07/01/2018

July 22, 2018

07/01/2018


COLUMNS

Note from Alice

Cooking with Oonagh

HEALTH/WELLNESS

Study seeks to meaure how much gluten celiac disease patients consume even when they are on a gluten-free diet
Study results presented at DDW offer hope for future protection from accidental gluten exposure
Both celiac disease and related celiac disease autoimmunity are rising and rates vary by geographic location
Dairy-Free, Gluten-Free Blueberry Cheesecake

LIFESTYLE

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NEWS & UPDATES

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Note from Alice: The Good, The Bad and the Hopeful

There’s good news, there’s bad news, and then there’s hopeful news.

Let’s get the bad news out of the way. As I discussed in my January Huffington Post column, celiac disease research is woefully underfunded. According to a review of National Institutes of Health (NIH) data, celiac disease consistently receives the lowest amount of federal research funding compared to other digestive diseases. Additionally, the National Institute for Digestive and Kidney Diseases awarded the fewest number of grants to celiac disease research from 2011 to 2015. Two possible reasons for the disparity in NIH funding include varying numbers of established research programs to recruit young investigators and fewer grants submitted because of a lack of scientific investigators in the field due to poor funding. Simply put, there aren’t enough scientists studying celiac disease, and because of this, there isn’t enough money to bring more in. It’s a bit of a catch 22.

Luckily, there’s been some recent good news. From a wave of positive attention in May for Celiac Awareness Month – which included the launch of the Beyond Celiac “Celiac Disease is a Monster” video and a successful Party City register donation drive – to a strong focus on celiac disease and gluten-related disorder research being presented in June at Digestive Disease Week(DDW), there’s been momentum and a focus on celiac disease like we’ve never seen before. That’s truly news and we’ve been working hard to see for the past 15 years.

While attending DDW, I noted there were at least 70 lectures and posters covering celiac disease alone. Presentations ranged from the rise of celiac disease incidences, to a new celiac disease drug that could mean fewer symptoms and less damage, to measurement of gluten exposure through urine and stool tests. The Beyond Celiac team and I were heartened by the increasing number of studies underway. While there, we advocated with researchers for patients and the need for treatments and a cure. We were able to speak directly with scientists about their current research projects, including the GEMMand Doggie Bag studies.

That brings me to the hopeful. Beyond Celiac is committing to breaking the celiac disease scientist/funding shortage cycle. To do so, we are expanding the number of researchers in the field by recruiting young investigators – scientists at the beginning of their careers – whose work will be mentored by established celiac disease researchers. This year alone we hope to fund two new young investigators.

Accelerating treatments and a cure for celiac disease depends upon engaging outstanding clinical and basic scientists in careers devoted to celiac disease research. But we need your help to bring two new scientists into the field this year.

It takes $150,000 to fund two new investigator awards. Please join the effort by donating or starting an individual giving page. If 300 people each raise $500, we can make two new young investigator awards a reality by the end of the year.

We know our goals are lofty, but so is our vision: a world in which people with celiac disease can live healthy lives, free from social stigma and fear of gluten exposure. Can it be done? Yes! Together, we can create a world Beyond Celiac.

To living life Beyond Celiac,

Alice Bast
Beyond Celiac CEO


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Gluten-Free Cooking with Oonagh

My Father’s Real Mayonnaise

A simple gluten-free recipe for homemade mayonnaise that can be jazzed up with spices for a variety of dips and dishes! GET THE RECIPE

 

 

Gluten-Free Nut Cake

A no-bake gluten-free version of a traditional Lithuanian nut cake. GET THE RECIPE

 

 

 

About Chef Oonagh Williams


Chef Oonagh Williams

British born Chef Oonagh Williams holds a culinary arts degree and spends her time cooking, writing, speaking, and educating the public on gluten-free and allergy-free diets. She herself has celiac disease along with other food allergies. When not writing or speaking nationally on food, she teaches cooking classes, hosts dinner parties, and offers one-on-one help. Locally, she teaches healthier food cooking classes including vegetarian cooking for everyone, as most real food is naturally gluten-free and free of many other allergens. Chef Oonagh had the honor of being a speaker at the Boston Celiac Symposium, alongside top doctors from Beth Israel, Mass General, and Harvard Medical School.

 


Buy herDelicious Gluten-Free Cooking e-book, over 200 pages, full color photos, only $20;

like her Facebook page, Gluten-Free Cooking with Oonagh, where she posts recipes, links to her appearances, and gluten-free products she’s discovered; and connect with her on Skype for help in following a food allergy diet.

 

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Celiac Disease Researchers Examine the Content of Patients’ Doggie Bags



There are two ways you could interpret the name of the new Doggie Bag study, which investigates how much gluten people with celiac disease are getting in their diets. And each would be correct. Participants in the study provided portions of all the food they ate over 10 days – what you could think of as the doggie bag you bring home from a restaurant. They also provided stool samples, which might bring to mind the bags dog owners use to clean up after their pets.


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New Drug Could Mean Fewer Symptoms and Less Gut Damage for Celiac Disease Patients

Celiac disease patients who suffer symptoms and gut inflammation despite being on a gluten-free diet could get relief from both at the same time from a new drug being developed by Amgen, a study presented at Digestive Disease Week (DDW) showed. Markku Maki, M.D., the principal investigator, detailed results of the study of AMG 714, a drug that neutralizes a molecule, called IL-15, that is believed to be a key driver in celiac disease.


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More Evidence Celiac Disease is Underdiagnosed

Both celiac disease and celiac disease autoimmunity are likely underdiagnosed in the general population, according to an international study presented at Digestive Disease Week (DDW). Researchers working on The Environmental Determinants of Diabetes in the Young (TEDDY) study set out to provide more current estimates of the incidence of celiac disease in children at genetic risk selected from the general population.


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Allergic Living:Dairy-Free, Gluten-Free Blueberry Cheesecake with Graham Crust

By Laurie Sadowski

This classic cheesecake uses a homemade gluten-free graham cracker crust, then is filled with a tangy, creamy dairy-free filling and a fresh blueberry topping. It requires some chilling time, but then you’re ready to kick back and indulge.


GET THE RECIPE on
Allergic Living.

Photo credit: Laurie Sadowski/Allergic Living

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The Beyond Celiac Team Discusses Our New Gluten-Free Store!

Watch the recording of our latest Facebook Live video here.

 

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