Archive for October, 2012
Last week, I received an email from Benny Solomon, the founder of celiac and gluten-free resource website called OnTrackCeliac. The website is still in its infancy, but the goal is to include restaurant listings, product recommendations and other tools for living gluten-free. Nothing out of the ordinary, but here’s what caught my attention: Benny is only 14 years old.
After reading Benny’s email, I just had to find out how a teenager decided to shelve some of his social time and spend it developing a gluten-free resource.
NFCA: What inspired you to start OnTrackCeliac?
Benny Solomon: I was diagnosed with celiac disease in late 2009, and immediately switched to a completely gluten-free diet. Within days, I noticed that many people knew what eating gluten-free was, but had no knowledge of cross-contamination. I did not feel comfortable eating out and not knowing what was happening in the restaurant’s kitchen. I realized that most places did not fully understand celiac disease.
For about a year and a half, I refused to go to more than about four different restaurants that I felt comfortable in, simply because I didn’t know which ones I could trust. It was at this time that I realized that those with celiac needed a place to go to be sure that there was no need to worry.
Many websites have huge, outdated lists of restaurants with gluten-free menus. If you were to go to about half of the restaurants on those lists, you would find that most of the staff has no familiarity with celiac. People with celiac disease needed a place to find gluten-free options that were reliable and where they did not have to worry about cross-contamination. In February of 2011, I started OnTrackCeliac to satisfy this need.
NFCA: Why did you decide to do a restaurant and food finder?
BS: I wanted to work with restaurants and foods since they are the base of starting a gluten-free diet. My plan was to develop more resources around these two categories over time.
This was not my first time making a website or app, but it was the first time that I seriously took on a technology-related task. For a few years I worked on a few iPhone games, and later I ran a small website that featured “the best videos on YouTube.” OnTrackCeliac truly felt like an idea where I could apply my computer experience to something I am passionate about.
NFCA: How do you choose the restaurants that you feature?
BS: My policy is that any restaurant that is safe for people with celiac disease should be listed on OnTrackCeliac. I don’t exclude any restaurants for quality of the food, or any other reasons. I try to provide as many options for restaurants as possible, as there are very few that have a strong knowledge of celiac. Although the main focus is on gluten-free safety, I will be starting a new star system, so that restaurants that have exceptional food and go above and beyond expectations will be recognized.
NFCA: How do you create your list of gluten-free foods on the website?
BS: When creating a list of gluten-free foods, I generally start by exploring the company’s website. I try and ask myself if the company looks reliable, and if they are promoting gluten-free foods. If they actively publish a list of gluten-free foods, that becomes a strong indicator of the company’s reliability. If not, I generally call companies to find out if they have a list of gluten-free foods, but do not publish it online.
The company must show significant knowledge to pass the test and make it onto the site, and if they do not have any apparent efforts for showing which products have gluten and which do not, they do not make the cut.
NFCA: How do you juggle this project with school and other activities?
BS: Working OnTrackCeliac development into my schedule is certainly difficult. I generally don’t work on the site every day (after homework is done); instead, I find that I work best when a large chunk of time is available. On a break from school, for example, I sometimes sit down and work on the website for 3-4 hours a day. I do give OnTrackCeliac a quick check every day though, just to make sure nothing has gone wrong, and that everything is working smoothly.
NFCA: Some people get discouraged about having to live gluten-free. You seem to have a passion for it. How do you stay so positive?
BS: I have mixed feelings towards having celiac disease. At times, I like having it, because it gives me something that I feel is unique to me in the way that I deal with it. At other times, I do experience frustration, such as on trips and when I go to a restaurant at a last minute’s notice. The way that I stay so positive is by knowing that OnTrackCeliac helps other people. By encouraging people to stay informed about celiac, we can only encourage progress for the future.
For the first year I worried about having celiac, but realized that worrying wasn’t getting me anywhere. By educating others, I hope that someday celiac will not be a burden at all on my lifestyle, and I am motivated to teach others to have the same outlook on eating gluten-free.
NFCA: What advice do you have for teens who feel tempted to cheat on their gluten-free diet?
