Posts tagged ‘health risks’

GREAT Kitchens Gluten-Free Chef’s Table Tour – Coming to a City Near You!

Alice BastThe National Foundation for Celiac Awareness (NFCA) is proud to call Chef Jehangir Mehta, a finalist on the popular Next Iron Chef series, a partner in creating safe gluten-free options in restaurants so people living with gluten-related disorders can eat without fear.

NFCA team members and Chef Mehta will be taking NFCA’s online gluten-free cooking program on the road over the next six months. Introducing the GREAT Kitchens Gluten-Free Chef’s Table Tour! The tour will cover 10 cities with the goal of educating chefs nationwide on the need for gluten-free menu items that go beyond just using gluten-free ingredients. It is amazing to see gluten-free options popping up on menus across the country, but unless restaurants are educated on the importance of safe gluten-free food preparation, our community cannot dine safely.

Many things have changed in the 20+ years that I have been diagnosed with celiac disease. When I was diagnosed, gluten-free food was not even available in the U.S. Today, we have access to a wide range of gluten-free food, but the next step on our journey is ensuring all gluten-free food is safe for our community. A gluten-free diet is the only treatment for people living with celiac disease; there are currently no pills, vaccines or cures for celiac disease. Research is taking us closer, but for now, we have to ensure the people living with this autoimmune disease can have access to the food that is our only medicine.

It has been 10 years since NFCA first opened its doors and set out on its mission to raise celiac disease awareness and improve the quality of life for those on a lifelong gluten-free diet. In that time, I have met many chefs and foodservice industry professionals eager to understand celiac disease, the gluten-free diet and our need for food to be free from gluten-containing ingredients and the gluten that can enter our food through cross-contact (commonly referred to as cross-contamination by the gluten-free community). These professionals are eager to accommodate their guests, but first they have to know training and resources are available to help.

NFCA’s GREAT Kitchens program gives restaurant employees from the wait staff to the chefs the tools they need to serve safe gluten-free food. Our ten city tour will help spread GREAT Kitchens logo the message that for the 3 million Americans living with celiac disease, a gluten-free diet is not a fad, but the only way to restore their health and reclaim their lives. Ranging from cities like New York, Chicago and San Francisco, we will be working with executive chefs in some of the best restaurants – complete with gluten-free cooking demonstrations, of course!

Stay tuned as we start the journey at Chef Mehta’s Tribeca restaurant, Mehtaphor on Tuesday, October 22.  Follow the tour by liking NFCA’s Facebook page and following NFCA on Twitter (@CeliacAwareness) and Instagram (@CeliacCentral).  Chef Mehta will also be live tweeting from the road.  Follow him at @jehangir_mehta.

To our GREAT health,
Alice

October 18, 2013 at 4:51 pm Leave a comment

Celiac Disease and Eating Disorders: My Story

As a professional in the field of patient advocacy, it is a natural fit to share personal insights and experiences that extend beyond the topic of celiac disease when given the right opportunity. So, during National Eating Disorders Awareness Week (NEDAwareness) I thought that I would join the country’s discussion of reducing the stigmas associated with disordered eating behaviors and body image issues.

According to the National Eating Disorders Association, an estimated 20 million women and 10 million men develop an eating disorder at some point in their life.  I am one of those 20 million women.

When I read that statistic, it is hard to wrap my head around the number of people living in discomfort and unhappiness with their bodies. After all, to quote Baz Lurhmann, who sang the infamous “Everybody’s Free (To Wear Sunscreen)” song adapted from Mary Schmich’s Chicago Tribune column, isn’t your body supposed to be “the greatest instrument you’ll ever own”?

As someone with a history of an eating disorder not otherwise specified (EDNOS), I found my diagnosis of celiac disease to be more than just a relief; it was incredibly apt, almost too coincidental of a solution. I could begin to heal my body through nutrition.

For years I lived in a fog where each day revolved around the same slew of preoccupations: food, exercise and weight. Almost immediately, my celiac disease diagnosis uprooted these thoughts and I began to view food as medicine, not the devil.

Perhaps my perspective is a sappy one. But for those living with celiac disease who still wrestle with the all-consuming preoccupations that only those with an eating disorder too often can understand, I gently encourage you to focus on the content and not the frame: it is possible to heal when food is your medicine.

To read more about celiac disease and eating disorders, check out this research recap.

You can also join the NEDAwareness conversation over on their website.

