Posts filed under ‘Kristin’

Spring Recap: Traveling for Celiac Disease Education and Advocacy

This past spring was jam packed with business travels. There were times when I felt as if my “out of office” auto response would be up forever! So, it’s safe to say that I have good reason for being MIA on the staff blog. Let me backtrack so I can keep everyone in the loop.

Starting in February, Alice and I traveled to Orlando to participate in the American College of Preventive Medicine’s (ACPM) 2012 annual meeting. When we weren’t exhibiting at NFCA’s booth, where we explained the importance of patients not going gluten-free before being tested for celiac disease and clarified that yes, gluten sensitivity is real, we sat in on lectures from leading preventive medicine experts like Dr. Mark Hyman and learned how media outlets determine what news gets covered.

NFCA Exhibit at ACPM 2012

NFCA’s booth at ACPM 2012

After that, it was back to the Northeast for another round of conferences. Cheryl joined me in attending Columbia University’s Intestinal Immune-Based Inflammatory Diseases Symposium where we snacked on fresh rolls from Free Bread Inc. (a personal new favorite!). The Celiac Disease Center at Columbia University continually organizes meetings that are educational and fun, allowing for the providers and patients to mingle. And, of course, it’s always a pleasure catching up with experts like Dr. Jonas Ludvigsson. You can read a recap of Cheryl’s experience and catch an interview I held with Dr. Ludvigsson after we parted ways in March.

Special note: While listening to some of the world’s finest celiac experts discuss topics such as the emergence of non-celiac gluten sensitivity and the role of the PillCam in the diagnosis and management of celiac disease, I learned the exciting news that an abstract from the NFCA was accepted for a poster presentation at the International Meeting on Coeliac Disease, Mastering the Coeliac Condition: From Medicine to Social Sciences and Food Technology. After months collaborating with the Celiac Center at Beth Israel Deaconess Medical Center and the Lankenau Institute for Medical Research on the data collection and analysis of the study “The Use of Disease Symptoms Checklist in Self-Initiated Diagnoses of Celiac Disease and Non-Celiac Gluten Sensitivity,” it was great to hear that our work would be recognized. (And judging from the theme of this post, if you think that my spring travels also involved a trip to Florence, Italy, you are correct. Watch out for my recap later this week).

NFCA staff and volunteers at DDNC Public Policy Forum

Our Awareness All-Star fundraiser Jack Simpson and his mom Cheryl Lynne joined us at the DDNC Public Policy Forum.

The very next morning after returning from NYC, I hopped on a train to Washington, DC, to meet up with Alice and participate in the Digestive Disease National Coalition’s (DDNC) 2012 Public Policy Forum. This was my second time joining in the annual meeting where patients, industry representatives, healthcare providers, lawmakers and their legislative staff come together for two days of educational programs, legislative updates and advocacy training. Each year, the Digestive Disease National Coalition (DDNC) briefs participants from around the country on Federal healthcare legislation and policy and provide the opportunity to educate Members of Congress on issues of concern to the digestive disease community. In essence, it provides an opportunity to see the government in action.

This year, our colleagues from The Children’s Hospital of Philadelphia’s Center for Celiac Disease joined the Public Policy Form. It was great to have NFCA Scientific/Medical Advisory Board Member Dr. Ritu Verma and Patricia A. Bierly, CRNP, on hand to share the clinical perspective of celiac disease with legislators.

Stay tuned for more tales from my spring travels, including:

  • Mastering the Coeliac Condition: From Medicine to Social Sciences and Food Technology in Florence, Italy
  • Arkansas Dietetic Association’s (ArDA) Annual Meeting and Expo and the Long-Term Care Seminar in Little Rock, AR
  • Research presentation from graduate student of Emerson College’s Health Communications program in Boston, MA
  • 2012 Digestive Disease Week in San Diego, CA

– Kristin

June 11, 2012 at 11:30 am 1 comment

Q&A with Fulbright Scholar and Celiac Researcher Dr. Jonas Ludvigsson

You may recognize Dr. Jonas Ludvigsson from NFCA’s Research News. A renowned researcher in the celiac disease field, Dr. Ludvigsson has co-authored some of the most cutting edge studies on this topic.

