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Thursday, October 12, 2017
The Bold Beyond Celiac Research Symposium

Many of my readers often tell me that the celiac events are too far or too expensive to attend. Now is your chance to participate in real time!

On November 9, 2017, join Beyond Celiac in person or via webcast for The Bold Beyond Research Symposium. They are calling this the "premier event for celiac research!" It is free to participate, but registration is required. Click here to register today.



The Bold Beyond Research Symposium
November 9, 2017
5:00PM — 6:30PM EST

Drexel University 
Papadakis Integrated Sciences Building 
Chestnut St & S 33rd St
Philadelphia, Pennsylvania 19104

Moderated by Alice Bast, Beyond Celiac CEO, with panelists:

Ciaran P. Kelly, MD, Director, Celiac Center and Director, Gastroenterology Fellowship Training, Beth Israel Deaconess Medical Center; Professor of Medicine, Harvard Medical School

Anthony J. DiMarino, Jr., MD, Chief, Division of Gastroenterology & Hepatology, Thomas Jefferson University Hospital

Ritu Verma, MD, Section Chief, Gastroenterology, The Children's Hospital of Philadelphia; Assoicate Professor of Clinical Pediatrics, Perelman School of Medicine at the University of Pennsylvania

The symposium will also be webcast, offering viewers nationwide the opportunity learn about the most current celiac disease research developments. Local and national corporate sponsors, including media sponsor CBS Radio Philadelphia, will support the event.

Click here to register today.

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Wednesday, August 2, 2017
Gluten-Free Fun in August: Proceed with Caution
When I started this blog all the way back in 2007, the celiac and gluten-free blogging community was quite a different place. There were only a handful of us in the world! There was no Instagram or Twitter and Facebook was still mostly a college-only social platform. There was most definitely no such thing as paid posts. I simply wanted to share my story of living with celiac disease since 1981 and how I was navigating the gluten-filled world.

My, how times have changed.

Today, the gluten-free blogging community has ballooned tremendously and almost has become an information overload. There are celiac bloggers, non-celiac gluten sensitive bloggers, Fodmappers, plant-based bloggers, and so many more niche blogs that I cannot even keep track. There are blogs giving great scientifically-backed information while others are using scare tactics. It really has become an over-saturated and crazy place that has become really difficult to navigate.

My friend Annalise wrote a fabulous post a few years ago called The Wild West of Celiac which is a great summary of the gluten-free blogger world today. It sometimes feels like a free for all out there in the world wide web and Annalise summarizes this perfectly in her article. In just the past week, I have seen too many products or services mentioned that are unsafe for people with celiac. These posts include:

  • products documented to make people with celiac sick yet being promoted to celiacs
  • products that have no FDA approval for treating gluten exposure
  • products that claim to test for allergens from the comfort of your own home without needing to see a doctor (WTF?) 
  • products that will "cure" your celiac through a cleanse (It won't!)
  • products that are unnecessarily being marketed and labeled as gluten-free (water, eggs, clothing, accessories, oh my?!?)


I am not only disappointed in these posts but I am also really worried for those who are newly diagnosed and hungry for any information they can find. This information could be VERY dangerous and make someone with celiac very sick. I want you to all proceed with caution. If you find an article that is too good to be true, it probably is. If a product is being pushed, look to see if the blogger is being compensated in some way. It is an FTC regulation that all compensation must be disclosed to readers!

ALWAYS see a doctor. PERIOD!

Over the next few weeks, I am going to do my best to debunk some of the stories floating around that are putting celiacs at risk or that are just plain false. I am keeping true to my roots of this blog by wanting to help those people living with celiac. I want to share with you links that are backed by science and not by dollars. Basically, I just aim to help those with celiac disease to protect themselves from being duped or glutened. If the post says you can eat a gluten-filled product in a different country or that a little bit won't hurt, IT IS WRONG. Please be careful and double check your sources.

What stories do you want more information on? What posts are floating around that make you go "HMMMM??" Tell me below and I will start digging deep.