Questions? Comments? Please feel free to email me: kvoorhees@celiaccentral.org.

- Kristin

February 28, 2013 at 3:59 pm Leave a comment

3 Tips for Coping with a Celiac Disease Diagnosis

Recently, I posted this question on the National Foundation for Celiac Awareness (NFCA) Facebook page: Do you agree that people with celiac disease or non-celiac gluten sensitivity (NCGS) can feel excluded from social life?  I posted the question after seeing an article on Celiac.com from a gluten-free college student who feels like celiac disease can isolate her from social activities.

I was blown away by the response on Facebook.  Obviously, this is a hot topic.  As of now, there are 81 comments in a thread that’s still active.  It’s so interesting to see all of these comments.  Some people adamantly disagree that celiac disease impacts their social life while others struggle to stay included in activities and events.  There were lots of parents concerned for their young children with celiac disease and the implications it has on them socially, both now and in the future.  It appears that many people believe the impact of a celiac disease diagnosis directly correlates with your attitude about the diagnosis.  Positive attitude, positive life with celiac disease.

No matter which side of the fence you fall on, there’s no denying that celiac disease changes your life once you receive the diagnosis.  Here are my top 3 tips for coping with a diagnosis of celiac disease or NCGS:

Read. Then read more.

There is no better way to navigate the gluten-free diet than to learn and understand all the ins and outs of the lifestyle.  The more you know, the more you can keep yourself in good health.  Learn what gluten is, how it affects the body in people with a gluten-related disorder, where gluten can hide and how to prevent cross-contamination.  It might sound intimidating at first, but NFCA is here to help.  Browse www.CeliacCentral.org to get started.

Get support.

Do you know one of the great things about being gluten-free?  The online community is amazing!  There are so many advocates on the internet who can help with everything from delicious gluten-free recipes to lifestyle tips.  NFCA is always around to answer questions and provide resources on Facebook, Twitter and the new Celiac Central community on Inspire.com.  Check them out to connect with other people who are living gluten-free.

Get more support.

The gluten-free diet can be confusing at first.  There are a lot of gluten-containing products out there that you might be surprised to find out actually have gluten in them.  (I was probably most surprised to find out soy sauce and some chicken broths have gluten.)  With so many things to look for on a product’s ingredient label, it can be really frustrating at first.  I highly recommend seeking support from a registered dietitian that fully understands the gluten-free diet.  They’ll help set you up with the tools and knowledge you need to get started.

If you don’t have access to a dietitian (or even if you do), check out the book Gluten-Free Diet: A Comprehensive Resource Guide by Shelley Case, RD.  It’s one of the most helpful gluten-free resources available.

Feel free to comment with some of the difficulties you’ve faced after the diagnosis and how you’ve learned to overcome them.  You’ll certainly be helping out the newly diagnosed reading this post!

- Alicia

February 5, 2013 at 2:03 pm 4 comments

Meet Alicia: NFCA’s New Communications Assistant

Up until about a year ago, I had never heard of celiac disease.  I had heard of gluten, but never gave much thought to what it was.  I don’t have celiac disease and up until I started working at NFCA, I didn’t know anyone who had it either.

I heard about celiac disease for the first time while working in clinical trial advertising.   Since I knew nothing about the disease, I did some background research and found that people with the autoimmune disease couldn’t eat gluten.  Well that’s no big deal, I thought.  And then I kept reading.

I couldn’t believe gluten is in pretty much everything and the number of serious health risks it can cause for people with celiac disease and other gluten-related disorders.  The thought that people can get sick if a crouton falls on their salad was shocking. It didn’t take long until I felt a certain attachment to that project and the people we were trying to reach out to because of the life-altering effects of celiac disease.

For a while, I’ve known that I wanted to work at a nonprofit organization.  I always thought that nonprofits are where people are most passionate about their work and that’s exactly where I wanted to be.  I’m still learning a lot about celiac disease, but I’m excited to take on the challenge.  I never cease to be amazed by the powers of social media and there’s an amazing sense of togetherness in the online celiac and gluten-free community.  Between the website resources, knowledgeable bloggers, Tweet-ers, and Facebook-ers, there’s a wealth of information about gluten-related disorders to be shared.

I am truly looking forward to diving into this online group and sharing celiac and gluten-free resources from NFCA as well as learning more from this amazing community!

