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Conference Recap: Development of Therapies for Celiac Disease at Columbia University
You might think the best part of spring is the melting of the snow and the arrival of warm weather, but for the National Foundation for Celiac Awareness (NFCA) team, spring means one thing: travel! Last month, I gave a quick overview of where the NFCA team would be heading over the next few months. This month, I am excited to report on the Development of Therapies for Celiac Disease Conference, hosted by the Celiac Disease Center at Columbia University in New York City. The conference offered two tracks: one for people living with celiac disease and another for medical professionals. This year, NFCA Director of Healthcare Initiatives Kristin Voorhees and I were able to attend the scientific track geared towards these medical professionals.
We heard expert speakers from around the world share a variety of information; some new, some not so new. Here are just a few of, what I feel, were some of the most interesting pieces of information.
Is gluten content in wheat the cause of the rise of celiac disease?
It’s one of the many theories out there on the increased prevalence of celiac disease. Donald Kasarda, PhD recently published a research paper on this topic and he presented the information at Columbia. The gluten content in wheat has notincreased over the past 50 years. However, Dr. Kasarda did find an increase in the use of vital gluten, a naturally occurring concentrated protein from wheat that is often added to wheat-based products to improve their elasticity and texture. While its influence on the rising celiac disease numbers is still up for debate, the topic made for an interesting discussion.
Who is more likely to develop celiac disease?
We know that family members of people with celiac disease have a higher risk of developing celiac disease, but what about the general population? Celiac disease has always seemed more prevalent in women than men, but some theories have suggested that women are simply more inclined to pursue a diagnosis than men. Researchers in Europe, however, are screening children under the age of three who have a family history of celiac disease and have been seeing higher cases of the disease in girls than in boys. More research is certainly needed, but this study has provided some insight into those who could have a higher risk of developing the autoimmune disease.
Does a strict gluten-free diet reverse villous atrophy in people with celiac disease?
People with celiac disease are lucky to know what triggers their autoimmune disease, but do we ever truly heal after removing gluten from our diets? Past research has shown that this is unfortunately not the case, and new research presented at Columbia continued to prove that there is evidence of inflammation and a lack of total intestinal healing in a majority of people with celiac disease. This information points to both the need for biopsy to remain an essential part of diagnosis and treatment beyond the gluten-free diet. While NFCA has reported on three therapies in progress, we learned about a new potential treatment being investigated by a company in Israel called BioLineRx. They are studying a potential drug that in theory, would bind to gluten in the digestive tract and allow it to be passed out of the body through a bowel movement. Not the most dinner-conversation-friendly topic, but fascinating nonetheless.
The topic of potential celiac disease therapies also sparked a conversation on the importance of participation of the community in clinical trials. While they are not right for everyone, clinical trials are the only way to advance potential medications that can help us best manage our chronic disease.
What factors can trigger celiac disease?
We know that the genes HLA-DQ2 and/or DQ8 are required, but not sufficient, to develop celiac disease. An environmental trigger must occur in order for the disease to develop. While it’s hard to pinpoint each individual’s disease trigger, Dr. Jonas Ludvigsson discussed how pregnancy may be a risk factor for developing celiac disease later on in life. Having struggled with miscarriages and a full-term stillbirth prior to being diagnosed, this research finding is of special interest to me.
I must congratulate Dr. Peter Green and all of the staff at the Celiac Disease Center at Columbia University for hosting such an intriguing, comprehensive and all-around informative conference. Those who spoke at the event shared fantastic information and I am already looking forward to the next meeting!
To our GREAT Health,
Passover and Easter Desserts
Passover and Easter are only a few short weeks away! Here are two dessert recipes that are perfect for the occasions. For more recipe ideas for these religious holidays, check out the recipe collection below!
PASSOVER ALMOND CAKE
This version is one of my son’s favorite recipes and was actually one of the first ones I converted to meet his gluten-free needs.
About Chef Oonagh Williams
British-born award-winning chef Oonagh Williams has a culinary arts degree and was trained in London and Switzerland. Based in New Hampshire, Chef Oonagh began adapting meals to gluten-free versions after her son was diagnosed with gluten and lactose intolerance two years ago. To learn more, visit Chef Oonagh’s website at www.RoyalTemptations.com or ‘Like’ her at Gluten Free Cooking with Oonagh on Facebook.