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Thursday, March 31, 2016
CDF National Conference & Gluten-Free EXPO Early Bird Pricing Ends Tomorrow
Join me at the Celiac Disease Foundation National Conference and Gluten-Free Expo on April 30-May 1, 2016. This is sure to be an informative and exciting event for the celiac community. Saturday the 30th has a list of top celiac disease experts and Sunday, May 1st has a gluten-free expo where you can eat and meet with your favorite brands. There are also some expo hall speakers, including me! Join me as I talk all about planning your gluten-free vacation and top celiac travel tips.



CDF National Conference & Gluten-Free EXPO
Saturday, April 30 - Sunday, May 1, 2016
Pasadena Convention Center, Pasadena, CA

The CDF National Conference & Gluten-Free EXPO will offer invaluable insight from world-renowned experts. If you have celiac disease or gluten sensitivity, or if you care for someone who does!

Your $99 full-day Conference ticket includes:

  • Admission to all of our thought-provoking presentations
  • Opportunity to ask questions of experts and talk and share with your peers
  • Complimentary 100% gluten-free breakfast AND lunch
  • Complimentary 2-day access to our massive FOOD. FACTS. FUN. Gluten-Free EXPO 
Click here to get more information about our lineup of speakers and to register.  

REGISTER TODAY

For more information, visit celiac.org/cdf-conference or email info@celiac.org

See you there!

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Wednesday, May 20, 2015
International Clinical Trials Day
Today is International Clinical Trials Day. Clinical trials are a critical part of healthcare research and development across the globe. These trials can include testing treatments, new medications, and new approaches to healthcare in humans. There is a tremendous amount of research involved with getting a new medication approved by the FDA and people who sign up for clinical trials are a vital part of this process.

While I have been part of focus groups and online surveys, I have never personally participated in a clinical trial. Recently, I learned about CureClick through the WEGOHealth advocacy community. CureClick is an interesting new web portal that shares information about clinical trials in general as well as including information about recruitment for active clinical trials. I learned a lot about clinical trials from this website and it helped me understand how, as patients, we can help inform our own medical futures. According to CureClick "Participants in clinical trials can play a more active role in their own health care, gain access to new research treatments before they are widely available, and help others by contributing to medical research."

To my knowledge, there are a few clinical trials specifically aimed at finding a medicinal aid to those of us living with Celiac Disease; CureClick just doesn't list them yet. The good news is that I am CureClick Advisory Board Member and I have a lot of communication with the founders of the website. I have already asked them to share any celiac-related trials with me immediately which I will then pass along to you. Right now, CureClick is currently recruiting for trials about severe asthma,  mild/moderate asthma, high cholesterol and risk factors for heart disease, and Type 2 diabetes.

Many people are excited about the possibility of drug therapy for celiac disease. Personally, I do not know if I would ever take a pill for celiac treatment but it is nice for others to have options. I am happy to see medical researches even paying attention to Celiac Disease. It is empowering to think that participating in a celiac disease clinical trial can help shape the medical future of our disease.

Please visit CureClick.com for more information about clinical trials and learn more today! Stay tuned to Gluten-Free Fun for any celiac disease trial announcements. You will be the first to know as soon as I do!



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Tuesday, November 25, 2014
Get Paid to Eat Gluten!
Last night, I received a late email from the Celiac Disease Center at Columbia University. The email was a request for participants in a research study. Here is the body of the email: 

Does Gluten Make You Sick? Adults with celiac disease or non-celiac gluten sensitivity needed for a research study! 

Why?
To find out more about the bacteria that live in your colon and on your skin. 

What Is Involved? 
Eat 2 slices of bread a day for 2 weeks (“gluten challenge”) Do 3 blood tests, take 5 skin swabs and submit 5 stool samples. 

Will I be paid? You will receive $150 for your time 

Let me preface this post by saying I have a lot of respect for the doctors at the Celiac Disease Center. I have known the doctors and staff at the Celiac Disease Center for years. Many of my NYC Celiac Meetup members have been diagnosed with celiac disease by the doctors at this Center. I hold an annual fundraiser for the Celiac Disease Center. I always suggest the center to people in NYC and the surrounding areas looking for answers about their gastrointestinal health.

