Archive for November, 2011
In the spirit of Thanksgiving, I’d like to give a rousing “Thank You!” to our Awareness All-Stars, the volunteers and fundraisers who help us make everyday tasks and gargantuan goals possible. This year, they hosted Cupcake Parties, manned tables, organized events, wrote articles, lent expertise, distributed resources and scaled a mountain, among other contributions. Because of their work, we have more people coming to us for information on celiac disease and the gluten-free diet than ever before.
One of my favorite things about working at NFCA is talking to our passionate volunteers. Their enthusiasm is infectious, and their personal stories always remind me that what we do really does make a difference. I’m sure I’ve learned more from them than they have from me, but all that knowledge helps NFCA better serve the community, so let’s consider it a good trade.
In particular this year, I’ve been blown away by the efforts of our youngest volunteers, who have proven that you’re never too young to be empowered. The kids participating in our Awareness All-Stars Fundraiser have been doing incredible work, and I’m thrilled that we’re more than halfway to our fundraising goal. We also have teens contributing to Kids Central, and still others finding their own ways to support NFCA. These kids are driven and ambitious, and I wouldn’t be surprised if the next Alice Bast were among them.
I encourage everyone to read some of our volunteer stories on NFCA’s Awareness All-Stars blog, and make sure to visit our Awareness All-Stars fundraising page. In the spirit of Thanksgiving, consider making a random donation to one of the stellar kids who have joined our mission. They have been working hard to meet their fundraising goals, and an unexpected boost from the community is a great way to say thanks.
We’ll continue to showcase our volunteers and their efforts throughout the holiday season and 2012. Watch for photos of our volunteers on our Facebook page, and check the Awareness All-Stars blog for more volunteer success stories.
Want to volunteer for NFCA? See how you can help.
[As you know, the National Foundation for Celiac Awareness staff members are big Phillies fans. So when one of our volunteers, Nadina Fraimow, told us she shared the same passion for sports, wellness and all things Phillies, we had to get her on board. Nadina will be sharing her gluten-free experiences as she follows the Phillies year-round.]
A Phightin’ to Be Gluten-Free Blog
Off-season for the Phillies players means strictly business for the team’s management. The spotlight is on Ruben Amaro Jr. and his colleagues, as they invest in talent and, consequently, the team’s future. If the destination for a 2012 Phillies Dream Team is the World Series, then the journey begins now.
November is an exciting time of the year for my dream team, as we celebrate special milestones. Birthdays, anniversaries, an engagement and Thanksgiving festivities call for delicious gluten-free sweets. One memorable dessert is chocolate-covered pumpkin donuts from Sweet Freedom Bakery located in Philadelphia, just minutes from Citizens Bank Park.
Below is a new restaurant dish review on the following baseball-inspired scale:
Triple- Very good
Home Run- Must try
Grand Slam- Sublime
Grilled Lamb Chops with Seasonal Fruit Chutney at Steve and Cookie’s- Grand Slam
Overview: A sublime foodpairing of grilled lamb chops and seasonal fruit chutney completed the perfect meal.
The Scene: It was a special occasion at Steve and Cookie’s in Margate, NJ. As the Phillies management continued negotiations, we enjoyed an off-season dinner at the shore. The desirable, relaxed ambience included candles in the fireplace and live piano music.
Safe Dining: At Steve and Cookie’s, the chefs in the kitchen are educated in gluten-free and allergy friendly dining. The Weekly Specials Menu on Monday and Wednesday evening feature a 3 course gluten-free meal. Also, Steve and Cookie’s website includes gluten-free recipes from an October Celiac Awareness dinner the restaurant hosted.
Presentation: The three juicy, grilled lamb chops were plated in a stackable formation. The shine and char conveyed freshness from the grill. In addition, seasonal fruit chutney and green garnish accompanied the lamb chops. The cranberry, raisin and apple chutney resembled comfort food and offered a holiday-style element to the dish (Note: Seasonal fruit chutney was the chef’s gluten-free alternative to the pomegranate demi-glace on the appetizer menu. Also, I ordered with an additional potato side to replace the risotto and mushroom cake on the menu.)
