Posts tagged ‘health’
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
Traveling Gluten-Free: What I’ve Learned in 3 Years
I’ve become quite an expert at traveling. As Director of Gluten-Free Industry Initiatives for the National Foundation for Celiac Awareness (NFCA), I’ve visited over 25 cities and worked in a dozen or more states within three years (my latest NFCA trip was to Atlanta, Georgia two weeks ago for the KeHE Summer Selling Show). I can maneuver through airport security with ease and efficiency, flipping off shoes and jackets and pulling out bags of liquids and my laptop in seconds. And since I have celiac disease, traveling means “always being prepared and aware” so I’ve created a list of “must-haves” snacks, which airports have safe choices and how to find gluten-free friendly and not so friendly restaurants anywhere in the country. (I use the Find Me Gluten-Free app to sort out potential eateries. This is a dining locator not an endorsement of gluten-free options. You still need to investigate by reading the reviews, making a call and asking questions.) I’ve also had to be proactive and advocate for myself and others with gluten-related disorders when it comes to attending business dinners, conferences and events by identifying my dietary needs on conference registration forms, plus notifying event coordinators, hotel hospitality and general managers.
This is all part of trip preparation. It takes a bit more time but I always feel it’s important to be an advocate for not only myself but for all people with gluten-related disorders. And while I’m traveling around the country, I feel it is my job and honor to be the voice for people with celiac disease everywhere by spreading education, awareness and understanding. (You may not want to sit next to me on a plane…you’ll get an earful.) I have learned that if we don’t politely ask, people may not think our dietary needs are necessary. If we don’t carefully express our needs, many may not think there are any. If we don’t calmly mention the mistake, serves and restaurants will never know there is a problem. If we don’t ask if they have completed NFCA’s GREAT Kitchens gluten-free training program, restaurant operators, chefs and servers may not think they need it. But, if we remain patient and plant the seed, the growth will come.
Here is my list of must-have gluten-free snacks to take with me on the go:
- KIND bars
- Gluten-free crackers (If you keep these in a tin, they’re perfect for packing in a suitcase)
- Individual servings of hummus and nut butter
- Fruit
- Jerky sticks
- Cheese sticks
- Mix nuts, dried fruit, gluten-free pretzels or chocolate chips
- Go Picnic boxes (Not everything by Go Picnic is gluten-free, so be sure to check before purchasing)
I’m always looking for new travel-friendly gluten-free foods. Comment below with your go-to travel snack to give me some fresh ideas!
- Beckee
When Life Hands You Lemons…
The following is a guest post by Dhanu Thiyagarajan, a student at University of Pittsburgh and founder of Gluten Free My Campus, the university’s gluten-free student group. Dhanu is also a Campus Ambassador for Udi’s Gluten Free Foods.
Being gluten-free is difficult, but being a gluten-free college student is even harder. I found this out the hard way – from experience. I came to University of Pittsburgh unaware of the city, college-life and, worst of all, where to get safe gluten-free food.
I did come under one assumption that turned out to be very wrong; I believed that there would be a gluten-free club. So many people are gluten-free and especially on a college campus in the city, how could there not be a gathered group of people who know the best gluten-free restaurants and the inside secrets? Once I got there, I realized this club didn’t exist and that scared me a lot. I wasn’t sure why there wouldn’t be a group on campus. Was I the only gluten-free student? Was finding gluten-free food so easy that there was no need for a special group or club?
I gave the situation some time, but finding gluten-free options was terribly difficult. This led me to think there couldn’t be any other gluten-free students, but statistically that made no sense. So, I decided to form the club myself. It didn’t exist, but it needed to. The university needed improvements and I needed help finding gluten-free options. I talked to the nutritionist and the chef at the dining hall (among other people) and found ways that I could connect with other gluten-free people on campus. I was able to engage roughly 10 people and set up a casual meeting.
The day of the meeting came, and I was so excited to meet these other people and talk about the struggles of being gluten-free on campus. To my dismay, nobody came. Not a single person. I figured they didn’t have any problems being gluten-free, and that this didn’t matter to them.