But when I read this email last night, I couldn't help but be confused and slightly offended. I understand research needs participants, but how do you monetize someone's health and well being? How do you put a price on pain and suffering people with celiac need to endure in order to further your research? Is $150 enough money for me to be violently ill for 2 week of gluten hell?




I was sure I was not alone with my feelings, so I took this email and posted it on both Twitter and Facebook. WHOA. The overwhelming response from my readers is that they are also offended and many are especially angry. Here are a few examples:

"$150 for your "time"? I'm very curious if the pioneers of this study have celiac themselves, and if they know how it feels to have the disease and eat 2 slices of bread for even just one day. The years leading up to my diagnosis that I unknowingly suffered the disease and ate gluten were some of the hardest years of my life, affecting me both physically and mentally. You can't put a price on your health and extreme discomfort. Celiacs who eat gluten for 2 weeks will continue to feel the affects for longer than just those 14 days, some more severely than others."
"a mere $150? seriously?? I couldn't do it for $150,000 -- it is not worth it!" 
"Could have done it when newly diagnosed but not now. I do understand the need for research subjects, though. I wish there was a lot more research into treating celiac." 
"If they paid me the money I would miss for not working for a month or more, plus pain and suffering, maybe. And a full skud of extra soft TP."
 "NO, NO, NO, NO!"

Again, I understand that doctors need to do research. I just wonder how exactly how much damage two-weeks worth of gluten would do to my body. Do doctors even know the long-term affects of feeding a celiac gluten after they have healed their body? Does this two-week challenge increase the chances of additional intestinal complications such as cancers, infertility, and more?

I went through a gluten challenge (intentionally eating gluten) thirty years ago when I was six years old. The doctor scheduled the gluten challenge for a Friday. My parents had to tell my teachers that I was allowed to eat gluten for the day. I vaguely remember getting violently ill by the end of day one and stopping the challenge that weekend. It was the only time in my life that the doctor gave me the green light to eat gluten and if a doctor ever told me to eat gluten again, I would find a new doctor immediately.

As I have gotten older, my reaction to gluten has become more severe. I would not be able to complete day one of this Celiac Disease Center study. I would be on the floor of the bathroom with the gluten coming out from all ends. I would be dizzy, foggy, and confused. I would be tired and achy. I would be MISERABLE.What is my suffering worth? It's definitely not worth a measly $150.

Join the Facebook conversation. I want to hear from you! Put your comments below. I want to know what you think!





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Friday, January 17, 2014
Chronic Intestinal Damage Raises Hip-Fracture Rate in Celiac Disease Patients
I received an interesting press release from the Endocrine Society yesterday. Apparently this society "is the world’s oldest, largest and most active organization devoted to research on hormones and the clinical practice of endocrinology." Endocrinology is the branch of medicine that focuses on the endocrine system which includes the thyroid, hypothalamus, pituitary gland, ovaries and testes, pancreas and more.

As someone living with both Celiac disease and a thyroid disorder, I find this society's information and this study interesting. Please read on...



Chronic Intestinal Damage Raises Hip-Fracture Rate in Celiac Disease Patients
Gluten-free diet reduces inflammation, may lower risk of complications

 Chevy Chase, MD–Celiac disease patients who experience chronic damage in the small intestine may be more likely to break a hip than those whose intestinal tissues have begun healing, according to new research accepted for publication in the Endocrine Society’s Journal of Clinical Endocrinology & Metabolism (JCEM).

Celiac disease is an autoimmune condition that affects about 1 percent of the U.S. population. When people with the condition eat gluten—a protein found in grains like wheat—it triggers an immune response in the small intestine. Patients with this condition face a higher risk of breaking a bone, but studies have reached contradictory conclusions about whether the fracture risk remains elevated long after the disease is diagnosed and managed with a gluten-free diet.

