After a great lunch and a brain break, I was ready to listen to the
other presenters that were lined up for the day at the 26th Annual Celiac Conference at Nationwide Children's Hospital.
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.
The next speaker was Amy Jones, RD. He
presentation was title "Expect the Unexpected.
- 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
- 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.
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.