Taste: The lamb chops were crisp and succulent – cooked to precision! The cranberries, raisins and apples in the chutney added a delicious playfulness and texture to the dish. Ginger, lemon, cider and cinnamon accompanied each tender bite.
Result: The Dream Team combination of grilled lamb chops and seasonal fruit chutney are “out of the ballpark” delicious. (Tip: I ordered two memorable gluten-free appetizers from the dinner menu in place of an entrée. Be creative when dining out and inquire about tasty, gluten-free recommendations from the chefs).
Everyone have a happy, healthy gluten-free Thanksgiving! Stay tuned for new restaurant and product reviews to enjoy during the baseball off-season. Be-Lee-ve it—spring training is just a few months away!
Nadina Fraimow began volunteering with the National Foundation for Celiac Awareness (NFCA) in April 2011, and will be happy to answer messages sent to the email@example.com email account. Nadina learned that she has gluten sensitivity in February 2011, and is grateful for having been diagnosed promptly and correctly by a knowledgeable gastroenterologist. She enjoys running, shopping for gluten-free sweets and creating recipes that are both tasty and healthy. Nadina is a Marketing and Communications professional living and working in Philadelphia. Nadina is also a proud Penn State alumna and an avid fan of the Phillies.
I don’t cook a lot, but when I do, I normally try to make stuff that takes minimal time, effort, ingredients and dishes. My other prerequisite for cooking is that whatever I make, it has to taste great as leftovers. I’m always making enough food to eat for multiple meals throughout the week.
Even with ALL those constraints, there are still plenty of delicious options!
With the holiday season upon us, I’m really into making warm, hearty, comfort foods. Last night I made these really yummy, naturally gluten-free, roasted potatoes with onion and rosemary. They would make a wonderful side dish for your big family turkey day dinner, but can also easily be made as breakfast or brunch option too!
Rosemary is actually one of the wonderful seasonal scents highlighted in our Fall Flavors Cooking and Entertaining Guide from NFCA and Thai Kitchen. This recipe will certainly make your entire kitchen smell just fantastic.
Whitney’s Rosemary Roasted Potatoes with Onion
- Red potatoes
- Onion *any kind will do, but I really love the sweet varieties, particularly vidalia
- Extra Virgin Olive Oil
- Rosemary Leaves, fresh or dried
- Garlic Salt
- Black Pepper
- Preheat oven to 350 degrees
- Wash and chop potatoes and onion, place into large mixing bowl
- Drizzle olive oil over potato and onion mix and gradually add rosemary, garlic salt and pepper to taste. Stir everything until evenly coated.
- Spread potato mixture onto a baking tray, cook until tender. Usually takes about 45mins or so depending on the amount you’re cooking.
- Stir/flip them occasionally to allow potatoes to cook more evenly and prevent them from sticking to the tray.
If I’m making these potatoes for breakfast or brunch, I usually like to cook them a little longer so they’re slightly burnt/crispy. But if you decide to make this as a dinner side dish, you can certainly add different vegetables like celery or carrots into the mix.
So from my tiny apartment kitchen to yours, have a safe and wonderful Thanksgiving. I can’t wait to read about all the fantastic gluten-free feasts everyone is undoubtedly already busy preparing!
[We've been on the hunt for the best gluten-free holiday tips. Naturally, we asked NFCA volunteer Annsley to share her advice. Here's how she stays gluten-free at Thanksgiving, no matter what's on the table.]
Autumn is one of my favorite times of year because it speaks to cool, crisp air, falling leaves, harvests, family gatherings, and lots of food. This all sounds great! Then the reality of the situation hits; my imagination runs wild and I see a playground for gluten: The slide is a big wet lasagna noodle, the swings seats are plump, cushy pumpkin muffins, the dirt is stuffing giving way under the shuffle of feet as animals, adults, and kids slurp and slide all over, smearing gluten from one play structure to the next.
