Last month several members of the National Foundation for Celiac Awareness (NFCA) team participated in the 15th International Celiac Disease Symposium (ICDS), the most comprehensive celiac disease meeting in the world. Held September 22-25, 2013, in Chicago, ICDS was a whirlwind conference with a chance to meet with NFCA’s distinguished Scientific/Medical Advisory Council and catch up with fellow colleagues from all walks of the celiac disease field. We also enjoyed the opportunity to meet new people and, finally, put faces to names of individuals we regularly work with remotely.
In her October 2013 newsletter note, NFCA President Alice Bast shared some highlights from NFCA’s experience at ICDS 2013. But this was just a sneak peek! Some of our NFCA staff have compiled an informal list of discussion topics and statistics that resonated the most. To give you an idea of individual interests, we’ve categorized the meeting highlights by staff member.
Head to NFCA’s Research News Feed on CeliacCentral.org to get all the highlights!
Last month I had the honor of participating in the Drug Information Association’s (DIA) 49th Annual Meeting as a 2013 DIA Patient Advocate Fellow.
Because the gluten-free diet is currently the only treatment for celiac disease, some of you may be curious as to why I was interested in attending a meeting focused on the pharmaceutical industry and regulatory sciences.
Today we know that the gluten-free diet isn’t perfect – cross-contamination, isolation, constant fear of being gluten-ed, worry about finding a safe meal when dining out or traveling, the list could go on.
But these truths have not always been recognized or established.
Celiac disease was once considered a rare childhood condition that could be wholly treated by eliminating dietary gluten and these misconceptions significantly hindered research into pharmaceutical therapies for decades.
As one of the most commonly occurring lifelong genetically-determined diseases with an increased risk of health complications such as bone disease, infertility and intestinal and bowel cancers if left untreated, it is critical that celiac disease be recognized as a chronic condition worthy of the pharmaceutical industry’s attention.
Although a pharmaceutical treatment is absent from today’s market, it is exciting to have three treatments currently undergoing clinical trials in the US, each offering the patient population a unique solution for their celiac disease.
As these trials, and hopefully one day others, progress, it is essential that celiac disease patient advocacy organizations know how to navigate the pharmaceutical industry and the regulatory science field. An alternative treatment for celiac disease is no longer a hope but a reality and patients must learn about their important role in scientific research, how drugs are discovered and developed, and how clinical trials are conducted. In this case, knowledge is truly power.
A sincere thanks to Donna Mayer, the DIA Board of Directors, the 2013 Fellows, DIA Fellow Alumni, and the many professionals involved in the selection process and planning of this year’s meeting. It was a transformative experience and an incredible learning opportunity and I look forward to applying my new found knowledge to my work as a health communications professional.
Want more info?
Stay on top of the latest news in the world of celiac disease drug development and clinical trials by visiting NFCA’s new web section on these very topics.
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: email@example.com.
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
Summer is my favorite time of year, so I am always a little sad when Labor Day weekend arrives. Warm (read: hot and muggy) weather has never bothered me too much. I have taken it as a nice break from the dreary Winter months and what, as of late, seem to be very short Fall and Spring seasons. I like to spend my weeknights going for a run through downtown Philly or sipping on a margarita (good thing they are naturally gluten-free!) with friends and my weekends down the shore enjoying the sun and ocean.
But here we are at the inevitable end of summer. As I get ready for a fun weekend with friends at a music festival, here are some of my gluten-free tips for your holiday weekend no matter where you are headed.
- If your plans involve an event or location where outside food is either not permitted or gluten-free food is not available, I always opt for a big breakfast ahead of time like hot quinoa with shaved coconut, sliced peaches and almond milk. Not a fan of warmer meals during the summer months? A smoothie with a banana, blueberries, kale, beets and some gluten-free protein powder has become a staple for me recently. Throw in some raw almonds or a gluten-free energy bar (KIND is my staple) on the side and you’re all set.
- For those who will be relaxing on a lounge chair either poolside or in the sand, you can snack on green or red grapes. Try sticking them in the freezer too, it’s a nice plus. By the time you’ve arrived at your destination and are ready to eat them, they should still be chilled! You can also do the same with cherries. If you have access to a nearby freezer you can even snack on these naturally gluten-free bites: slice up a banana, spread some nut butter on top, then drizzle enough hot fudge or dark chocolate to cover the slice. Stick in the freezer for a few hours and you’re good to go! Just remember: keep them in the freezer until you’re ready to eat, otherwise you will have a chocolate mess on your hands (literally).