Thankfully, my parents and friends convinced me to try again, so I did. This time, fellow gluten-free students came to the meeting! I am so glad they convinced me to give it a second try, because now Pitt has a fantastic gluten-free club: Gluten Free My Campus!
Have you had a similar experience, or do you know a gluten-free student who did? I’d love to know what their experiences are like on other campuses!
- Dhanu
The Fiscal Cliff and What It Means for Non-Profits
There’s a new catchphrase in town and it’s called the “fiscal cliff.” These are two words that should probably never be linked but here we are, fast approaching this newly defined financial term.
The question is, what does it mean for us as taxpayers? That is difficult to answer at the moment, but here is what we do know: There will be changes to capital gains taxes, estate taxes, and most likely additional limitations to charitable deductions, especially for high income earners. What is a high income earner? Preliminary talk suggests that the definition of a high income earner will be $200,000 of adjusted gross income for an individual and $250,000 for a married couple.

Changes to charitable deductions will have an effect on all of us because of its direct impact on funding for non-profits like NFCA.
I don’t know if you find this a bit unnerving, but I do both personally and professionally. While we’re not all high income earners, the changes to charitable deductions will have an effect on all of us because it will directly impact the funding that non-profits like the National Foundation for Celiac Awareness rely on to serve you.
Consider this: As reported on Philanthropy.com, a recent survey by Bank of America found that 49% of high income earners said they would decrease their giving in 2013 if charitable deductions are limited. That could deal a major blow to non-profits across the U.S.
So what’s the solution? Instead of waiting to see what changes take hold, many donors are opting to increase their charitable giving in the remaining weeks of 2012. We know with certainty what the law says about charitable deductions today.
Donors who make a gift now through December 31st will enjoy the benefit of a full tax deduction and provide NFCA (and other non-profits) the ability to use that gift in the coming year.
We encourage you to share this information with anyone considering charitable giving in the near future. By acting now, you can maximize the impact of donations – for both the donor and the charity!
I am here to help you with any questions or information that you may need. Please contact me, Kimberly Moyer at kmoyer@celiaccentral.org or at 1-215-325-1306 x110.
- Kim
3 Tips for Making Gluten-Free Food Better Than the Original
The following post is from guest blogger Annsley Klehr, owner of Gluten Freedoms, a gluten-free consulting business. Annsley is a teacher, a mom, and a volunteer with NFCA. You can read more on her blog, Gluten-Free Food and Fun.
Some people have the misconception that “gluten-free” means “taste-free.” Here are 3 tips to make your gluten-free dishes delicious:
Choose the Best Tasting Brand
Try as many gluten-free products as possible, and choose the one that reminds you of the good old gluten-days. Remember that quality matters.
Choose the Naturally Gluten-Free Ones
So many foods are naturally gluten-free, and so are plenty of recipes. Focus on those for best bet recipes like Catch-All Roasted Root Vegetables.
Pay Attention to Other Cultures
Choose the gluten-free foods that other cultures eat as part of their everyday diet. That way, you know that you’re not just “substituting,” but rather using foods that have been loved and enjoyed for hundreds of years. Quinoa was considered the mother grain to the Inca and cultivated by the Bolivians over 5,000 years ago. It’s been tested for a lot longer than some of the other shelf products! And the Brazilians make a tapioca cheese bread that is just heavenly. You can find it on the table at the Brazilian steakhouse chain, Fogo de Chao.
Don’t give up on your diet or your belief in gluten-free!
- Annsley
Top 5 Things To Know About Being Gluten-Free Before Applying to Colleges
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.
- Dhanu
Going Gluten-Free Before the Diagnosis: Do or Don’t?
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
Mayo Clinic
.
Appetite for Awareness – Truly Philadelphia’s Premier Gluten-Free Food Fest
Appetite for Awareness 2012 is over, but the office is still buzzing with excitement. When you focus on preparing for an event for months and months, you can’t help but feel a sense of relief and happiness over the success of the event.