Then the chilly fall air blows across my face and I’m back to reality – gobs of friends and family hovering over the food, fingers picking, serving spoons jumping from one platter to the next. . . This could end up as a regular old disaster, but I then I take hold of my imagination and decide to control the situation with ORDER.
Tips for Thanksgiving when you have TOTAL control:
- If it’s up to you, make all dishes gluten-free. That way, you’ll have no cross-contamination issues!
Tips for Thanksgiving when you have PARTIAL control:
- Make sure there are some gluten-free dishes that are available to you.
- Ask to be the first one served and/or make your own plate before all the guests are served. Take enough for seconds, because once the dishes are touched by others, it could be a slippery slope.
- Set the gluten-free dishes on a separate table or a separate section on the table. They should be the first dishes in the line-up.
- If you’re feeling brave, make a little note next to the gluten-free dishes that says:
This dish is gluten-free and may become contaminated if brought into contact with other dishes. Please use only this serving spoon with it.
Tips for Thanksgiving when you have ZERO control:
- Bring your own food.
- Put your food on one of the plates that everyone else has and bring it out to your place when everyone else sits down to eat.
- Annsley Klehr
Gluten Freedoms, LLC
More from Annsley:
- 5 Rules for Healthy Gluten-Free Living
- My Gluten-Free, Soy-Free World
- Tips for a Gluten-Free Preschool Day
Last month, I took a few days off from the NFCA office and made the short trip to New York City to visit one of my very dear friends from college who was stateside from her time as a Peace Corps volunteer in Ukraine. Aside from having some good old-fashioned girl time with one of my best friends, I had been looking forward to exploring the gluten-free options in NYC, too.
Even though Manhattan is a quick 90-minute drive from Philly, I don’t visit nearly as often as I would like. This time around, I had the good fortune of squeezing in Friedman’s Lunch (located inside of Chelsea Market) twice in my 3-day visit.
I had wanted to check out Friedman’s Lunch ever since I tried Feel Good Foods gluten-free dumplings. The product was launched earlier this year by Vanessa Phillips and Tryg Siverson, who owned Friedman’s Lunch at the time.
My first Friedman’s experience included their brown rice bowl (I love Japanese eggplant and bok choy, which has become a staple in my fridge as of late) and Estrella Damm Daura, the gluten-free beer from Barcelona, Spain. Between seeing my friend Anna for the first time in over a year to sipping on Daura for the first time, I was in heaven!
I know that members of the celiac community have been wary of Daura since it’s made with barley malt, yet falls below 6 ppm. Well, as a very sensitive celiac, I managed just fine. And with Daura winning the “World’s Best Gluten-Free Beer” for the second year running in 2011, I don’t think I need to explain just how much I enjoyed the beer. (As it turns out, I learned that Philadelphia’s 10 Arts Bistro & Lounge just started carrying Daura, so now I know where to go for a local brew).
Two days later, we returned to Friedman’s and despite a line out the door, we were seated within minutes. (Very friendly staff!) I had wavered between a sandwich and the brown rice bowl earlier in the week. I decided that since eating a safe gluten-free sandwich out at a restaurant is such a rare menu option, I would try the cheeseburger. And because French fries are not always prepared in a safe fryer, I decided to go all out and splurge on the calories.
If you didn’t think my Wednesday lunch could be topped, think again: this was the first time I was eating a gluten-free cheeseburger out at a restaurant since being diagnosed more than 4 years ago. Even though I was full about halfway in (check out the pic below – the burger and Katz bun are huge!), I kept going. How could I not?
A very big thanks to the staff at Friedman’s Lunch. Your gluten-free menu options made my week! A special thanks to Vanessa and Tryg, too, for pioneering those options. Good luck as you take the gluten-free world by storm!
[Remember our summer intern, Rachel? Well, she's back at college and recently befriended a fellow student who has celiac disease. Rachel loaded Camille up with NFCA's informational resources, then conducted the following interview about what it's really like to be a newly diagnosed celiac on campus.]