BS: To any teens with celiac that want to cheat, I would say it’s simply not worth it. After having spent the first part of my life eating gluten without knowledge of celiac, I can assure anyone that the best substitutes for gluten-free are just as good as regular food. The trick is you have to find the best (I cannot stress that enough) brands. For example, there are hundreds of gluten-free breads out there, but in my opinion, only about two of the brands taste like “normal.”
Cheating might not initially seem like a big deal, but the long-term consequences are extremely serious. There is nothing to gain from eating gluten. Set a goal for yourself to not eat gluten, and reward yourself when you reach points along the timeline (but not with eating gluten!). If you ever need advice on the best foods, check out OnTrackCeliac’s food page!
NFCA: Is OnTrackCeliac something you’d like to turn into a career?
BS: At this point in development, I hope for OnTrackCeliac to become even more of a resource for people with celiac disease. I would like my career to be somewhere along the lines of what my website strives to accomplish, but I just can’t predict what lies ahead. I hope that OnTrackCeliac has a long future, and I want people to have the mindset that it encourages: To embrace celiac, find reliable ways to live your gluten-free life, and educate others.
The following is a guest post by Dhanu Thiyagarajan, a sophomore at University of Pittsburgh and founder of Gluten Free My Campus, the university’s gluten-free student group. Dhanu is studying bioengineering and hopes to go to medical school to become an OB/GYN doctor. She has been gluten-free since December 2010.
Applying to college is a hard decision on its own, but it’s even harder being a college student on a gluten-free diet. These are five things that I found to be really important regarding the gluten-free diet when applying to colleges.
- On-Campus DiningThe dining halls and areas on campus should have safe gluten-free options available for you. It is very important to know that those who are cooking your food know how important it is to avoid cross-contamination. If the college can’t offer this for you, make sure you can cancel your meal plan.
- Student Health CenterTalking to the dietitian is helpful, so they can help with your diet and can inform you accordingly of any updates regarding the gluten-free options on your campus. Make sure the health center accepts your insurance and can help you in case you get sick from accidental gluten ingestion or in general.
- Living in a DormIt is good to know what appliances are allowed in your dorm room. A fridge with a freezer is your best friend!
- Campus SupportHaving a gluten-free club on campus is wonderful because you know there is support on campus, and people to help you with this adjustment. Also, knowing if there is a decent amount of people on a gluten-free diet will allow you to be more confident that gluten-free living there is possible.
- Off-campus restaurantsSocializing with friends is a huge part of a college lifestyle and a lot of that is done during meals. It is good to make sure that there are restaurants around where you can go, eat and socialize safely.
Different people have different needs for college, so it is important to prioritize your needs and choose your colleges accordingly.
Last August, the National Foundation for Celiac Awareness (NFCA) hosted a back-to-school webinar with Gabriela Pacheco, RD, LD, SNS, a school nutrition consultant with expertise in specialty diet accommodations. In honor of National School Lunch Week, we decided to circle back with Gabriela and get some more tips on how parents and schools can work together to provide gluten-free school lunches to celiac and gluten sensitive students.
Gabriela Pacheco (GP): All of those challenges happen and are different in every district.
Staff training is certainly the biggest challenge. With or without a diet prescription, the foodservice staff must understand proper label reading and handling of all foods. This is especially challenging when a reaction to cross-contamination can have serious effects on the student.
Cost can be a challenge in some districts because the school cannot pass on the extra expense to the student. In other words, if a student gets free, reduced, or pays full price for school meals, the school cannot charge them for the extra expense to make the special meal.
The demand “should” not be an issue. One child or 100 students should be treated the same. However, some districts may push back if there is only one student or a few students needing the special meal. The U.S. Department of Agriculture (USDA) states that if a student has a food intolerance or allergy, the school can – but does not have to – modify meals, unless it is a life-threatening reaction such as anaphylaxis. It all lies on the diet prescription from a certified medical authority; if the diet prescription states that meals must be modified, then the district has no choice.
With or without a diet prescription, if the school nutrition staff works with parents of students with celiac disease or non-celiac gluten sensitivity, they demonstrate support of a segment of the community by helping them improve their quality of life and concentrate on school – not stress about food.