For the Newly Diagnosed: Spring Cleaning, Gluten-Free Style
Get your gluten-free cooking and baking questions answered by the expert! Have a question for Silvana? E-mail Alicia at [email protected] and your question could be answered in a future NFCA newsletter.
Spring has sprung and you know what that means! It’s officially spring cleaning season. When we think of spring cleaning, we normally think of clearing out our closets and washing windows, but what about our pantries? It’s the perfect time to dig in and make your pantry gluten-free friendly. For some families, it’s not realistic to have an entirely gluten-free household. If you fall into this “shared kitchen” group, look at spring cleaning as a way to make sure you’re eliminating the risk for cross-contact in your pantry.
Here are some ideas to consider when reorganizing your shared pantry:
Once you’ve reorganized your pantry to keep your gluten-free and gluten-containing food separate, it’s time to stock up on some pantry staples. Consider keeping the following common ingredients on hand:
For more tips on stocking your pantry, check out my Top 15 Gluten-Free and Dairy-Free Pantry Essentials from SilvanasKitchen.com.
About Silvana Nardone
The low-FODMAP diet is rapidly gaining attention. You may have heard NFCA talk about it on Facebook or during our recent webinar, “Is Gluten Really the Problem? The Role of FODMAPs in Gluten-Related Disorders.” But what exactly are FODMAPs?
Here’s the short answer: FODMAPs is an acronym for a group of carbohydrates found in a variety of foods from apples to milk and from honey to kidney beans. These carbohydrates are poorly absorbed in the intestine and, in some people, can cause stomach upset and other gastrointestinal symptoms.
Want to learn more about the low-FODMAP diet? Visit the Huffington Post to read an op-ed by NFCA President and CEO Alice Bast.
By Alicia Carango, NFCA Communications Assistant
NFCA President and CEO Alice Bast loves social media and the way it brings our team closer to the celiac disease and gluten sensitive communities. As the Communications Assistant with NFCA, you can bet I feel the same way. Alice is often out-and-about at various conferences and she frequently comes back inspired and full of ideas from the people she meets. A few weeks ago, however, inspiration came from Alice’s daughter.
After struggling with skin issues, Alice’s daughter decided to try some natural remedies. In just a few weeks of using a yogurt mask to clean her face, she saw amazing improvements. Alice was so excited by the idea of talking about naturally gluten-free cosmetics, that she suggested I do some research and share my findings with the community. I recruited our Director of Development Kim Moyer – our resident “fashionista” and make-up pro – for some help.
Kim did some research on the topic and decided that if we’re going to write about something, we’d have to try it out for ourselves. I agreed and Kim came to our next staff meeting equipped with natural face cleansers: olive oil for make-up remover, raw honey for cleansing masks, coconut oil for moisturizer… the list goes on. After our meeting, the ladies of NFCA started trying out the products. I’ll admit, I wasn’t too excited to try cleansing my face with the same ingredients I use to make dinner, but I gave it a go for the sake of a blog post.
We all had a blast and had a good laugh when myself and Nancy Ginter, our Director of Administration, missed the “don’t use too much” memo on the coconut oil and were left shiny and dripping on the table. The real “ah-ha!” moment, though, came when we realized that the answer to our skin care troubles were the same answer to the troubles people with celiac disease and gluten sensitivity experience: naturally gluten-free food.
We couldn’t help but think that what our experiment really proved was not that coconut oil is an amazing moisturizer (it totally is, by the way), but that food truly is our medicine. Healthy, natural food is the way to heal our bodies, inside and out.
A word on gluten in cosmetics: Gluten-free cosmetics should be used when there is a risk of ingesting gluten (think lipstick, hand lotion, etc.). Gluten is not believed to be absorbed by the skin unless a deep wound is present. You can read more on the topic in the U.S. News & World Report article “Are Gluten-Free Cosmetics Necessary?” featuring commentary from NFCA President and CEO Alice Bast.
NFCA loves sharing recipes from gluten-free bloggers across the web. After all, gluten-free food is medicine for people with celiac disease or gluten sensitivity.