I got to know Camille Griswold, a 20 year-old student at the University of Rhode Island, last year through our sorority, Zeta Tau Alpha. She was recently diagnosed with celiac disease and also found out she cannot consume dairy products. Having interned at the National Foundation for Celiac Awareness (NFCA) this past summer, I lent her some of my knowledge and became a friend who could somewhat understand her new situation.
In the interview below, Camille speaks out about her struggles and triumphs, and the support she received from roommates and family.
Rachel Fox: When were you first diagnosed with celiac disease, and what were some of your symptoms?
Camille Giswold: Over the summer, I was having severe stomach pains to the point where every time I ate I felt nauseous and could barely function. I saw my doctor and he didn’t know [what was wrong] at first, so he put me on medication hoping that whatever was causing the problems would go away. The medication didn’t help, and I ended up going to the emergency room one day after work. They ran blood tests and that’s when I learned that I have celiac disease.
RF: Do you suffer from any other food intolerances?
CG: During all of this, I also developed a dairy intolerance. I cannot eat anything with milk products or that are made in a factory that handles milk products. When I do eat things with milk, I get an awful stomach pain.
RF: Were you worried about coming to school being recently diagnosed? If so, why?
CG: I was terrified to come back to school. Over the summer, it was hard enough explaining to my family and close friends that yes, I used to be able to eat those things, but now I can’t. People at home were not as understanding as I thought they would be because they were confused as to why this has happened now that I’m 20.
I had no idea what to eat at first and was confused and scared. I was afraid I would feel left out when my friends went out to eat or not know how to feed myself in my own house without my mom’s help. Since this was so new I didn’t like talking about it and was depressed for a few weeks. I knew it would be hard to come back to school because everything in my world was completely different.
RF: Were your roommates accepting and understanding of your new dietary needs?
CG: At first I felt like they felt bad for me. I don’t like when people have pity on me because then I feel bad for myself and I don’t want that. There were a lot of nights when my roommates would be thinking of things to make for dinner, come up with something they all agree on and then look over at me and remember that I couldn’t eat it. I don’t like when people try to plan meals around me because it’s just too complicated and when I cook for myself it’s only me who has to eat the substitutes. There were a lot of times that they would forget about my special diet all together and I would have to remind them.
RF: What are some things they do to help?
CG: They tried making me pizza and we would cook gluten-free brownies and cookies, but to me they never taste as good as what I know and love. It would bother me when they would try to make me feel better and say things like, “Oh, they don’t taste that bad,” because to someone who can eat the real thing it’s easy to say it doesn’t taste that bad. They’re not stuck with these options for the rest of their lives. They can always go and eat the good things later.
They try to substitute ingredients so I could eat them, too. They also have become more understanding and they rarely forget about my diet now.
RF: What are some things you have trouble with in your living arrangements with people that aren’t celiac?
CG: My biggest problem is that I have to buy special foods like sauces and breads that do not contain wheat and dairy, and people tend to forget and will eat my foods. It bothers me when people eat my foods because it’s not like I can share their food back and my food normally costs more than regular food.
Also, it’s hard when cooking because I’m always afraid of cross-contamination between the pots and pans and my foods, so I tend to clean them very well before I use them. The biggest problem is that they don’t have a full understanding and there are times they try to help me by giving me food suggestions, but I’m normally frustrated and just don’t want to talk about it.
RF: What’s your favorite food to make?
CG: I like making gluten-free soy sauce chicken with white rice and broccoli
RF: Who do you find helps you the most when you become frustrated with celiac?
CG: My mom is my crutch through all of this. She was there with me through all the nights when I couldn’t move because my stomach hurt so badly, to the nights when I would be so upset because all I wanted was macaroni and cheese and I couldn’t have it. She is there when my roommates make me frustrated with their suggestions and she listens to me complain about how I never have anything I want to eat. She doesn’t give me advice as much as she just listens so I can know she’s there. I know that she doesn’t always understand what I’m going through, but she tries her best.