“We believe that giving the mucous membrane—the moist tissue lining the small intestine—a chance to heal can lower the risk of complications, including bone fractures, in celiac patients,” said one of the study’s authors, Jonas F. Ludvigsson, PhD, MD, of Karolinska University Hospital and Karolinska Institute in Stockholm, Sweden. “Our research confirmed that patients had a higher rate of hip fractures when tissue damage persisted over time. Sticking to a gluten-free diet is crucial for minimizing tissue damage and reducing the risk of a serious fracture that could cause other complications.”

The cohort study analyzed tissue samples from 7,146 Swedes who were diagnosed with celiac disease from July 1969 to February 2008 and received follow-up biopsies within five years of diagnosis. Researchers examined intestinal tissue from the biopsies to determine the level of damage. Among this population, 43 percent had persistent villous atrophy where the intestinal tissue did not heal. (The villi are tiny structures that project from the lining of the small intestine.)

Researchers analyzed patient records to determine how many had broken bones. Patients were monitored for a median of 10.3 years after being diagnosed with celiac disease. The study found that people who had persistent tissue damage were more likely to break a hip. All patients faced a similar risk close to the time of the follow-up biopsy. The group with persistent tissue damage had a heightened risk of hip fracture beginning five years after the follow-up biopsy, indicating a higher long-term risk.

“Physicians have debated whether people with celiac disease actually benefit from a follow-up biopsy to determine the level of tissue healing taking place,” said one of the study’s authors, Benjamin Lebwohl, MD, MS, of the Celiac Disease Center at Columbia University Medical Center in New York. “These findings suggest that a follow-up biopsy can be useful for predicting complications down the road.”

Other authors of the study include: K. Michaëlsson of Uppsala University in Uppsala, Sweden, and P.H.R. Green of Columbia University Medical Center.

The study, “Persistent Mucosal Damage and Risk of Fracture in Celiac Disease,” appears in the February issue of JCEM.

###

Founded in 1916, the Endocrine Society is the world’s oldest, largest and most active organization devoted to research on hormones and the clinical practice of endocrinology.  Today, the Endocrine Society’s membership consists of over 17,000 scientists, physicians, educators, nurses and students in more than 100 countries. Society members represent all basic, applied and clinical interests in endocrinology. The Endocrine Society is based in Chevy Chase, Maryland. To learn more about the Society and the field of endocrinology, visit our site at www.endocrine.org. Follow us on Twitter at https://twitter.com/#!/EndoMedia.

Contact: Aaron Lohr
Director, Media Relations
alohr@endocrine.org

Contact:
 Jenni Glenn Gingery
Manager, Media Relations
jgingery@endocrine.org

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Friday, August 16, 2013
2013 Research at the Celiac Disease Center at Columbia University
Over the past year, the Celiac Disease Center at Columbia University has contributed to a number of peer-reviewed, medical publications. Here are the 2013 publications so far:

  • Use of shape-from-shading to estimate three-dimensional architecture in the small intestinal lumen of celiac and control patients Download publication
  • Implementation of a polling protocol for predicting celiac disease in videocapsule analysis Download publication
  • Prevalence of gluten-free diet adherence among individuals without celiac disease in the USA: results from the Continuous National Health and Nutrition Examination Survey 2009-2010 Download publication
  • Men with celiac disease are shorter than their peers in the general population Download publication
  • Is dietitian use associated with celiac disease outcomes? Download publication
  • Celiac disease in patients with type 1 diabetes: Screening and diagnostic practices Download publication
  • Villous atrophy and negative celiac serology: a diagnostic and therapeutic dilemma Download publication
  • Markers of celiac disease and gluten sensitivity in children with autism Download publication
  • Serologic markers of Lyme disease in children with autism Download publication
  • Increased IFNα activity and differential antibody response in patients with a history of Lyme disease and persistent cognitive deficits Download publication
  • Vitamin D status and concomitant autoimmunity in celiac disease Download publication
  • Detection of villous atrophy using endoscopic images for the diagnosis of celiac disease Download publication
  • Immunohistochemical and T-Cell receptor gene rearrangement analyses as predictors of morbidity and mortality in refractory celiac disease Download publication
  • Does celiac disease influence survival in lymphoproliferative malignancy Download publication
  • Letter – complications of coeliac disease despite a gluten-free diet Download publication
  • Risk of lymphoproliferative malignancy in celiac patients with a family history of lymphoproliferative malignancy Download publication
  • Prior endoscopy in patients with newly diagnosed celiac disease – A Missed Opportunity Download publication
  • Commentary – larazotide acetate – an exciting new development for coeliac patients Download publication
  • Probiotic therapy for celiac disease Download publication
  • Risk of thyroid cancer in a nationwide cohort of patients with biopsy-Verified Celiac Disease Download publication
  • Mucosal healing and mortality in coeliac disease Download publication
  • Season of birth in a nationwide cohort of coeliac disease patients Download publication
  • Larazotide acetate in patients with coeliac disease undergoing a gluten challenge – a randomised placebo controlled study Download publication
  • Prevalence of migraine in patients with celiac disease and inflammatory bowel disease Download publication
  • Should intussusception in children prompt screening for celiac disease Download publication