- Headed to a BBQ? A variety of gluten-free beers have been popping up all over and I think we can all appreciate having a choice. If you have access to a food and beverage store that sells craft beer why not make a mixed pack to taste-test with your family and friends? For those of you in the Philadelphia region, The Foodery is always an excellent choice.
What are your favorite gluten-free tips for the long holiday weekend?
Researchers from the Celiac Center at Beth Israel Deaconess Medical Center in Boston have published a new paper on the gluten challenge. Late last week NFCA covered the recent publication in our Research News Feed – you can check out the post here.
Many are familiar with the gluten challenge as it relates to the current hot topic (or dare I say, trend?) of self-diagnosis and the implications that come along with going gluten-free before being tested for celiac disease. People often equate the words “gluten challenge” with the sentiment, “Why would I put my body through torture if I know what unpleasant symptoms to expect?” I can certainly understand this perspective as I tend to suffer from a range of unwelcome digestive disturbances when gluten has a found a way into my diet.
But, I thought I’d take this opportunity to also share my personal views on why I believe an official diagnosis of celiac disease is so crucial, both for an individual’s health and the greater field of gluten-related disorders at large. I’ve actually covered this topic before, in the early days of Celiac Central: Bits and Bites. As you can see, I feel strongly about this particular subject.
1. Expert guidance!
Celiac disease is an autoimmune disorder requiring expert management and follow-up by a knowledgeable physician. Clinicians can closely monitor a patient with celiac disease to ensure that their celiac antibodies (blood work) return to normal and can keep an eye out for unrelenting symptoms that may indicate a need for additional testing or require supplementary treatment. A dietitian skilled in the gluten-free diet can ensure that individuals with celiac disease are meeting all of their nutritional requirements and can also assist in weight management, a challenge that in recent years researchers have identified as an important topic to discuss in celiac disease management. Registered dietitians or nutritionists can also use their expertise to determine if a patient is being accidentally exposed to gluten through routes such as misinterpreted ingredient labels or cross-contamination in the home or when dining out. (Did you know that gluten exposure is the most common cause of non-responsive celiac disease?) It’s important that people understand that the gluten-free diet is complicated and requires guidance. Relying on the internet and library books alone is no replacement for a healthcare provider.
2. More expert guidance.
What’s more, if celiac disease is not properly treated or managed, a person is at risk for developing other health complications involving their bone and reproductive health, as well as some cancers. Of course, there is also the chance that a person who has implemented a gluten-free diet because they think celiac disease is the culprit, may actually not have a gluten-related disorder at all and instead have a different underlying (and untreated) condition. Just as celiac disease can mimic the symptoms of other conditions, so too can other conditions mimic the symptoms of celiac disease. For more information on this, see this handout from Quest Diagnostics: Why Not Just Go Gluten-Free?
3. It applies to your family, too.
Further, celiac disease is genetic, which means that it often runs in families. Persons who have a first or second-degree relative (i.e. parents, siblings, aunts, uncles, cousins, grandparents) diagnosed with celiac disease need to be tested for the autoimmune condition as well. It’s particularly important that family members of people with celiac disease understand that they don’t have to have the same symptoms as their relative, or in fact, any at all, in order to have celiac disease.
4. We need collaboration.
Research in the field of celiac disease and other gluten-related disorders has grown exponentially in the last decade regarding subject matters such as disease signs and symptoms and the role of the gluten-free diet. However, one puzzle piece that remains missing is the number of undiagnosed versus diagnosed patients. Sure, many estimates abound but let’s face it – these are only estimates. It is difficult to ensure that persons are accurately diagnosed and managed if they are treating a disease on their own. In order to successfully advance treatment and testing, we need the assistance of the patient population.
It’s great to see people taking responsibility for their health and implementing what they believe to be a healthy lifestyle, but I think that it’s just as important that patients recognize the important role medical providers play in the management of their health. If your current physician has refused to test you for celiac disease, don’t stop there. You can share NFCA’s free Primary Care CME with them or seek out an experienced clinician. Ask support group members for a referral and read local articles about celiac disease to see which healthcare providers are considered experts in your area.