-       Alicia

June 8, 2012 at 10:00 am Leave a comment

Gluten-Free Party Etiquette

[Summer is quickly approaching, and your schedule is probably packed with barbecues, picnics and other social gatherings. We asked NFCA volunteer Annsley Klehr, owner of Gluten Freedoms, a gluten-free consulting company, to share her tips for managing those awkward moments when you're gluten-free at a gluten-filled party.]

A month or two ago I received an email from a neighbor asking me for a recipe for a gluten-free flourless chocolate cake.  I willingly obliged, noting in my email that I would be happy to advise her on certain brands and kitchen procedures to avoid cross-contamination.  She thanked me and that was that.

Fast forward several weeks, my family and I are invited to this neighbor’s daughter’s birthday party.  I have already briefed my daughter that she will not be able to eat the desserts there, so we brought a piece of chocolate for her.  We walk in the door to the rich aroma of Mediterranean style appetizers such as hummus, baba ganoush, chips, veggies, etc.  I happily allowed my daughter a few corn chips and veggies.

Annsley and Husband

Me and My Decoy

When it came time for dessert, I realized that my neighbor had asked me for the gluten-free flourless chocolate cake recipe so that she could make it for my daughter and myself.  I knew her household wasn’t gluten-free, so I could not be sure how she prepared the cake, what ingredients she used or if there was a risk of cross-contamination.  The host offered the cake (which was touching gluten-containing desserts) to me in front of all the guests, saying, “I made this especially for you.  It’s gluten-free.”  Then came the ice cream cones filled with chocolate mousse – both gluten-containing and gluten-free versions.  My first reaction was an overwhelming appreciation for such thoughtfulness, and then anxiety.

How could I tell her how much I appreciated all of this food and then NOT eat it?  There was nothing I could say to her but “Thank you.”

I felt so embarrassed by the whole situation I wanted to sink through the floor.  I wasn’t even worried about my 3 year-old daughter because no one would be looking at her for social graces.  I was sitting on the couch surrounded by guests, my daughter floating around the room and my husband at my feet.  I was handed a piece of chocolate cake and the gluten-free cone and I found myself profusely thanking my host for all of her efforts as my heart raced.  I knew I couldn’t eat any of it. The risk of cross-contamination and the thought of a gluten attack were too high. All of the sudden, a hand reached out in front of me, freeing my hand of my cone.  I looked up and all I could see was a mass of curls; it was my husband.  He readily bit into the cone without uttering a word.  I new I’d married him for a reason.  By eating the cake for me, my husband relieved me of a potentially uncomfortable situation!  (The chocolate cake I could conceal in a napkin in my hand).

These situations will always happen, and people living gluten-free have to be prepared.  Here are a few tips to help you navigate awkward social situations:

1.  Call Ahead

Call your host or hostess and let them know that you plan on attending, and that you will either come with your own supply of food or carefully vet all of their ingredients and thoroughly explain cooking procedures to avoid cross-contamination.  If you have a child attending the party, ask the host for the menu in advance so that you can plan to bring gluten-free substitutes.  If the party is being catered, call the catering company and speak with them directly.

2.  Stash a Snack 

Sometimes it may feel awkward to say anything or have a special plate.  In that case, make sure that you grab something to eat before or after the party and always have a snack, like a nut bar or piece of fruit in your bag.

3.  Be Your Gracious Self

As awkward as it may feel, saying “Please” and “Thank you” for foods you can’t eat are still greatly appreciated.  People have gone out of their way to make you feel comfortable, so in return, try to make them feel comfortable, too.  Parties are not the time to educate your hosts, so if you are presented with something that you can’t eat, accept it and express your thanks, then find a time to subtly dispose it or hand off to a friend.

4.  Bring a Decoy

Have someone or something you can swiftly pass your food off to without anyone noticing.  I often alert a friend going to the party with me of situations like these and ask if that friend might kindly take my portion so as not to offend anyone.

5.  Redirect Attention

If you’re looking to avoid drawing attention to what you’re eating or not eating at a party, then always try to have a drink or plate in your hand.  I find that having something on my plate helps to avoid questions and makes it easier to decline other foods.

Don’t let your anxiety prevent you from enjoying a party.  Keep to these few tips and you’ll have a good time no matter what situations you encounter!

- Annsley Klehr

May 30, 2012 at 9:51 am 13 comments

5 Beginner Tips for Dining Out Gluten-Free

[Lisa Garza blogs at Gluten Free Foodies, where she shares gluten-free recipes and restaurant reviews. She's even hosting an event on May 12 in Seattle for Celiac Awareness Month! We asked her to share some tips for first-time gluten-free diners.]