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Wednesday, May 15, 2013
Oral Therapy for Celiac Disease
This press release came across my newswire yesterday. I still have mixed feelings about taking medication to control my celiac disease but I am happy that there is now research going on in our community. 

NORTH CHICAGO, Ill. and SAN CARLOS, Calif., May 14, 2013 /PRNewswire/ -- AbbVie (NYSE: ABBV) and Alvine Pharmaceuticals, a leader in celiac disease therapeutics development, announced today that they have entered into a global collaboration to develop a novel oral treatment for patients with celiac disease, currently in Phase 2 development.  This collaboration builds on AbbVie's expertise and leadership in the field of gastroenterology with its on-market products to treat Crohn's disease, ulcerative colitis, and diseases associated with exocrine pancreatic insufficiency.
ALV003 is an investigational oral therapy composed of two recombinant, gluten specific enzymes (a cysteine protease (EP-B2) and a prolyl endopeptidase (PEP)), that degrade gluten in-vitro and in human clinical testing, and may reduce the symptoms and intestinal injury associated with celiac disease in patients attempting to adhere to a gluten-free diet.  Data from a Phase 2a study reported at Digestive Disease Week (DDW) 2012, showed reduction of intestinal inflammation in patients exposed to gluten and treated with ALV003 compared to patients treated with placebo.
"Celiac disease is an area with significant unmet medical need," said Scott Brun, M.D., vice president, pharmaceutical development, AbbVie.  "Patients who currently are unable to completely avoid gluten in their diets could potentially benefit from this promising investigational treatment. AbbVie has significant experience within immunology and gastroenterology and the exclusive option to acquire this asset complements AbbVie's broad mid-stage pipeline."
"A collaboration between Alvine and AbbVie combines our respective strengths and expertise in the development of what could become the first therapeutic option for this major unmet medical need," said Abhay Joshi, Ph.D., president and chief executive officer, Alvine.  "We are pleased to have an industry leader in gastroenterology as a collaborator, whose considerable global development reach can be focused on getting this novel therapy to more patients."
Under the terms of the agreement, AbbVie will make an initial upfront payment of $70 million for an exclusive option to either acquire the assets relating to ALV003, or the equity of the company. Alvine will maintain responsibility for Phase 2 clinical development, and upon successful completion of the approximately 500 patient Phase 2b study, AbbVie may exercise its option for the agreed upon additional consideration.  Alvine will also be entitled to receive a milestone payment upon AbbVie's initiation of Phase 3 development.  In collaboration with AbbVie Biotech Ventures, Inc., a subsidiary of AbbVie dedicated to making early investments in emerging biotech and pharmaceutical companies, AbbVie was an early investor in Alvine Pharmaceuticals.
XXX
About Alvine Pharmaceuticals 
Alvine Pharmaceuticals, Inc. is a private, clinical-stage, specialty biopharmaceutical company located in San Carlos, CA, focused on the development of biologics targeting autoimmune and inflammatory diseases, including celiac disease.  Alvine is focusing clinical development efforts on ALV003, an investigational drug in Phase 2 trials that could potentially be the first approved therapeutic treatment for patients with celiac disease.  For additional information about the company, please visit http://www.alvinepharma.com.
AbbVie Forward-Looking Statements
Some statements in this news release may be forward-looking statements for purposes of the Private Securities Litigation Reform Act of 1995.  The words "believe," "expect," "anticipate," "project" and similar expressions, among others, generally identify forward-looking statements.  AbbVie cautions that these forward-looking statements are subject to risks and uncertainties that may cause actual results to differ materially from those indicated in the forward-looking statements.  Such risks and uncertainties include, but are not limited to, challenges to intellectual property, competition from other products, difficulties inherent in the research and development process, adverse litigation or government action, and changes to laws and regulations applicable to our industry.  Additional information about the economic, competitive, governmental, technological and other factors that may affect AbbVie's operations is set forth in Item 1A, "Risk Factors," in our 2012 Annual Report on Form 10-K/A, which has been filed with the Securities and Exchange Commission.  AbbVie undertakes no obligation to release publicly any revisions to forward-looking statements as a result of subsequent events or developments, except as required by law.
About AbbVie
AbbVie is a global, research-based biopharmaceutical company formed in 2013 following separation from Abbott.  The company's mission is to use its expertise, dedicated people and unique approach to innovation to develop and market advanced therapies that address some of the world's most complex and serious diseases.  In 2013, AbbVie employs approximately 21,000 people worldwide and markets medicines in more than 170 countries.  For further information on the company and its people, portfolio and commitments, please visitwww.abbvie.com.  Follow @abbvie on Twitter or view careers on our Facebook or LinkedInpage.