Currently, Dr. Ludvigsson is on a Fulbright Scholarship at the Mayo Clinic in Rochester, MN. NFCA Healthcare Relations Manager Kristin Voorhees asked him a few questions about his impressions of celiac disease research in the U.S. compared to his home country, Sweden.

Dr. Jonas Ludvigsson

Dr. Jonas Ludvigsson

NFCA: How is Swedish celiac disease research different from U.S. celiac research?

Dr. Ludvigsson: Several things are different. The awareness of celiac disease is very high in Sweden (together with Finland, we have perhaps the highest awareness in the world). This means that patients are likely to be diagnosed at an earlier stage, since general practitioners test frequently for celiac disease. Hence, a larger proportion of the Swedish celiac community has been diagnosed (compared to the U.S. population).

Another big difference, however, is the existence of the personal identity number (or National identification number).

This number is assigned to all Swedish residents and is unique for each individual. This means that we can trace every individual’s health for the last 30-40 years, and often longer. It also means that people are not “lost” from research, and that we can study thousands, sometimes millions of patients at the same time. For instance, I carried out a study on the risk of preterm birth in children born to mothers with celiac disease where we could compare the risk of preterm birth in 2,000 mothers with celiac disease, to the risk of preterm birth in 2.8 million Swedish women without celiac disease.

Through the personal identity number I have been able to identify about 29,000 patients with celiac disease in Sweden, and we now compare them with almost 150,000 individuals without celiac disease. This has allowed us to calculate the risk of death and cancer in patients with celiac disease. Celiac disease, even in those with a diagnosis, increases the risk of death, but the risk increase is very small. In 1,000 individuals without celiac disease, 7 will die in the next year (0.7%), while in 1,000 celiac patients, 10 (1%) will die next year. 10 is more than 7, but still the risk increases are very small.

NFCA: How can we improve celiac disease awareness in the U.S.?

Dr. Ludvigsson: I think the general awareness of celiac disease is increasing in the U.S.; to a large extent due to the high quality research done in this field in the US, both clinical research and experimental research. If there is one thing that I believe could help American research (and indeed research all over the world) it would be to agree on the definitions of celiac disease and related disorders such as non-celiac gluten sensitivity. Our latest paper was a collaboration between researchers in America and elsewhere, and we feel this could be the beginning of even more international collaborations. (Read more about this paper on celiac disease terminology.). Another thing could be to establish collaboration between celiac centers and share experiences. I also think that the work of the NFCA is great – being present at meetings, on the Internet, on Facebook, etc.

NFCA: Where do you think celiac disease research is headed?

Dr. Ludvigsson: I think there are three areas where progress is really needed:

1) Is undiagnosed celiac disease dangerous? And if it is, how dangerous is it, and in what regards?

2) How important is the dietary treatment? I think it is important, but it will not prevent all complications and associated disorders.

3) What is non-celiac gluten sensitivity? Is that dangerous to the individual?

Do you agree with Dr. Ludvigsson’s three points? How do you think the U.S. can improve celiac disease diagnosis?

April 18, 2012 at 10:01 am 6 comments

A Special Delivery: Tweason’ale Gluten-Free Beer

One day last week, NFCA’s Vice President Jenn walked into our shared office with an outstretched hand that was holding a special delivery and said, “This is for you. Mike Savett asked that I give it to you.”

Any takes on what the “special delivery” entailed? Well, if you guessed Dogfish Head’s new gluten-free beer, Tweason’ale, you’re right!

Tweason'ale Gluten-Free Beer

Dogfish Head's new gluten-free beer

Back in January when Mike of Gluten Free Philly broke the news that the craft brewery would be coming out with a new gluten-free beer, I was ecstatic.

I was diagnosed just 2 months after completing my Bachelor’s degree from James Madison University in 2007, at the exact time I was beginning to discover the taste of real beer. (And, no, that wasn’t a dig at gluten-free beer. Let’s just say the quality of beer you consume during college is not always premium.) So needless to say, my desire to expand my taste in beer was halted, and as far as I knew, it was halted forever.