NFCA: What are some schools meals that meet the new USDA nutrition guidelines and are gluten-free?
GP: USDA – The National School Breakfast and Lunch Program ensures that your child eats a healthy meal, including meals for children with special dietary needs. Although a gluten-free diet limits some food options, schools can put together kid-friendly school meals. Having a diet different from that of his/her friends may cause your child to feel singled out. Get him/her and yourself involved with cafeteria staff to go over food preferences to make him/her feel more comfortable about school meals.
School meals must meet new meal pattern requirements, which include fruits and vegetables at every meal, as well as a meat/meat alternate (protein source), legumes, fluid milk and whole grains. Gluten-free foods include fruits, vegetables, poultry, fish, beef, nuts, eggs and more. Schools already have these onsite; however, preparation is the key. Purchasing gluten-free bread, for example, can be the only substitution the student requires to have a lunch which looks the same as his friends. Along with a side salad, a fruit and milk, the meal is complete!
Most schools now have salad bars that contain a wide variety of items such as kidney beans, fresh fruits and vegetables, cottage cheese, and some even have the protein available there to make a complete meal. Add milk and again, a complete meal. The student just has to make sure to watch the salad dressings or anything else which may have been cross-contaminated. If the student is old enough, they learn what to choose. If still young, a teacher or cafeteria staff can help with the salad selection.
There are several manufacturers who make gluten-free items specifically for schools. One good resource is Rich Products. They make pizza dough and other items that will fit into the school meals and meet guidelines.
NFCA: How can schools be more welcoming to special dietary needs? Should they post the information on their website? Ask the foodservice director to speak at parents’ night?
GP: Both of those options are a great start. The first step is to consider the needs of the student. Second, it really takes a lot of teamwork. The school nutrition department, the parents and the student should all be involved. Forming partnerships is key. Many districts already post carbohydrate counts/exchanges, PKU diets, etc. – why not add gluten-free options?
Keep in mind that they are not required to post gluten-free options, which is why communication is important. Asking for the menus so parents can go over it with their child and circle meals they like also helps. The cafeteria staff can then work with the student on proper gluten-free exchanges. This way, the meal is not so “special” and different from other students.
NFCA: What advice do you have for parents who are reluctant to contact the school about their child’s gluten-free needs? How can they approach the conversation with confidence?
GP: The first place to go is the foodservice/nutrition director. The cafeteria staff can refer you to him/her. Parents can discuss options with the director.
If the student has a diet prescription from a medical authority, then it is especially important that the director ensures the cafeteria staff, your child’s first line of defense, is trained and understands gluten-free diet and modifications. Even without a written medical statement, the school may provide the child with special meals, but is not required to.
Form a partnership with the cafeteria staff and offer to help choose your child’s meals. Remember that they have to order foods from approved manufacturers, so it may be that they have to order from outside vendors to provide gluten-free options. They cannot charge the student more for that meal, so they do have to consider the increased cost. A parent should never hesitate approaching the nutrition department about their child’s needs, but keep in mind that there are regulations.
NFCA: What’s one thing parents can do during National School Lunch Week to advocate for gluten-free needs in the lunchroom?
GP: Parents can form a partnership with the food and nutrition department to send out a newsletter or a side note on the month’s menu regarding children with celiac disease and non-celiac gluten sensitivity, and how the department can help with modifications. School administrators can also benefit from this, as they don’t always understand regulations.
For more articles on this topic, visit NFCA’s Gluten-Free Resources for National School Lunch Week 2012
After pulling long hours leading up to Appetite for Awareness last month, you’d think our staff at the National Foundation for Celiac Awareness (NFCA) would take some time to wind down. Not the case.
We immediately went full throttle on our next activity, which was hosting a Gluten-Free Culinary Workshop leading up to the Food & Nutrition Conference & Expo (FNCE), an annual meeting for food and nutrition professionals run by the Academy of Nutrition and Dietetics (formerly the American Dietetic Association). Planning had already been underway for months, and all the pieces were in place:
- A Gluten-Free Baking Workshop with Chef Richard Coppedge, CMB, author of Gluten-Free Baking with The Culinary Institute of America (CIA) and a professor at CIA.