If I haven’t convinced you to consider an official diagnosis, then I at least ask you to understand the reality of having to undergo a gluten challenge if and when you decide to consult with your physician. In other words, know what you’re getting into before you go gluten-free on your own.
I welcome an improved gluten challenge like the approach Dr. Leffler and his colleagues have studied. I expect that this new approach will bring about improved patient compliance and willingness to undergo a gluten challenge, and hope that other clinicians begin implementing this approach too.
In my last post, I described where the first half of my spring travels took me – Orlando, Manhattan and Washington, DC. Now, I’m going to fill you in on an international trip and other domestic travels!
It was an honor to share findings from NFCA’s collaborative study with the Celiac Center at Beth Israel Deaconess Medical Center (BIDMC) and Lankenau Institute for Medical Research (LIMR), “The Use of Disease Symptoms Checklist in Self-Initiated Diagnoses of Celiac Disease and Non-Celiac Gluten Sensitivity,” as a poster presentation at an International Meeting on Coeliac Disease in Florence, Italy this past March.
Together, NFCA, BIDMC and LIMR aimed to understand the diagnostic experiences of patients who use the web, specifically NFCA’s Celiac Disease Symptoms Checklist, to prompt a self-initiated diagnosis of celiac disease or non-celiac gluten sensitivity. NFCA’s Celiac Disease Symptoms Checklist was designed to be a patient education tool that drives awareness of celiac-associated symptoms and conditions. Our ultimate goal was (and remains to be) that patients would use this tool to start a conversation about celiac disease with their healthcare providers. As a result, the Checklist provides the ample opportunity to study health behavior. You can learn more about the study, including the ability to view the poster itself, by heading over to NFCA’s Research News feed.
Of course, I realize that most people don’t have the opportunity to travel to Italy for work. What can I say, I’m a lucky girl and I know it.
For those of you who don’t know, I studied abroad in Florence during my junior year of college (pre-celiac days), so I know the city quite well. It was my first return trip since 2006 and the experience wasn’t anything short of awesome! Between attending presentations from some of the finest celiac experts in the world and enjoying gluten-free pasta and pizza in the country from where pizza and pasta hail, it was wonderful.
What’s more, Alice and I were beyond impressed with how the Italian foodservice industry understood celiac disease and handled gluten-free menu options. Here’s an example: more than once we were turned away from a restaurant who knew what gluten-free required, but were honest about not being able to control cross-contamination. The restaurateurs and servers understood that the gluten-free diet is a form of medical nutrition therapy and not the latest fad diet.
Case in point number two: On my last night in Florence I visited one of my favorite gelato spots, Festival Del Gelato, for an after-dinner treat. After suggesting that I pick a different flavor because of the risk of cross-contamination (chocolate hazelnut is popular!), the clerk asked if I would like a gluten-free cone instead of the normal cup and proceeded to grab an individually wrapped cone from a rack. How fun!
After Italy, my next stop was Little Rock, AR. Talk about night and day, huh?
In an effort to raise awareness of celiac disease and non-celiac gluten sensitivity among Arkansas dietitians practicing in the long-term care, foodservice and clinical settings, NFCA partnered with the Arkansas Dietetic Association (ArDA) and the Arkansas Dietetics in Health Care Communities (ArDHCC) to participate in their 2012 Annual Meeting & Expo.
After spending many months coordinating educational lectures, preparing a delicious gluten-free food sampling and organizing materials for the exhibit hall, I traveled to Little Rock where I spent 3 days. It was great to finally meet the ArDA and ArDHCC team with whom I had spent countless hours emailing and talking via the phone. I also had the pleasure of spending some time with Anne Lee, MSEd, RD, LD, Schar USA’s Director of Nutritional Services, and Dr. Lucy Gibney, President and CEO of Lucy’s, a GREAT Business Association Member. You can read more about my experience in Arkansas here.