1. Do your homework before exploring a new restaurant.

Luckily, so many restaurants are providing menu information on their websites. If you do not see any mention of offering gluten-free on their menu, pick up the phone and call them. Make your voice heard by making the call. When you ask a restaurant if they offer gluten-free menu options, it creates awareness and drives them to learn more about celiac disease, non-celiac gluten sensitivity, and the needs this growing customer base has for good, healthy and safe gluten-free food.

French Fries

2. Ask to speak to the manager or chef.

Ask specific questions about ingredients.

  • Do they know what gluten-free food is?
  • Do they use a dedicated gluten-free fryer for their gluten-free French fries or corn tortillas and chips?
  • Do they use soy sauce? Soy sauce is used in all types of restaurants, not just Asian restaurants, so ask if they use it because it contains wheat gluten.

3. Be extra careful with certain menu items.

These dishes may contain hidden gluten:

  • Cheese and frozen foods like hash browns and french fries – these foods can contain gluten as an additive, or they may be cooked in the same fryer as gluten-containing foods.
  • Meats – Deli meats and pizza toppings like pepperoni can contain additives, including gluten. Ask if the brands they use are gluten-free.
  • Breads – Unless the restaurant specifically states that they are gluten-free, avoid any crusts, rolls, croutons or baked goods
  • Desserts – In addition to cake, pie and baked goods, gluten can also be in certain types of ice cream (either as an additive or a mix-in, i.e. cookie dough).
  • Sauces and salad dressings – It’s best to ask for oil and vinegar on the side of the salad.

Plate of Fresh Sushi

4. If you have a special event, always call ahead.

Make a reservation and let the staff know that you are gluten-free, along with any other dietary needs. Let them know it is a special celebration – birthday, anniversary, etc. and ask them ahead of time what you can expect to find on the menu.

Some restaurants will let you bring in a cake or dessert from an outside bakery if they do not offer gluten-free desserts. Make sure it is clearly marked with a sign “GLUTEN-FREE,” your name and contact information. Make sure the dessert is well wrapped or contained so they can store it in the cooler safely.

The staff at the restaurant will appreciate you taking the time to contact them prior to your special occasion so they can provide the best customer service possible. Developing a favorite chef relationship at your local restaurants will go a long way for future dining and celebrations.

5. Share your gluten-free experience with others.

Post a review on your favorite social media sites. This will help other gluten-free people find GREAT dining experiences and will also encourage more restaurants to create a safe gluten-free menu.

- Lisa Garza

May 3, 2012 at 9:56 am 1 comment

Hidden Gluten: 4 Places and 1 Resource to Watch

[When you first go gluten-free, you typically focus on the obvious foods like bread and pasta. But it's often hidden sources of gluten like soy sauce that throw you off course. We asked Shirley Braden of gluten free easily to share her tips on avoiding hidden gluten. Here they are, organized in 5 categories to help you stay safe!]

When The National Foundation for Celiac Awareness asked me to participate in this year’s May Celiac Awareness campaign, of course I said yes as I’m a huge fan of the NFCA and all its efforts. I said yes even though initially the subject matter didn’t excite me. Hidden sources of gluten. Yes, it’s a very important topic, but it’s one that’s not very exciting on the surface (no pun intended). However, not knowing where gluten can be hidden can give you major anxiety. There’s nothing as unfortunate as going merrily along and suddenly getting “glutened”!

The following are some frequent sources of hidden gluten … or sometimes not so much sources of hidden gluten as “overlooked”gluten. Note that the Food Allergen Labeling and Consumer Protection Act went into effect on January 2006, which ensured that wheat (as one of the eight major food allergens) must always be shown on applicable food product labels—either in the listing of ingredients themselves or after the ingredients list in a “CONTAINS:” statement. (Read more here.)

1. Grab-and-Go Foods

Candies ~ While there are many candies that are gluten free, many more contain gluten. Most folks are not surprised to learn that candies that contain cookie ingredients contain gluten, but they are surprised to learn that others like licorice (or similar; e.g., Twizzlers) contain wheat. Many other candies contain gluten in the form of barley for flavoring. Read labels and be wary of accepting or taking candy with no packaging.

Chips ~ Flavored potato chips (e.g., barbecued flavor, sour cream and onion) can contain gluten. Some new varieties of “whole grain” or “multi-grain” chips may also contain gluten. Don’t dip the chip without knowing that it’s gluten free!