- The Ancient Grains Challenge, featuring a “Chopped” style cook-off between teams of dietitians.
- Educational sessions, including “Current Understandings of Gluten-Related Disorders” and “Case Studies: Living with Celiac Disease,” led by NFCA’s Alice Bast and Beckee Moreland, respectively.
I eagerly volunteered to help out and take photos and video at the workshop. (A chance to spend some one-on-one time with dietitians and top chefs? Please, I’m there.) So, bright and early last Saturday morning, I pulled up with a car full of goody bags and made my way up to the Academic Bistro at Drexel University.
Even with all the details our VP Jennifer had provided, I still wasn’t prepared for how active this day would be. After spending the first few hours mixing huge batches of gluten-free flour blends and setting up our impressive ‘pantry’ of ingredients and fresh produce, it was time to step back and put the dietitians to work.
Our participants were from the Food & Culinary Professionals Dietary Practice Group (FCP DGP), a subgroup of the Academy. They already had a basic understanding of gluten-free food and cooking, but they came eager to learn even more. I think had just as much fun watching them as they did participating.
Gluten-Free Baking Workshop
Our baking workshop started off with an introductory lesson from Chef Coppedge. It was clear that he’s an experienced teacher, as his presentation was brief, yet informative. He brought good energy to the room and gave us a few chuckles as he talked. My favorite tip: Use seltzer water to make your dough lighter and fluffier, but don’t leave it overnight or it will over-ferment and deflate upon cooking.
Then it was time to hit the kitchen. The dietitians whipped up gluten-free goodies like jalapeno & cheese muffins, spritz cookies and – my favorite – peanut butter and chocolate cupcakes. The hard part was figuring out which of the four gluten-free flour blends to use for each recipe. While the dietitians were mixing and measuring, Chef Coppedge was there offering quick tips. Best of all, they got to bring home a sample of what they baked. And the smells? Heavenly.
Ancient Grains Challenge
Across the hallway, our participants had to think on their feet as we presented them with pre-cooked gluten-free grains (amaranth, buckwheat and quinoa) and challenged them to make a fresh and healthy meal. For the additional ingredients, we had an impressive display of fresh fruits, vegetables and herbs, plus sauces, broths, beans and more, to complete their dishes.
To determine the winner, we recruited a diverse panel of judges:
- Alice Bast, Founder and President of NFCA.
- Chef Garrett Berdan, RD, a registered dietitian and chef who is part of the White House’s Chefs Move to Schools program.
- Chef Charles Ziccardi, Assistant Teaching Professor of Culinary Arts at the Goodwin College of Professional Studies at Drexel University.
NFCA Board Chair Dorothy Binswanger even stopped by to assist with the judging – a deliciously good decision, as it turned out.
The Ancient Grains Challenge went above and beyond our expectations. The dietitians were incredibly imaginative and resourceful, and their dishes had wonderful flavors. Among the finished plates, there were breakfast/dessert porridge with berries and a touch of orange zest; homemade soup with a side of bean salad; and ‘croutons’ made out of gluten-free grains and flax seed.
To make the challenge even more realistic, some of the ingredients on the table were not guaranteed to be gluten-free, such as a broth that wasn’t labeled gluten-free and some premade sauces that required verification with the manufacturer before using. For the most part, the dietitians were cautious about choosing ingredients that were clearly gluten-free. On a few occasions, they asked about questionable ingredients, which became a teaching lesson as our VP Jennifer walked them through the process to verify the ingredient. When in doubt, they left it out.
While the hands-on activities proved to be learning opportunities, NFCA’s workshop also balanced those active moments with some thoughtful discussions. The morning session on gluten-related disorders prompted good questions from the audience, and the dietitians left with a better understanding of the disease spectrum.
In Beckee’s session, the dietitians discussed a variety of perspectives and scenarios related to gluten-free needs. There was an 8-year-old with celiac disease struggling with her school lunch program; a 19-year-old newly diagnosed and figuring out how to eat gluten-free at college; and a chef who was catering a gluten-free event. The case studies sparked plenty of “A-ha” moments as the dietitians worked through these real-life applications.