I joined the National Foundation for Celiac Awareness (NFCA) team back in May, so this was my first time at Appetite for Awareness. Leading up to the event, I attended planning and update meetings and absorbed all the fine details that go into coordinating an event of this size. Last week, NFCA staff and our wonderful event planners, Phyllis and Ed, went over the final plans, and I thought I knew what the event had in store for all its gluten-free guests. I never could have imagined how big Appetite for Awareness really could be, and how much it could mean to the community.
The venue was the Historic Strawbridge Building in Center City, Philadelphia. For those of you who have never seen it, the building is unbelievably beautiful. It used to be the Strawbridge & Clothier building, but was just converted into a venue for special events. It has that historic look to it, with the grand staircase in the back, low hanging, bright chandeliers, and a working fountain in the walkway that divides the massive floor space. On Sunday, tables snaked through the main hall, loaded with vendor tables all handing out gluten-free samples to the 1,500 attendees.
So here’s how Appetite for Awareness goes: You come through the door, grab your NFCA tote bag and start eating! All of the vendors and restaurants get their own table and they serve only gluten-free food. Even better, all of the restaurants in attendance are trained by NFCA’s GREAT Kitchens program, a training course that teaches chefs all the ins and outs of preparing gluten-free food safely. This is what makes Appetite for Awareness so special. From the pasta samples served by the restaurants, to the brews chilling in the beer garden, it’s all gluten-free. There are no questions to ask your server. There are no concerns about cross-contamination, because nothing containing gluten comes through the door. Everyone there knows what the gluten-free diet is and why it’s so important to those living with celiac disease or non-celiac gluten sensitivity. For once, people on the lifelong gluten-free diet can just relax, eat and have a good time without making special preparations, calling ahead or packing their own snacks.
I spent most of the day walking through the Strawbridge building, snapping photos, live tweeting from the event, and doing Twitter giveaways. (Shout out to Amie Valpone of The Healthy Apple & Crunchmaster, Blue Diamond and PJ’s Beef Steak for providing us with the gluten-free giveaway items. You guys rock!)
I didn’t get to try all of the dishes, but from the massive lines of people eagerly devouring their samples while reaching for another one, I know the food was delicious. A returning favorite were the soft pretzels from Tonya’s Gluten-Free Products, which earned rave reviews at Appetite for Awareness 2010, too. I saw people running to go have a pretzel or two (or three or four). Kids were covered in pizza sauce, and sticky fingers were everywhere. It was an awesome sight.
Personally, I was super excited to meet the people that I talk to on social media all the time. I met Erin Smith of Gluten-Free Fun, Amie Valpone of The Healthy Apple, and the Appetite for Awareness honoree himself, Michael Savett of Gluten Free Philly.

Michael accepting his award from NFCA Founder & President Alice Bast. (PS- isn’t that staircase great?)
NFCA honored Michael Savett at the event for his major contributions to the gluten-free community living in the Philadelphia area. When his son was diagnosed with celiac, Michael started teaching restaurants about the gluten-free diet and kept track of the restaurants that could cater to his son’s special dietary needs. Instead of keeping the information to himself, Michael started Gluten Free Philly for everyone in the area to benefit from. A driving force in creating more availability for gluten-free options, NFCA would once again like to thank and congratulate Michael for his efforts.
Check out the tribute video NFCA made (with the help of Michael’s friends and family) to say thank you.
I had a blast at Appetite for Awareness 2012, and based on the tweets and Facebook comments, it seems like everyone who attended agrees. None of this would have been possible without the generosity of our sponsors, the support of the NFCA board and advisory council members, and of course, our amazing volunteers and staff who put in countless hours to make Appetite for Awareness 2012 a fun and safe event for the gluten-free community.
Visit the NFCA Facebook page to see some of my snapshots from the event and stay tuned for the professional photographer’s pictures to come. While you’re visiting the Facebook page, tell us your favorite part of Appetite for Awareness!
There are so many people to thank and recognize for their contributions to Appetite for Awareness, especially Thomas Jefferson University Hospitals, KYW Newsradio 1060, PREIT, Mercedes-Benz of Fort Washington and West Chester. Click here to see all of our amazing sponsors and participating restaurants and vendors.
Thanks to all who came out to make Appetite for Awareness such a memorable event!
- Alicia

