This month, we’re letting you pick the recipes you want most. We’re pitting blogger against blogger in a friendly competition – the Gluten-Free Blogger Food Photo Face-Off. All you have to do is vote on which recipe you most want to receive based on a photo alone. At the end of the month, NFCA will share an eCookbook featuring the recipes gaining the most votes.
Special thanks to Crunchmaster, our campaign sponsor, and the following bloggers participating in the face-off!
How to Read a Label if you have Celiac Disease
When you have celiac disease, the only way to avoid symptoms is to avoid eating any gluten. But howdo you know which box of crackers is safe and which isn’t? Gluten can be hidden in almost anything you might find at the grocery store, so careful label reading is necessary to stay healthy.
In the United States, there are some regulations that make label-reading easier, but it can still be daunting walking down those aisles at the grocery store. Here are some tips for how to know what can go in the cart, and what should stay on the shelf.
We’re working on a special surprise for our community, which we will unveil on May 1 – the first day of Celiac Awareness Month. We want all of you to be a part of our project! To join the project, simply send a photo of yourself or your gluten-free loved one to [email protected] by Monday, April 14, 2014. We can’t wait to see your photos! And, you will love what you see on May 1!
Two major religious holidays are right around the corner: Passover and Easter. To help make your celebrations easier, we’ve compiled this list of products and recipes appropriate for Passover and Easter. Check them out below and feel free to share your favorite holiday recipe with us on Facebook!
Get more timely recipes in NFCA’s Gluten-Free Seasonal Recipe Box!
*While this recipe is gluten-free, not all recipes on this website are gluten-free. As with all recipes, be sure to check all ingredients to ensure they are gluten-free before making.
Safe Gluten-Free Options: 3 Tips for Working with Schools and Colleges
More schools and colleges than ever before are offering gluten-free options. Some have mastered safe gluten-free cooking, but others still need some education. It can be frustrating for students and parents looking for gluten-free options in an academic setting, but it certainly can be done. Most schools and colleges are eager to help their students; they just need the education to do it.
Here are three tips for having a productive conversation with a school or college about offering gluten-free options.
Understand the School’s Structure and Who Manages the Foodservice Department
Every school is different, so it’s important do some research to find the right person to discuss gluten-free options. In a grade school or high school setting, you may need to speak directly with the nurse or kitchen manager.. At the college level, the foodservice manager runs the dining hall but other contacts to keep in mind are the campus’s registered dietitian, disability office, or healthcare services department.
Articulate Your Gluten-Free Needs Clearly
Once you know the appropriate contact at the school or university, it’s important that you’re able to explain your needs in a way that is easily understood by someone who may not have had previous experience with celiac disease or gluten sensitivity. Be sure to note the seriousness of the conditions and stress how vital the gluten-free diet to your or your child’s health. It can be incredibly helpful (and sometimes necessary) to have physician documentation outlining your diagnosis and prescription of a gluten-free diet. When talking to your contact at the school or college, don’t be afraid to ask lots of questions. Accommodations will be made much more easily if all parties involved are on the same page. Remember, you are your own advocate!
Connect with Others
With the prevalence of celiac disease and gluten sensitivity on the rise, chances are there are others at the school or college who also require a gluten-free diet. Connecting with others in a similar situation will help you better navigate the system and learn how to make sure gluten-free needs are met. A teacher or nurse at a grade school or high school may be able to connect you to other parents while Facebook groups and on-campus clubs can be helpful in meeting other gluten-free college students. Not only can making connections help you navigate the gluten-free diet in a school setting, but it can also help make the case for the need for gluten-free options. The more people in need, the more likely a school or college will be to offer safe options.
NFCA also encourages you to speak with your school or college about online training for gluten-free food preparation. You know that it takes more than just gluten-free ingredients to keep the celiac disease and gluten sensitive communities safe. Help NFCA help you by encouraging your school or college to take the GREAT Schools, Colleges and Camps program, designed to educate foodservice professionals in these settings on the ins and outs of gluten-free food preparation. Stay tuned for more details on an updated version of the program – coming soon!
Free Webinar: Celiac Disease in Families: How Genes Determine Your Risk