So, to make a long story short, it was a winning day for all involved. My favorite part was chatting with the chefs and dietitians during and in-between each session. It always amazes me how a group can have similar interests and skills, yet put them to use in such a variety of ways.
Bravo to the dietitians for putting in an A+ effort at our Gluten-Free Culinary Workshop. We hope to “see” you again during our upcoming webinar on October 31!
For more photos from the workshop, visit NFCA’s Facebook page.
Kristin Voorhees, Healthcare Relations Manager at the National Foundation for Celiac Awareness, caught up with renowned celiac researcher, Joseph A. Murray, MD of the Division of Gastroenterology & Hepatology and Department of Immunology at The Mayo Clinic, to discuss the implications of adopting a gluten-free diet prior to being tested for celiac disease. The below is the response from Dr. Murray on the topic.
What do you suggest to people who have put themselves on a gluten-free diet without prior testing?
My general advice is as follows:
If someone feels they might have a problem with gluten, they should seek testing for celiac disease first. It is important that they not ask for a screening for celiac disease, as this is not a diagnostic test and most often not covered by insurance companies. However, if they have complaints, such as abdominal bloating, diarrhea, etc., then this is not a screening test, it is a diagnostic test for the indication of possible celiac disease. The testing should be done before there is any change in diet. If the patient has already changed their diet for a week or two, they should go back on gluten for at least the same length of time. This should be adequate full gluten ingestion, not simply small amounts of gluten in order to reduce the risk that the test will be false negative. For patients who have gone on a gluten-free diet and have been on it for many months and who had quite severe illness before doing so, they may need to consider a gluten challenge but only under medical supervision. There are a couple tests that might be done in patients without a gluten challenge–for example, a genetic test might be helpful—to identify if they do not carry the genetics required for celiac disease. In this circumstance, you can rule out the possibility of celiac disease. Patients will often ask me, “Why bother checking for celiac disease if I feel better on a gluten-free diet? Why do I need to be concerned?” The issues I see are several:
- If the person really has celiac disease, then they need medical follow-up. The disease consists of severe inflammation in the intestine and it is very important to make sure that it heals and it recovers.
- If the person really has celiac disease, then the family members need to be checked for celiac disease as it can commonly occur in other family members, have significant consequences, and frequently is not diagnosed.
- Going on a gluten-free diet is not specific. There are many reasons that going on a gluten-free diet may make people feel better—for example, eating less junk food—and these effects may be temporary and indeed it may be that their symptoms recur despite continuing to try to be gluten-free leading to more diagnostic mystery.
- Delay of other diagnoses. Going on a gluten-free diet, especially if this is tried for several weeks or months, may delay an alternative diagnosis, which sometimes can be a significant illness for which quite different medical therapy is necessary.
- There may be some nutritional deficiencies that can occur on a gluten-free diet, such as less fiber, which can lead to bowel problems such as constipation, some reduction in nutrients that typically added to gluten-free cereals or breads that are not added to gluten-free alternatives.
- There is a substantial increased cost. A particular situation is where the gluten-free diet is essentially imposed on a child without strong evidence for medical necessity. This will lead to problems, especially when the child grows up and finds themselves in many different situations.
What if the patients who had substantial chronic symptoms, were tested for celiac disease, were found to be negative, and went on a gluten-free diet from which they have derived some substantial benefit?
They may well have non-celiac gluten sensitivity. In order to fulfill the definition of this, it is first necessary that celiac disease was checked for and ruled out, secondly that their symptoms have largely or completely responded to a gluten-free diet, and that response is durable—it is not just a short-term placebo response. For such patients, I certainly don’t object to them being on a gluten-free diet if they derive symptoms benefit from it.
Finally, I am concerned about patients who undertake multiple food avoidances for various reasons, and there is an eating disorder called orthorexia where people avoid multiple foods without clear reason why, and often lead themselves in to severe malnutrition. Hopefully, those occurrences are pretty rare, but nonetheless pretty important.
- Joseph A. Murray, MD
Division of Gastroenterology & Hepatology
Department of Immunology