Just two days after returning from Arkansas I made my way north to Boston to attend a presentation by Claudia Dolphin, a graduate student from Emerson College’s Master’s in Health Communication program, on a research project titled, “Screening for Health: Attitudes and Beliefs of Non-Participants in Disease Testing.” As an alum of Emerson’s Health Communications program, which is in collaboration with Tufts School of Medicine, I was honored to serve as a co-preceptor to Claudia over the past 6 months as she completed her Applied Learning Experience (ALE) project, the equivalent to a Master’s thesis. Here’s another twist to the story: the other preceptor providing guidance to Claudia was my own preceptor from my grad school days – Dan Leffler, MD, MS, the Director of Clinical Research at the Celiac Center at BIDMC in Boston. It has been pretty neat experiencing things come full circle.
Anyway, back to the presentation…
Claudia’s ALE project focused on conducting research on the perceptions of celiac disease among families where a member has been medically diagnosed. Her research sought to uncover the attitudes and beliefs of at-risk family members who have not been tested for the disease.
You may have noticed recruitment notices for research participants this past March and April and wondered what would become of the research. Well, now you know! Together with BIDMC, we are currently gearing up to implement Claudia’s work on CeliacCentral.org and into NFCA and BIDMC programming. Check back soon for an update on how you can help persuade your family members to take getting tested for celiac disease seriously.
In late May, my business travels ended with a trip out to sunny San Diego to attend Digestive Disease Week 2012, otherwise known as DDW, the world’s largest gathering of physicians and researchers in the fields of gastroenterology, hepatology, endoscopy and gastrointestinal surgery.
Many of you may have trouble staying awake just reading this meeting’s subject matter, but as a self-proclaimed nerd, it’s the one conference I look forward to each year. In addition to learning the latest and greatest research, it’s always a pleasure to catch up with the field’s different thought leaders, many of whom are members of NFCA’s Scientific/Medical Advisory Board. In addition to attending the lectures, DDW attendees also have the opportunity to visit the poster sessions in the exhibit hall and even speak with the study’s researchers if they happen to be standing at their poster. Each day, the posters are changed to reflect a new topic. Saturday, May 19th was designated for celiac disease.
Here are a few highlights from this year’s conference:
- Dr. Sveta Shah from BIDMC presented findings from the Boston group’s study “Celiac Disease Has Higher Treatment Burden Than Common Medical Conditions.” A notable conclusion included that “despite high treatment burden, celiac disease patients reported high disease specific health state.” As a result, Dr. Shah and her colleagues suggest that, “the burden of following the gluten-free diet may be a reason why adherence is limited and argues for the need for adjunctive therapies.” I personally think that this an important finding given what seems to be continually emerging research on the importance that quality of life plays in celiac disease management.
- Using data of 7,798 persons observed from the National Health and Nutrition Examination Survey (NHANES) 2009-2010, Jinjuvadia et al. discovered that an estimated 1 in 111 individuals in the U.S. population has celiac disease. The group also noted that celiac was more common among men than women. While the disease prevalence is certainly not “new” news, I thought their method was an interesting way to capture celiac disease in the U.S. And, given that we currently believe more females are diagnosed than males, I found their other discovery to be interesting, too.
- In the world of celiac disease, we are programmed to believe that gluten is evil. Judging by the work of a group of researchers led by Dr. Schuppan (the scientist who led the way in identifying tTG as the celiac disease autoantigen), gluten may not be the only “evil” protein involved. On Saturday the 19th, Alice and I had the privilege of meeting Dr. Zevallos, lead author of the abstract “Isolation of Alpha-Amylase/Trypsin Inhibitors From Various Plants and Their Ability to Activate Innate Immunity in Celiac Disease.” Zevallos explained that they recently identified non-gluten components of wheat, the family of alpha-amylase/trypsin inhibitors (ATIs), as powerful activators of innate immunity. This time, they took it one step further and defined three classes of grains, including naturally gluten-free grains, and their substitutes according to their ability to fuel innate immunity activity. Stay tuned for more details as their research continues.
- The North American Society for the Study of Celiac Disease (NASSCD), the U.S. national society of medical, scientific and allied health professionals in the field of celiac disease, held its first General Assembly meeting during DDW. Although I wasn’t able to participate since I’m not a clinician, I attended the reception following the meeting and can attest to the establishment being an exciting development. The new group will provide leadership in advancing the fields of celiac disease and gluten-related disorders by fostering research and by promoting excellence in clinical care, including diagnosis and treatment of patients with these conditions. It’s the first time that the U.S. thought leaders have come together to form a clinical and research focused collaboration.