“Formed” Products~ I asked my son for his input on products that contain hidden gluten and he said, “Anything that is mixed and then molded or shaped probably has gluten in it.” Great point. He talked about specific candies and some brands of beef jerky (for the latter, some brands also contain gluten via soy sauce for flavoring).

2. Cooking

Broth ~ The unsafe gluten ingredient that can be present in commercially prepared chicken broth, beef broth, or stock is usually wheat. Therefore, wheat will be shown on the ingredients label. Similarly, some chicken bouillon can contain gluten. Read the ingredients label.

Gluten-Free Label on Chicken Stock

Condiments~ There are many condiments that are gluten free, but sometimes gluten is used as a stabilizer and thickener, so read labels and do your due diligence. If you share a household with gluten consumers, it is imperative that separate condiments be maintained. It’s unrealistic to think that the members of your household who eat gluten will know or remember not to contaminate the mayo jar when they stick a knife inside the jar, spread mayo on bread, and then realize that they need more mayo. That same knife will go back in the mayo jar and the jar suddenly become cross contaminated and a source of gluten. Similarly, there are many who will touch the ketchup container right to the gluten-containing bun, bread, seasoned fries, etc. and the ketchup container then becomes a source of hidden gluten.

Kitchen Equipment
~ Toasters used for gluten-full bread, old pans and baking sheets, cutting boards, baking stones, and wooden utensils can all be sources of hidden gluten. (A black light that would show gluten would be so very handy, don’t you think?)

3. Eating Out

The opportunities for cross contamination are endless in restaurants, and even a gluten-free menu doesn’t guarantee a gluten-free meal. Every single individual must be fully trained on serving the gluten-free patron and keeping gluten-free ingredients/dishes free of gluten contamination. One poorly trained individual and/or one misstep is all it takes to provide an unsafe meal. But let’s focus instead on foods and dishes that may have hidden gluten in restaurants. The risk can also be greater when eating out because we don’t have ready access to ingredients listings.

Beverages~ This category includes non-alcoholic and alcoholic liquid refreshments. I was with a group of bloggers, most of whom were gluten free, at a food blogger conference a while back. During a break between sessions, we were sampling some of the vendors’ wares. We immediately asked if the beverages were gluten free. The answer was “Yes, these are.” What we didn’t pick up on was that there was an emphasis on the “these” and a specialized sweep of the company reps’ hands, indicating that only particular flavors of the brand were gluten free. We discovered this info after continuing to reading ingredients labels as we sipped.

That gluten can be present in tea also surprises folks. Barley is the usual source. Holiday and specialty teas are more frequent sources of gluten than basic teas. Special scrutiny should be paid to teas with name that include “gingerbread” and “sugar cookie,” as gluten is used to achieve that baked good taste. Similarly, flavored coffees can sometimes contain gluten.

The biggest concern for alcoholic beverages typically is beer. Unless it is made from special gluten-free ingredients and/or processed to be gluten free, beer is off limits. I’ve seen this news come as a shock to gluten-free newbies. The health care professional who diagnosed them had warned them about pasta, bread, crackers and baked goods, but had forgotten to mention beer.

Dressings, Marinades, Sauces, and Soups ~ I was very surprised to learn that an area restaurant’s homemade Caesar dressing contained soy sauce (which, of course, contained wheat). If I had not notified my waiter of my dining needs and he had not been well informed on the restaurant menu and ingredients, I might have been “glutened.” Others have found that soy sauce has been used in all types of dishes, and in decidedly non-Asian fare. Soy sauce is often used in marinades, and beer may sometimes be used as well. Sauces and soups are often thickened with wheat-based flour versus naturally gluten-free thickeners such as cornstarch, potato starch, and tapioca starch/flour.

Gluten-Free Label on Allegro Marinade

Egg Dishes ~ Some well-known chain restaurants add flour or pancake batter to scrambled eggs and omelets. One should always ask if either have been added when ordering egg dishes–even in the finest restaurants–just to be safe.

Salad ~ Of course, salad on its own is gluten free … lettuces and other salad greens, carrots, onions, tomatoes and the like are gluten free. However, many restaurants will make salad in a humongous bowl and then the wait staff will serve individual salads from that bowl. If the restaurant uses croutons in that bowl, you must ask for your salad to be made fresh, separately without croutons. (Note: If ever you receive a salad with croutons, or say a bread stick on top, hold on to it until the server replaces it, as restaurant staff have been known to simply pick out croutons or remove the bread stick.)

