Snapshot of the 15th International Celiac Disease Symposium

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!

– Kristin

Playing a Role in Research: Celiac Disease Drug Development & the Drug Information Association

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.

Learn more about DIA and the DIA Patient Advocate Fellow Program.

– Kristin

 

Why Can’t I Just Go Gluten-Free On My Own?

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.

-Kristin

Spring Travels: Around the World with Celiac Experts and Dietitians

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.

Vegetable pizza with spicy olive oil for lunch.

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!

My second favorite flavor, gelato di riso or rice pudding, on a gluten-free cone.

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.

Gluten-free food at the ArDA and ArDHCC meeting.

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.

The view from our hotel at Digestive Disease Week 2012.

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 19^th 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 19^th, 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.

– Kristin

Inquiring Minds Want To Know!

Some days, it seems that surveys are everywhere.  We are surrounded by a knowledge gap that surveys are meant to fill allowing all of us to move ahead to a better world. Some seem immensely trivial and others of grave importance.

Over the past few weeks, I have been involved in the world of surveys. Specifically, I have been working on a survey targeting anyone and everyone who is gluten-free. The point is to find out what experiences the survey taker has had with medication. By that, I mean medication of all sorts—prescription, over-the-counter, supplements, the works.

Yes, this survey is part of NFCA’s work on the U.S. Food and Drug Administration (FDA) grant to study Gluten in Medications.  We have written about this study on our CeliacCentral.org website, in our newsletter and more.

Right now, we are engaged in making sure that the distribution of this survey is as broad as possible so that we certainly gather as much insight as we can. The more responses we get, the more information we will have and, therefore, the more drugs we can test for gluten content and the more targeted that testing can be to reap the best, most noteworthy and effective  results.

And, yes, this survey falls into the “gravely important” category.

So, I have been poring over lists of groups that are good candidates to distribute the survey. The NFCA staff has been sending out email notices about the survey like crazy and, then, regrouping to expand and improve our communications plan.

We know how important this research is to all who are gluten-free and who want to be certain that, in the process of trying to get well or stay healthy, they are not sideswiped into illness inadvertently.  Whether someone takes one pill a day or 16, that individual doesn’t know how much gluten, if any, she is absorbing.

We also know that pharmacists are eager to help their patients. They need to know what is in the medication they are dispensing. People ask them questions; they want to know the answers. NFCA’s GREAT Pharmacists online training program is one way that we are moving the ball along that learning curve. This survey and the research that comes out of it will advance the Gluten in Medications program in a positive fashion.

So, back to the lists.  This is a one-in-a-million chance to get it right!

– Nancy

Gluten-Free, Research-Full: Celiac Disease Updates from Oslo

While Alice had secured her participation in the 14th International Coeliac Disease Symposium (ICDS) earlier this winter, it wasn’t until just one month before ICDS that it was decided I would be attending as well. Once I got the green light to book all the necessary details, I was beyond thrilled to join the 500 plus people expected to attend ICDS in Oslo, the capital city of Norway, which is home to 17-18 hours of daylight during the summer months.

On Friday, June 18, Alice and I began our journey abroad. After a three-hour delay on the runway thanks to heavy rain, thunder and lightening and, as a result, a missed connecting flight in Frankfurt, I arrived in Oslo 30 hours later. (A big thanks to Lufthansa for a delicious gluten-free meal and plenty of safe snacks!)

While the official presentations weren’t set to begin until the morning of Monday, June 20, Alice and I arrived in time to attend a special presentation on gluten sensitivity (GS) Sunday evening. ICDS 2011 started out strong with a pre-conference workshop on gluten sensitivity sponsored by Dr. Schar, the European market leader in gluten-free. Alessio Fasano, MD, and David Sanders, MD, led the 2-hour workshop on the emerging condition. (More on this later).

To break it down for those who were unable to participate, ICDS 2011 was divided into two parallel meetings: the International Symposium and the Clinical Forum. The Symposium served as a platform for the field’s top physicians and investigators to present “state of the art” celiac disease research, and the Forum provided an opportunity for patients, families of persons with celiac disease and healthcare professionals to learn the real-life impacts of the latest research in jargon-free language.

