Posts tagged ‘prevalence’
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.
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?
Last week, I gave you a wrap-up of the food and people I encountered at the Intestinal Immune-Based Inflammatory Diseases Symposium at Columbia University on March 2-3. While I had a fine time networking and meeting others in the gluten-free community, my main reason for attending was to hear from prominent celiac disease researchers. Needless to say, I was an attentive listener.
The sessions in the Patient Program covered everything from the basics of celiac disease to the latest research in therapeutics. Here are a few takeaways that perked my ears:
The No. 1 cause of poor response to a gluten-free diet is gluten exposure.
7-30% of patients with celiac disease reported continued symptoms on a gluten-free diet. The reasons can vary, from lactose intolerance to bacterial overgrowth to microscopic colitis. But as it turns out, most people simply aren’t following the gluten-free diet as diligently as they should, or they are ingesting gluten unknowingly. Another factor can be having the wrong diagnosis, so doctors stress the importance of confirming an individual’s celiac diagnosis. Which leads into the second point…
Reviewing biopsies is essential.
A few months ago, a study revealed that many gastroenterologists do not take a sufficient number of samples during a small intestinal biopsy. The presenter noted that several factors play a role in making a successful diagnosis: orientation, interpretation, number of biopsies and location. That means if too few biopsies are taken, or if the small intestine hasn’t been examined as thoroughly as it should be, it could affect the diagnosis that the pathologist makes.
Children are not little adults.
A proper celiac diagnosis is critical for child development. A child diagnosed with celiac disease early on will most likely grow to their full potential. A child diagnosed later in life may be permanently stunted from so many years of malabsorption. How exactly does this malabsorption affect their development? Iron deficiency can lead to poor concentration or irritability; calcium deficiency can lead to poor bone calcification and zinc deficiency can lead to growth failure and sexual immaturity.
There’s a lot to learn about the autism/gluten-free connection.
I was eager to hear Columbia’s presentation about the potential benefits of a gluten-free diet for those with autism spectrum disorders (ASD). It was the perfect build up to NFCA’s ADHD and autism webinar that took place the following day. While research thus far has been inconclusive, it appears that the gluten-free diet may help a subset of those with ASD. More research is needed to identify these subgroups and the specific proteins in gluten they’re reacting to.
Discovering risk factors is the No. 1 step to prevention.
There are a number of potential therapies currently being researched, and they each aim to accomplish one of three goals: Reduce exposure to gluten, reduce intestinal permeability or reduce immune activation. However, the question of how to prevent celiac disease remains. As healthcare turns from a model based on treating symptoms to one based on promoting wellness and prevention, we can expect this to be a focus. The answer lies in identifying more of the risk factors, because once researchers know what causes the disease, they can focus on ways to stop it.
I wasn’t thrilled when I woke up to 3 inches of snow and slush last Saturday morning. I was expected at Whole Foods on the Upper West Side of New York City by noon-ish, and the drive from Philly just got a lot more treacherous.
But, as Nancy would say, “Press on!” And so I did. Through the slush. Past the snow plows. Around the cars parked snuggly in their spots.
I was headed to Whole Foods for the Gluten-Free Education Fair, an afternoon event that capped off a week’s worth of gluten-free samplings and specials. The Fair was organized by Erin Smith, one of our top blogger friends and organizer of the NYC Celiac Disease Meetup Group, so I couldn’t let her down.
Well – no surprise here – I made it. And despite the unsightly weather, we had a good turnout. NFCA’s table was placed right at the door, a chilly but prime spot for grabbing customers as they entered. Best of all, I was sandwiched between cookbook author Annalise Roberts and the team from Dr. Schar USA, both of whom brought gluten-free samples. As we all know, everyone loves free samples, and while the customers waited in line, I talked to them about celiac disease and gluten sensitivity.
For the most part, everyone had heard about the gluten-free diet (though I did get a few “So, what is gluten?” inquiries). Many customers had also heard of celiac disease, and those who hadn’t were astonished to learn how many symptoms it manifested. There were customers who had celiac disease, others who had a friend with gluten sensitivity, and, of course, there were the few that said “Oh, I kind of eat gluten-free. You know, it’s just healthier.”
The Gluten-Free Education Fair truly showed the breadth of people who are eating gluten-free, and how comfortable they are with the diet. A man diagnosed celiac for 10 years told me how much easier it’s gotten. A woman with a different autoimmune disease said she’s trying a gluten-free diet to see if it helps her symptoms. An entire family went gluten-free on behalf of one celiac child, and they’re still discovering new foods.
One customer in particular had been diagnosed with celiac less than 1 year ago. She tried each sample and collected information like a kid in a candy store. If there were an award for “Most Stoked About a Gluten-Free Cracker,” she would win it.
Fortunately for her, there were plenty more foods to try. Glow Gluten Free and Kettle Cuisine, two of NFCA’s GREAT Business Association members, were handing out samples in the store aisles. Posh Pop Bake Shop and Free Bread, Inc. were also among the vendors at the fair.
A special thank you to Erin and Whole Foods for organizing this great event. We hope this is the first of many!
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.
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).
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
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.
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.”
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.]
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!
I am a true believer in the saying “Everything happens for a reason.” So when I was diagnosed with type 1 diabetes at age 6, and celiac when I was 15, I knew my path was headed toward a profession in healthcare.
I will be a senior at the University of Delaware in the fall and will graduate with a dietetics degree next spring. When people ask me what my major is, there is a lack of surprise in their response when I tell them it is nutrition. I have been managing my diabetes and celiac disease for so long that I can’t imagine getting involved with anything else.
After switching endocrinologists when I was in my teens, my new doctor did a routine test for celiac. There seems to be a link between type 1 diabetes and celiac, so they knew to check for it. My dad was diagnosed with celiac 2 years later. Unfortunately, he had been suffering from the symptoms for quite some time. If it had not been for my diagnosis, he probably still would not have been tested or know what was wrong. This experience led me to want to do so much for the awareness of this disease.
I was extremely happy when I received the opportunity to intern at the National Foundation for Celiac Awareness (NFCA) this summer. When I was diagnosed with celiac 6 years ago, I did not have any support groups or people to talk about it with. I love what NFCA is doing for the celiac community and cannot wait to work with them this summer.