RF: What is one thing you’ve learned while having celiac that has made you stronger?
CG: I believe in myself more now. I never thought I would be able to make it through this. Now that I can sit in a room with people eating foods that I used to love and not feel bad for myself is my biggest accomplishment.
Did you struggle with the transition to a gluten-free lifestyle? How did you stay gluten-free at college? Share your words of encouragement in the comments below!
NFCA Healthcare Relations Manager Kristin Voorhees is featured in the Fall 2011 cover story in Expression, Emerson College’s alumni magazine. The article, titled “The Great Explainers” puts celiac disease – and Kristin’s work to clear up misconceptions – at the forefront.
The story addresses a key problem in celiac awareness: while attention to celiac and the gluten-free diet has increased, so has the threat of misinformation.
“A deluge of information does not guarantee… that the messages the public receives about gluten-free foods are accurate or that individuals know how to make the best food choices,” the article notes.
That’s where Kristin comes in, to “separate the wheat from the chaff,” as the writer puts it.
The staff is thrilled to see Kristin recognized for her important work at NFCA, and for bringing celiac awareness to her fellow alumni! We encourage everyone in the celiac and gluten-free community to share this article and encourage their friends to get the facts straight about gluten-free.
Read the article: The Great Explainers (cover story on page 19; sidebar on page 23).
A few weeks ago, Kristin (NFCA’s Healthcare Relations Manager) received an email about the United European Gastroenterology Week (UEGW) Interest Group Meeting on Celiac Disease, held in Stockholm, Sweden on Oct. 23, 2011. While Kristin wasn’t able to hop a flight to attend, she asked celiac expert Jonas F. Ludvigsson, MD, PhD, of the Department of Pediatrics, Örebro University Hospital, Örebro, Sweden, to share his thoughts from the meeting. Here’s what Dr. Ludvigsson had to say:
This year’s celiac disease group meeting had the title “Quantifying the frequency and consequences of coeliac disease: perspectives from coeliac disease and related areas.” The meeting was chaired by Chris Mulder and Jonas F. Ludvigsson.
Tim Card, Nottingham, was the first speaker and had been given the task to review the prevalences of GI diseases in Europe. He did, however, start out with a slide showing Robin Hood! Tim Card noted that the celiac disease prevalence is difficult to estimate since it is dependent on the definition of celiac disease. The celiac disease definition has changed over time, and in general the prevalence is highest in studies where only antibody positivity is required for diagnosis, while histology gives you intermediate prevalences; and clinically diagnosed celiac disease gives you the lowest prevalence.(1)
Card commented on the Mustahlati study(2) and during the celiac disease interest group meeting there was some discussion regarding geographical differences in celiac disease. Mulder pointed out that many cases of tropical sprue in India are actually celiac disease.
In contrast to celiac disease, the definition of inflammatory bowel disease (IBD) has been fairly constant over time, which makes the prevalence much easier to follow over time. Of note, Tim Card showed that data on prevalence and incidence could be used to calculate the duration of IBD in a patient (patients may die). He also estimated that about 1/3 of all ulcerative colitis patients are unknown to British health care.
I talked about shared risk factors in celiac disease with regards to selected complications, but I let myself stray into related areas as well, and talked about mechanisms behind complications in celiac disease. Most emphasis was placed on malabsorption of nutrients (vitamin D deficiency may explain the increased risk of asthma(3) and tuberculosis(4) in celiac disease; folic acid deficiency the increased risk of unipolar depression(5); while sometimes celiac disease complications per se lead to malabsorption (e.g. pancreatic insufficiency in celiac disease (6; 7))).
We also discussed the role of inflammation in celiac disease (8;9) and how this might influence the risk of complications(10-12). Finally, I mentioned shared genetic risk factors(13;14), which may explain the 2-3-fold increased risk of future type 1 diabetes seen in celiac disease.