Over the course of 3 days, ICDS presented a total of 17 sessions, with much of the content overlapping between the two meetings in an effort to ensure the patient community received the best information. The Symposium lasted the full 3 days, while the Forum took place on Monday and Tuesday.

As is the case with conferences like ICDS, Alice and I found some presentations to be more intriguing than others. And since many sessions had overlapping elements, I thought the best way to share our experience with the community was to outline five recurring themes from ICDS 2011.

NFCA Medical Advisory Board member Dr. Michelle Pietzak enjoys a boat trip during ICDS 2011

1. Non-Celiac Gluten Sensitivity/Gluten Intolerance

The medical and scientific community has long agreed that celiac disease is an autoimmune condition triggered by the consumption of gluten. In recent years, the term “gluten sensitivity” has been coined to describe those individuals who also cannot tolerate gluten and at times experience gastrointestinal symptoms similar to those with celiac disease. Gluten sensitivity has been clinically recognized as less severe than celiac, and has been defined as “not accompanied by the concurrence of tTG or autoimmune comordibities.”

It was very exciting to see this topic receive a great deal of attention between Dr. Schar’s pre-symposium conference with Doctors Fasano and Sanders and a 1 1/2 hour oral seminar during Tuesday’s International Symposium. Doctors Fasano and Sanders discussed the following key points about non-celiac gluten sensitivity:

• Gut inflammation is not present, which is unlike celiac disease.
• There is no diagnostic tool for non-celiac GS.
• Prevalence in University of Maryland’s Center for Celiac Disease Research ’s
  practice is estimated to be 1 in 17 (6%).
• Dr. Fasano explained that in order to diagnose a person with non-celiac GS, his Center uses a double blind gluten-free diet intervention lasting for 3 weeks.

Dr. Schar shared the success of their First Consensus Conference on Gluten Sensitivity held in London earlier this year, and also announced the establishment of the Dr. Schar Institute, which is a new point of reference for medical and healthcare professionals in the areas of celiac, gluten sensitivity and gluten-related disorders in general. All in all, it was great to see that the research field is catching up to the publicity of the non-celiac version.

Despite the agreement that a non-celiac version of a gluten-related disorder exists, it is clear that the medical community lacks consensus on the spectrum and terminology for this field. Perhaps the best example is this: the pre-conference workshop used the term “gluten sensitivity” while the ICDS session was entitled “non-celiac gluten intolerance.”

Great photo of Alice (left) at ICDS 2011! Courtesy of Jonas Meek and ICDS 2011 Local Organising Committee.

2. Strong Need to Develop Adequate Programs for Follow-up and Management

Dan Leffler, MD, MS, Director of Clinical Research from BIDMC and NFCA Scientific/Medical Advisory Board member, gave the opening lecture for Wednesday’s session on Clinical Presentation, Follow up and Imaging. Dr. Leffler began his talk by noting that original faith in the gluten-free diet halted research on therapeutic treatments. As he went on to recognize that lifelong adherence to the gluten-free diet ranges 40-75% (yes, a huge range!), my mind wandered to those whose compliance is so varied. Were these people without symptoms, thus not seeing the immediate need for the diet? Or individuals who could not afford the hefty grocery bill that comes with the diagnosis?

Combined with the fact that the blood tests are poor measures of the diet’s success, it’s evident that a better model of disease management be implemented among the celiac population. And Dr. Leffler’s call for the medical community to develop disease management guidelines couldn’t have been clearer. With its disease-related health no different than diabetes or inflammatory bowel disease, two conditions that have management protocols in place, it’s time for celiac to step up to the plate.

A final comment from an audience member led to the conclusion that education among primary care providers is still sorely needed, for both the diagnosis and management of celiac disease. In fact, ICDS attendees from across the world agreed: the lack of awareness and education among primary care physicians is what keeps millions of celiac sufferers in the dark and untreated for so long. [NFCA offers a first-of-its-kind continuing medical education (CME) program for primary care providers at www.CeliacCMECentral.com. Learn how you can encourage your doctor to complete this free online course.]

