countries have agreed that this is the most reliable level that can be tested. Also, there is currently no evidence that consumers with celiac disease consuming products with less than 20 ppm are at risk for adverse effects. Lowering the test below 20 ppm could be very cost prohibitive for companies looking to start gluten free businesses and would severely limit the foods that could be manufactured and labeled as gluten free. Again, this level can be trusted. The Gluten Free Watchdog tested almost 300 products, and 91% of these products tested were less than 5 pm.
There is one area of concern that we need to be vigilant on. Products can claim “made with no gluten containing ingredients” or “not made with gluten-containing ingredients” but be contaminated over 20 ppm and not be in violation of gluten-free labeling laws, if they do not have a gluten-free claim on them. (Taken fromglutenfreeliving.com) There are also still concerns about products that have been made with gluten containing ingredients and have been "Hydrolyzed" to have the protein "stripped," as the FDA is not sure that this can be accurately tested for yet.
In regards to enforcing the law, the FDA says it will “use gluten testing of samples when needed.” A consumer complaint about a food is one reason testing might be used. The FDA will also enforce the regulations through “periodic inspections of food manufacturing facilities; food label reviews; follow-up on consumer and industry complaints reported to the agency.” (Taken fromglutenfreeliving.com)
Our best line of defense may be intentionally buying products that are certified gluten free and bearing a label. GIG & NFCA (>10ppm) and CSA (>5ppm) all have certification programs.
Mary Kay did take questions at the end of her session and stated that maltodextrin is gluten free and modified food starch, IF ON A FOOD REGULATED BY THE FDA, is gluten free.