Water Used in Food Preparation~ Are you ordering steamed seafood? Does the restaurant use beer to steam to add special taste to its seafood offerings? If so, either you must abstain, or you must ask if the chef will steam your seafood in plain water in a separate, clean pot. (Do not assume on the latter.) Are you ordering steamed veggies for healthier fare? Be sure the restaurant doesn’t use the same water that it has used to boil its pasta in to also steam its veggies. This happens more often than you would think and not asking that question has gotten me “glutened” at least once.

Seafood Steamed in Beer on Menu

4. Non-Food Sources

Please don’t stop your vigilance at food sources; consider the following.

Art Supplies~ Numerous art supplies—like mainstream brands of play dough and finger paint—contain gluten. Heidi at Adventures of a Gluten-Free Mom has an excellent post on gluten-free art supplies here. As Heidi says, little ones are notorious for putting their hands in their mouths.

Makeup and Lotions ~ Choose lipstick and facial lotions (or any product that could wind up in your mouth) that are gluten free. Deciphering the ingredients on these labels is not easy, so select products that have simple ingredients like coconut oil and shea butter or shop from a product line that is entirely gluten free.

Medications and Supplements~ Gluten is also sometimes present in medications. I’m talking about prescription and over-the-counter drugs, and vitamins and supplements. Alice Bast, founder and president of NFCA, states “When you look at the word gluten, think glue. It is often used as a binder.” NFCA is in the midst of a two-part study on Gluten in Medications, which was funded by a $50,000 grant from the FDA.

Pet Food~ Unless you are purchasing grain-free pet food, it most likely does contain gluten. Make sure to wash your hands after handling any pet food. This issue may even be more of a concern for the gluten-free child touching the pet’s food dish and then his/her mouth, kissing the family pet, etc.

5. The Gluten-Free Watchdog

Those are just a few sources for hidden gluten, but I’d like to share another component of the hidden gluten equation. As most of you know, there are no current standards for a “gluten-free” label in place in the U.S. at this time. The Food and Drug Administration’s proposed standard from a few years ago remains at less than 20 parts per million (ppm). Final passage of this amount has not occurred; the latest data from the open comment period held months ago is still being evaluated. We also know that we are seeing more and more products labeled “gluten free.” Does that mean such products really are gluten free?

That’s what the Gluten Free Watchdog program is finding out. Founded and maintained by Tricia Thompson (The Gluten-Free Dietitian), the Gluten Free Watchdog program tests “gluten-free” products weekly.

Gluten-Free Watchdog

The most important thing to know is that while most of the products that the Gluten Free Watchdog has tested are gluten free to less than 5 ppm gluten, a handful of products have tested well above 20 ppm gluten. These findings point to the scariest sources of hidden gluten of all—the ones with “gluten free” labels that you believe are safe. Please take a moment to check out the Gluten Free Watchdog Alerts page to see which products have tested positive for gluten at 20 ppm or above. I have not seen this information shared enough with the gluten-free public and folks are still consuming these products and getting ill. (Note: Only subscribers get the product testing reports immediately with the specific testing results.)

Finally, do your best to “stay safe out there.” For staying safe and living gluten free easily (gfe), I’m a huge proponent of real food that is naturally gluten free. There is no hidden gluten in the products that are ready to eat “as is” (obviously, cooking will be needed in some cases). Think meat, seafood, fruit, vegetables, and dairy. As they come in their natural forms (without processing or “additives”), these foods are gluten free all day long!

- Shirley Braden

May 1, 2012 at 10:03 am 22 comments

Attending a Celiac Disease Patient Conference: Part 2

Last week, I gave you a wrap-up of the food and people I encountered at the Intestinal Immune-Based Inflammatory Diseases Symposium at Columbia University on March 2-3. While I had a fine time networking and meeting others in the gluten-free community, my main reason for attending was to hear from prominent celiac disease researchers. Needless to say, I was an attentive listener.

The Education

The sessions in the Patient Program covered everything from the basics of celiac disease to the latest research in therapeutics. Here are a few takeaways that perked my ears:

The No. 1 cause of poor response to a gluten-free diet is gluten exposure.