After this talk, we discussed breastfeeding in celiac disease and that recent data have been contradicting regarding the role of breastfeeding. For instance, the German group Decker et al found an increased risk of future celiac disease in
children with long breastfeeding duration(15); while Welander et al found no association between breastfeeding and future celiac disease (16).
Steffen Husby talked about the link between celiac disease and type 1 diabetes (T1D). He mentioned the underlying shared genetics (DQ2/DQ8) and pointed out that there have been several publications suggesting that certain mutations (SNPs) are shared in T1DM and celiac disease (17).
In a Danish study from 2006, Hansen et al found an overall prevalence of T1D of 12.3% (18). Also Hungarian researchers have found very high prevalences of celiac in T1D patients (8.3%) (19). Patients with T1D and celiac disease have lower weight and height than non-celiac T1D patients. They more often suffered from arthralgia, loose stools, iron deficiency anaemia and abdominal pain. Untreated celiac disease resulted in lower BMI, but also lower HbA1C(!). Treatment with a gluten-free diet then led to a recovery of BMI, but also increased insulin requirements (20).
The recent paper by the Sheffield group (21), showed higher rates of advanced retinopathy 58% vs. 25%, and nephropathy 42% vs. 4% in patients with T1D and celiac disease vs. those who only had T1D. Patients with both diseases also had lower cholesterol. It seems that patients with both diseases have an increased intimal media thickness with implications for atherosclerosis (22). Husby also reviewed the evidence of other autoimmune diseases in patients with celiac disease and a gluten-free diet (23).
Cosnes et al have found that patients with a gluten-free diet were at a lower risk of other autoimmune diseases than those on a gluten-containing diet; and the potential role of gluten-free diet in T1D (24).
Joe West, Nottingham, had been asked to talk about cardiovascular disease in celiac disease. He began his lecture by listing modifiable risk factors for cardiovascular disease (smoking, cholesterol, diabetes, high blood pressure, BMI, homocysteine, etc). He then underlined that the risk of cardiovascular disease does not seem to be increased in undiagnosed celiac disease (25), but rather decreased (26).
During the meeting, we had a discussion about the slight discrepancy in cardiovascular results in Swedish data (small increased risk (11)) and British data (potentially a small decrease (27)). As Joe West pointed out, the results are not really contradicting since confidence intervals overlap. Among reasons for a potential discrepancy are 1) different socioeconomic characteristics of celiac disease patients in Sweden and Britain, 2) different smoking patterns; and perhaps 3) different BMI/risk of underweight in celiac disease patients.
Dr Fabiana Zingone, Naples, reviewed the literature around infectious diseases in celiac disease. Swedish cause-of-death data have shown an increased risk of dying from infections (28). The increased risk of infection has since been confirmed for tuberculosis (4; 29; 30), pneumococcal infections (31; 32), and influenza (33).
The increased risk of pneumococcal infections may be due to hyposplenism (34; 35). Hyposplenism is associated with fewer IgM memory B-cells that are important in the defence against encapsulated bacteria. Zingone also commented on pneumococcal vaccination in celiac disease. A British study recently suggested that the frequency of deaths from pneumonia in celiac disease is an argument to vaccinate against pneumococci (36).
Celiac disease patients may also be at increased risk of Helicobacter pylori infections (37). Park et al, as well as Zingone herself, have shown that celiac patients have a defective response to the Hepatitis vaccine (38; 39).
Finally, Luisa Mearin, the Netherlands, talked about quality of life (QoL) in celiac disease. Unfortunately, I had some problems with my computer during this last lecture, so I took fewer notes. Mearin stated that parents usually think that the quality of life is lower in their celiac children than the children themselves think! It seems that the QoL is not influenced by compliance, but by the perceived degree of difficulty.
We also discussed if/how the celiac disease diagnosis in someone with few symptoms can have a negative effect on quality of life. At the same time, a study by van Koppen et al found a good quality of life in children whose celiac disease was detected through mass screening (40).
- Jonas F. Ludvigsson, MD, PhD