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Thursday, February 7, 2013
Research: Mucosal healing and mortality in coeliac disease
Mucosal healing and mortality in coeliac disease.
Lebwohl B, Granath F, Ekbom A, Montgomery SM, Murray JA, Rubio-Tapia A, Green PH, Ludvigsson JF.

Aliment Pharmacol Ther. 2012 Nov 28. doi: 10.1111/apt.12164. [Epub ahead of print]

With our colleagues at the Karolinska Institute, this study demonstrates that failure to heal villous atrophy demonstrated in follow up biopsies is not associated with increased mortality risk.

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Thursday, January 31, 2013
Research: Incidence of lymphoproliferative disorders in patients with celiac disease
Incidence of lymphoproliferative disorders in patients with celiac disease.
Leslie LA, Lebwohl B, Neugut AI, Gregory Mears J, Bhagat G, Green PH.

Am J Hematol. 2012 Aug;87(8):754-9. doi: 10.1002/ajh.23237. Epub 2012 May 28.

We demonstrate that T and B Cell non-Hodgkin's lymphoma occurs in patients with celiac disease. 

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Thursday, January 24, 2013
Research: Season of birth in a nationwide cohort of coeliac disease patients
Season of birth in a nationwide cohort of coeliac disease patients.
Lebwohl B, Green PH, Murray JA, Ludvigsson JF.

Arch Dis Child. 2012 Nov 21. [Epub ahead of print]

In this publication, in collaboration with the Karolinska Institute we demonstrated that there is increased risk of celiac disease in those born in summer months.  This study is part of our ongoing research into epidemiological factors that predispose to celiac disease.

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Thursday, January 17, 2013
Research: Sex and racial disparities in duodenal biopsy to evaluate for celiac disease
Sex and racial disparities in duodenal biopsy to evaluate for celiac disease.
Lebwohl B, Tennyson CA, Holub JL, Lieberman DA, Neugut AI, Green PH.

Gastrointest Endosc. 2012 Oct;76(4):779-85. doi: 10.1016/j.gie.2012.05.011. Epub 2012 Jun 23.

In this paper we demonstrate that physicians biopsy men and racial minorities less often than they biopsy females at the time of endoscopy.  This contributes to the underdiagnosis of celiac disease.

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Thursday, January 10, 2013
Research: Prevalence of Migraine in Patients With Celiac Disease and Inflammatory Bowel Disease
Prevalence of Migraine in Patients With Celiac Disease and Inflammatory Bowel Disease.
Dimitrova AK, Ungaro RC, Lebwohl B, Lewis SK, Tennyson CA, Green MW, Babyatsky MW, Green PH.