7-30% of patients with celiac disease reported continued symptoms on a gluten-free diet. The reasons can vary, from lactose intolerance to bacterial overgrowth to microscopic colitis. But as it turns out, most people simply aren’t following the gluten-free diet as diligently as they should, or they are ingesting gluten unknowingly. Another factor can be having the wrong diagnosis, so doctors stress the importance of confirming an individual’s celiac diagnosis. Which leads into the second point…

Columbia University Conference - Patient Session

1 room. 2 days. Lots of learning!

Reviewing biopsies is essential.

A few months ago, a study revealed that many gastroenterologists do not take a sufficient number of samples during a small intestinal biopsy. The presenter noted that several factors play a role in making a successful diagnosis: orientation, interpretation, number of biopsies and location. That means if too few biopsies are taken, or if the small intestine hasn’t been examined as thoroughly as it should be, it could affect the diagnosis that the pathologist makes.

Children are not little adults.

A proper celiac diagnosis is critical for child development. A child diagnosed with celiac disease early on will most likely grow to their full potential. A child diagnosed later in life may be permanently stunted from so many years of malabsorption. How exactly does this malabsorption affect their development? Iron deficiency can lead to poor concentration or irritability; calcium deficiency can lead to poor bone calcification and zinc deficiency can lead to growth failure and sexual immaturity.

There’s a lot to learn about the autism/gluten-free connection.

I was eager to hear Columbia’s presentation about the potential benefits of a gluten-free diet for those with autism spectrum disorders (ASD). It was the perfect build up to NFCA’s ADHD and autism webinar that took place the following day. While research thus far has been inconclusive, it appears that the gluten-free diet may help a subset of those with ASD. More research is needed to identify these subgroups and the specific proteins in gluten they’re reacting to.

Discovering risk factors is the No. 1 step to prevention.

There are a number of potential therapies currently being researched, and they each aim to accomplish one of three goals: Reduce exposure to gluten, reduce intestinal permeability or reduce immune activation. However, the question of how to prevent celiac disease remains. As healthcare turns from a model based on treating symptoms to one based on promoting wellness and prevention, we can expect this to be a focus. The answer lies in identifying more of the risk factors, because once researchers know what causes the disease, they can focus on ways to stop it.

- Cheryl

March 28, 2012 at 4:49 pm 2 comments

Gluten-Free Dining: We Don’t Really Want to Be “Special”

Last Monday, I decided to step away from my desk for a much needed day off. A mental vacation, a road trip to do a bit of shopping, and lunch with my best gal pal would be the perfect way to spend the day off! After stocking up on herbs and spices at Penzeys and checking out the furniture store sales, I met Kyle at her favorite restaurant.

Kyle and Beckee

Kyle and me

History Note: Kyle and I have been best friends since freshman year in college. People mistake us for sisters because we kind of look alike and think alike. We stood next to each other when we married our mates, and we birthed our babies exactly one week apart. When I was diagnosed with celiac disease, Kyle immediately learned about my diet, figured out how to feed me and threw a dinner party. Over the years, we’ve taken a few ‘girl trips’ where the days consisted of coffee on the patio, shopping, researching fabulous gluten-free dining spots, and ordering everything gluten-free so we could share plates. She is truly a GFBF (gluten-free best friend).

Lunch at the Biltmore

One of our previous "girl trips" - Lunch at the Biltmore

Kyle has been trying to coax me into dining at her favorite restaurant for years. It’s not that I hadn’t eaten there; in fact, I had dined there many times 20 years ago…BC (before celiac). I had not stepped foot inside since because they didn’t offer gluten-free options until recently, and I had been leery of dining there before important business trips or meetings for fear of possible cross-contamination. I just couldn’t take a chance.

So I decide, what the heck, it was close by and they have dynamite salads. How can they screw up a salad, right? Plus, it’s a Monday and surely they won’t be that busy. Plus, Kyle knows the owner/chef and staff well, and I was curious about their gluten-free menu.

I arrive to a packed room. Kyle waves to me from the bar where we plan to sit. After hugs and catching up, we ask for menus. Kyle asks for the gluten-free menu before I do…she’s so excited. We wait.

Eventually, the bartender comes back and spouts off the daily specials. We ask for the gluten-free menu again. He turns away, digs under a pile of menus, and puts it in front of me. Laminated and single-sided, it lists about ten choices. Salads and entrees were listed with instructions about what to leave off the dish. No prices, no restaurant logo, no description of the dish, no GREAT Kitchens seal either, but I knew that wasn’t going to be there – they haven’t gone through our gluten-free training.