That is definitely not to say that I haven’t enjoyed any of the ciders or beers that abound in the gluten-free marketplace. The availability of Redbridge at every Phillies game is a serious plus; having the option to sip a banana-bread style gluten-free beer at the GREAT-trained Devil’s Den in South Philly is fabulous and truly delicious; I enjoy the occasions when my dad picks up whatever new limited edition Woodchuck Cider has for the current season just so we can have a taste test; and, of course, when the Crispins of the world send a special package to our very own NFCA office!

But, something has definitely been missing, which is why I was ecstatic to have Jenn hand me a Tweason’ale. I quickly stuck the single beer in our office’s minifridge and shot off a quick emailing thanking Gluten Free Philly for his gift.

The next morning I came into the office to find an email from him with no actual content, but a single word in the subject line – “So?”

For anyone that has not had the opportunity to sip on Dogfish Head’s newest gluten-free craft beer, I suggest you run to your local distributor. I’m happy to say that this fun, craft-like gluten-beer has my vote!

– Kristin

February 7, 2012 at 1:41 pm Leave a comment

A Gluten-Free Holiday Treat, No Baking Required

I’m always prepared to bring an appetizer, salad or main dish to social gatherings and holiday functions. Like many with celiac disease, I quickly learned that if I wanted to eat a safe gluten-free meal, it was up to me to tote along at least one item I knew I could eat.

But dessert? Despite my sweet tooth, more often than not I have opted to forgo dessert simply because baking and I are not friends. So fruit has served as my go-to pick, and the nutritional benefits are always a plus. Alas, sometimes a fruit salad, no matter how fresh the ingredients, just won’t cut it. This Christmas, I wanted to join my family at the dessert table with something more substantial than pineapple and berries, even if topped with whipped cream.

Enter these no-bake coconut balls.

Gluten-Free No Bake Coconut Balls

Gluten-Free No Bake Coconut Balls

I’m sure you can guess that a recipe with minimal ingredients and without an actual “baking” process were both requirements. Fortunately, I stumbled across this simple recipe while performing the perfunctory Google search: No Bake Coconut Balls

The recipe called for nut butter plus chocolate chips or nuts of your choosing, but I opted for a combination of the two. My secret ingredient? Justin’s Nut Butter. This brand has been a pantry staple of mine for the past 2 years so I knew that their Chocolate Peanut Butter flavor was delicious. (If you are not already familiar with their line of nut butters, please head to your local grocery store immediately).

Making Gluten-Free Coconut Balls

All you need for a delicious gluten-free dessert.

Not only did they fulfill my sweet tooth, but my family was impressed too. Who said you need flour to “bake” Christmas cookies?

– Kristin

Related Content:

December 27, 2011 at 2:26 pm Leave a comment

Beer, Burgers and Bok Choy: Gluten-Free at Friedman’s Lunch

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!

Estrella Damm Daura

The "World's Best Gluten-Free Beer"

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?

Gluten-Free Burger at Friedman's Lunch

My first gluten-free cheeseburger at a restaurant!

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!

– Kristin

November 11, 2011 at 12:29 pm Leave a comment

“The Great Explainer” of Celiac and Gluten-Free Information

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.

Expression Magazine

NFCA's Kristin Voorhees is part of this cover story!

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).

November 3, 2011 at 1:21 pm Leave a comment

Guest Post: Dr. Jonas Ludvigsson Summarizes the UEGW Celiac Disease Interest Group Meeting

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.

Dr. Jonas Ludvigsson

Dr. Jonas Ludvigsson

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).

Stockholm

Stockholm, Sweden

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

Download the list of references for this article.

November 1, 2011 at 4:05 pm 3 comments

Older Posts Newer Posts


Recent Posts

Follow Us on Twitter

Error: Twitter did not respond. Please wait a few minutes and refresh this page.

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 175 other followers

Gluten in Medications Survey
Nourished Blogger Conference