Headache. 2012 Nov 5. doi: 10.1111/j.1526-4610.2012.02260.x. [Epub ahead of print]

We described increased occurrence and severity of headache and migraine in patients with celiac disease and inflammatory bowel disease compared to controls.

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Thursday, January 3, 2013
Research: Copper levels in patients with celiac neuropathy
Copper levels in patients with celiac neuropathy.
Patterson SK, Green PH, Tennyson CA, Lewis SK, Brannagan TH 3rd.

J Clin Neuromuscul Dis. 2012 Sep;14(1):11-6.

Neuropathic symptoms are common in celiac disease and the cause is often unclear.  We found that copper deficiency does not appear to be a major cause of neuropathy in celiac disease.

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Wednesday, June 27, 2012
Celiac Disease Center Research Study in NYC
Adults with celiac disease needed for a research study! 

The Celiac Disease Center at Columbia University is testing a new automated phone survey to measure symptoms of celiac disease that can be used to test new treatments for celiac disease. They are looking for people with biopsy-proven celiac disease to test the new survey while eating a food with or without a small amount of gluten.

Participants will take the survey every day for 8 weeks and will come to the Celiac Disease Center at Columbia University in New York City five times during the study. You will be compensated for your time. 


This study is being sponsored by Alvine Pharmaceuticals. 


If you are interested in learning more, please contact: 
Maria Teresa Minaya (Study Coordinator) 
Celiac Disease Center at Columbia University 
180 Fort Washington Ave Suite 936 
New York, NY, 10032 
Email: celiaccentercolumbiaresearch@columbia.edu

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Wednesday, March 7, 2012
Family members of persons with Celiac wanted for research study
The National Foundation for Celiac Awareness (NFCA), in collaboration with Beth Israel Deaconess Medical Center in Boston, is conducting research on the perceptions of celiac disease among families where a member has been medically diagnosed. This research seeks to uncover the attitudes and beliefs of at-risk family members who have not been tested for the disease.

The study will have two phases: telephone focus groups and personal interviews, and an on-line survey. The telephone focus groups and personal interviews at phase one will impact and define the content of the on-line survey. This notice is for participation in phase 1, the telephone focus groups and personal interviews, which is now open.

All telephone focus group participants will receive a gift pack of coupons and/or healthy mainstream nutritional products with a gluten-free label valued at $15.

Results from the focus groups and personal interviews will guide the development of an online survey. The online survey will not open up until early March 2012, after the first phase of this study is completed.

If you wish to participate only in phase two, the online survey, please see instructions below entitled “Taking Part in Stage Two: the Survey.”

To be eligible, participants must:

  • Be 21 years or older
  • Speak fluent English
  • Have a biological relative (parent, sibling, child, aunt, uncle, niece, nephew, grandparent, grandchild or half-sibling) who has been diagnosed with celiac disease.
  • NOT have been tested for celiac disease.


Are you eligible for the telephone focus groups or personal interviews?
If not, do you know of someone who is?

To express interest in participation or to refer someone potentially eligible, please email the researcher at claudia_dolphin@emerson.edu. Make sure to include an email address where you or your referral can be reached. Indicate your preference for either a focus group or personal interview (which can be done over the phone). You or your referral may be sent a short 6-item questionnaire to confirm eligibility. If you do not hear from us, you can assume that phase one has been closed.

Taking Part in Stage Two: The Survey
If you are only interested in completing the survey, or know someone who might be interested in taking the survey, please email the researcher claudia_dolphin@emerson.edu. Make sure to include an email address where you or your referral can be reached. Also, include “Survey” in the subject line. Study investigators estimate that the survey will be available in early March 2012. The survey will be available for 2 weeks.

http://www.celiaccentral.org/research-news/research-notice-family-members-of-persons-with-celiac-disease-wanted-for-a-reseach-study/

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Tuesday, December 7, 2010
Celiac Disease Center Online Survey
DO YOU HAVE CELIAC DISEASE OR GLUTEN SENSITIVITY?