I had a bad feeling. It was a busy lunch, I could see the kitchen staff hustling, and I had a gluten-free menu that didn’t really give me much guidance or confidence in the outcome.

Kyle looks at my menu and offers hers with colorful descriptions and prices to help me choose a few options to investigate. She waves over the owner, asks me to dig out a business card, and makes an introduction. (Kyle is extremely proud of me. She’s the one who gave me confidence and support to start a gluten-free consulting business 5 years ago, which lead to my dream job with NFCA.) With a smile, she hands him the card and says, “This is my dear friend who works for the National Foundation for Celiac Awareness. She is the director of a program called GREAT Kitchens.” The owner took a look at my card and replied, “So, am I under investigation?”

Was he kidding? He didn’t look like he was kidding. Did he need to be investigated? We laugh it off, and I ask for some help choosing lunch. The tortilla strips on the salad are fried in the same oil as breaded foods, but the menu doesn’t mention it. The grill does not have bread products cooked on it – good news. The salad dressing ingredients…I can tell by his face he isn’t really interested in sharing the recipe. I order the grilled salmon salad with vinegar and oil on the side. I notice the owner pop his head into the kitchen to possibly alert the staff.

Our salads arrive in front of us. They are fine. We eat. We pay the bill. We leave. Hugs and back on the road.

Driving home, I just felt terrible. I had an hour to stew over what had just happened. I wanted to cry because I just felt awful. My food was fine. No cross-contamination, the salmon was perfectly cooked, the greens were fresh. But I still felt horrible, empty inside. I had just been to a well-known restaurant that many people would give a four star rating for exceptional service, food quality and ambience. Not so much for me…maybe a half a star for their gluten-free guests.

The next morning Kyle called and said, “Have you ever been treated so poorly in all your life? I can’t believe how rudely we were treated. And that menu, how could you call it a gluten-free menu with nothing to help you make good choices? I’ve been getting madder by the minute thinking about it.”

Unfortunately, this wasn’t my first time dealing with restaurants that offer gluten-free options/menus to keep up with the trends but don’t really understand the customer. This past year, restaurants offering gluten-free options rose 61% according to foodservice consulting firm Technomic. Gluten-free guests have made progress in getting the attention of the restaurant industry by requesting options. But we have a long way to go to make sure they understand that special diet customers don’t really want to be special. They want to know that their food is safe and that their needs are understood. They just want to enjoy their lunch with a friend.

- Beckee

Learn more about NFCA’s gluten-free restaurant training program: GREAT Kitchens

February 28, 2012 at 10:49 am 7 comments

Inquiring Minds Want To Know!

Some days, it seems that surveys are everywhere.  We are surrounded by a knowledge gap that surveys are meant to fill allowing all of us to move ahead to a better world. Some seem immensely trivial and others of grave importance.

Over the past few weeks, I have been involved in the world of surveys. Specifically, I have been working on a survey targeting anyone and everyone who is gluten-free. The point is to find out what experiences the survey taker has had with medication. By that, I mean medication of all sorts—prescription, over-the-counter, supplements, the works.

Yes, this survey is part of NFCA’s work on the U.S. Food and Drug Administration (FDA) grant to study Gluten in Medications.  We have written about this study on our CeliacCentral.org website, in our newsletter and more.

Take the Gluten in Medications Survey

Right now, we are engaged in making sure that the distribution of this survey is as broad as possible so that we certainly gather as much insight as we can. The more responses we get, the more information we will have and, therefore, the more drugs we can test for gluten content and the more targeted that testing can be to reap the best, most noteworthy and effective  results.

And, yes, this survey falls into the “gravely important” category.

So, I have been poring over lists of groups that are good candidates to distribute the survey. The NFCA staff has been sending out email notices about the survey like crazy and, then, regrouping to expand and improve our communications plan.

We know how important this research is to all who are gluten-free and who want to be certain that, in the process of trying to get well or stay healthy, they are not sideswiped into illness inadvertently.  Whether someone takes one pill a day or 16, that individual doesn’t know how much gluten, if any, she is absorbing.

We also know that pharmacists are eager to help their patients. They need to know what is in the medication they are dispensing. People ask them questions; they want to know the answers. NFCA’s GREAT Pharmacists online training program is one way that we are moving the ball along that learning curve. This survey and the research that comes out of it will advance the Gluten in Medications program in a positive fashion.

So, back to the lists.  This is a one-in-a-million chance to get it right!

- Nancy

January 17, 2012 at 8:58 am 2 comments

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