3. Epidemiology

Some of you may be familiar with the Swedish Epidemic, which occurred from 1973 to 1997 when there was a fourfold increase in symptomatic celiac in children younger than 2 years old. Anneli Ivarsson, MD, PhD, of Umea University and the Prevent Coeliac Disease initiative (and author of the just published study on the global mortality of undiagnosed celiac disease in children). For those who are not familiar with the Swedish Epidemic, here’s the background:

Before the Epidemic, a national recommendation was made to postpone introduction of gluten from 4 to 6 months of age, an interval during which breast-feeding was at large discontinued in the country as well. As a result, the National Swedish Guidelines for infant feeding practices were updated to the following: Babies should be breastfed for 4-6 months while avoiding gluten-containing foods before 4 months. Gluten should be introduced between the 4 and 6 month window, while still breastfeeding.

Dr. Ivarsson noted that in 1995 the disease’s prevalence returned to its original risk, which strongly suggested that prevention is possible. Today, it is estimated that 1 child in every Swedish class has celiac, with the majority undiagnosed. Talk about a resonating statistic!

In addition to the prevalence of celiac disease, the Epidemiology session included presentations on prevention strategies, such as breastfeeding and dietary intervention. One particular highlight was the overview of Prevent Coeliac Disease (CD), a multicenter initiative in 10 European countries whose objective is to “significantly reduce the number of people suffering from celiac disease in Europe, by developing primary prevention strategies for celiac disease.” To learn more about Prevent CD, check out their website.

I couldn’t fit all the information into one post, so stay tuned for the next installment of my ICDS coverage. On the agenda: Personalized Medicine, Quality of Life, and more!

See more photos in the official ICDS 2011 album.

Celiac Disease Testing at Home (Or the Office)

[Update! Dr. Dan Leffler is hosting a LIVE Teleseminar about this research study on Monday, July 25th, 3-5 p.m. ET. Dr. Leffler will also talk about the pharmacist’s role in distributing kits and educating consumers. Pharmacists are encouraged to register at www.pharmacybusinessceliacwebinar.com. While you’re at it, learn more about gluten in medications and NFCA’s GREAT Pharmacists training program on CeliacCentral.org.]

I don’t care for needles, which is why I was thrilled when our friends at Beth Israel Deaconess Medical Center (BIDMC) asked us to try out the Biocard fingerprick test kit. The at-home test is part of a research study Dr. Dan Leffler, Director of Clinical Research for The Celiac Center at BIDMC, and his team are conducting.

“While not currently approved by the FDA, these tests are still being researched as it is both imperative and necessary to explore any new possibilities for increasing celiac diagnoses in the U.S.,” said Dr. Leffler, noting the importance of this study.

My daughter has celiac disease, and our family’s trusted clinician, Dr. Ritu Verma at The Children’s Hospital of Philadelphia, recommends screening every 3 years for first degree relatives who have the celiac gene. For me, it was about time for a follow-up antibody test, so I volunteered.

Ready for testing!

When the kit arrived, the staff and I gathered around and disassembled the package. I admit that the instructions were a little difficult to understand (especially because we had a reproduced copy and it was hard to see the photos). But once we understood the process, it was simple as could be.

It's not as scary as it looks.

You place the small, plastic device on your finger and release the trigger. There was a startling pinch, and then a numb feeling that lasted longer than I expected. The kit includes a small tube in which to collect the blood sample, which is then mixed with a solution and dropped onto a test strip that will display a control line. If antibodies are present, the control line will be joined by an additional line after 10 minutes.

While I am thankful that I have access to the most amazing gluten-free food (Shout out to Main Line Baking Company, which made Nancy’s delicious birthday cake this month!), I was still relieved when the 10 minutes passed and only one line appeared on the strip.

Preparing the solution.

I thought a lot in those 10 minutes about what it would be like for someone who doesn’t know anything about celiac disease to see a second line appear on the test strip. What kind of educational materials would be important to include in such a kit to empower possible celiac patients? Getting the right information is critical, but what’s the best way to share it?

What are your thoughts on this form of testing? Do you think self-diagnosis would increase if kits like this were readily available, and is that a concern? Weigh in with your comments below.

– Jennifer