The Celiac Disease Center at Columbia University is conducting a study on the health and nutrition practices of people with celiac disease and gluten sensitivity. To join the study, we ask that you take a few minutes to fill out a survey. Participation is voluntary and anonymous.

The study is for those 18 years or older only.

The survey can be found via the following link: http://www.surveymonkey.com/s/K2VZ7ZC

Please do not enter any information that may identify you (such as your name, date of birth, address, or social security number). There is no compensation for participating in this study. If you have any questions about the study, please contact Dr. Tennyson or Dr. Green at 212-305-5590. If you have any questions about your rights as a research subject, please contact the IRB office at 212-305-5883.

The Celiac Disease Center at Columbia University Medical Center was established within the Department of Medicine at Columbia University in 2001. The Center's mission is to redefine the future of celiac disease and treatment through continuing advances in patient care, research, education and patient advocacy.

The Celiac Disease Center at Columbia University Medical Center is one of a few centers in the United States that provides comprehensive medical care, including nutritional counseling, for adult and pediatric patients with celiac disease. All of the Center's research is directed toward celiac disease clinical, epidemiology, and mechanisms of pathogenesis of celiac disease and patient and physician education

Christina A. Tennyson, M.D.
The Celiac Disease Center at Columbia University
180 Fort Washington Avenue, Suite 936
New York, New York 10032
Phone: (212) 342-4508

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Tuesday, November 2, 2010
Research Study for Children With Celiac Disease
I got this call for research participants from Nicole Jordan, MD at New York-Presbyterian, The University Hospital of Columbia and Cornell. Please contact Dr. Jordan directly if you have any questions.

Dear participant:

We would like to invite you to participate in a Celiac Disease research study that will include completing two questionnaires. The purpose of this is to understand what it feels like to live with celiac disease. The overall goal is to use your responses to test a questionnaire designed specifically for children with Celiac Disease. We would greatly appreciate your participation.

You do not have to participate in order to receive care. There is no harm to
completing the questionnaires. The benefit of participating is that you will assist in the testing of a questionnaire which may improve the quality of life of children with Celiac Disease. You do not have to complete the questionnaires because participation is completely voluntary. Your name will not be included in the questionnaires.

Please contact Dr. Nicole Jordan at celiacdiseaseQOL@yahoo.com or at
617-251-4803 if you wish to participate or should you have any further questions. If you have questions about your rights as a research subject, please contact the Institutional Review Board at 212-305-5883.

Respectfully,
Peter Green, M.D.
Professor of Clinical Medicine
College of Physicians & Surgeons
Harkness Pavilion, Suite 936
180 Fort Washignton Avenue
New York NY 10032

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Saturday, October 2, 2010
Dermatitis Herpetiformis Research Study
Have you been diagnosed with Dermatitis Herpetiformis or know someone who has?

Division of Dermatology, Vanderbilt Health at Vanderbilt University is seeking volunteers for a research study.

If you have a diagnosis of dermatitis herpetiformis, you may be eligible to be in a research study looking at the treatment of this skin condition with a topical medication.

· The study includes six weeks of daily home treatment.
· A total of 4 study visits are required.
· Study related evaluations and medication are provided at no cost.

For more information, please contact

Mary Beth Cole, MD
615-322-6485
marybeth.cole@vanderbilt.edu
Vanderbilt University
Nashville, TN

IRB 8/9/10

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Tuesday, April 13, 2010
Research Study on Gluten-Free Claims on Food Labels
Seeking Participants for a Research Study on Gluten-Free Claims on Food Labels

The U.S. Food and Drug Administration (FDA) is seeking adults diagnosed with celiac disease or gluten-intolerance or caregivers to such individuals to participate in a research study on their grocery shopping habits. Participants will be asked to take an Internet survey, which will take approximately 10 minutes to complete.

The survey is available at www.synovate.net/forgluten

Please contact Katherine Kosa at kkosa@rti.org or 1-800-334-8571, extension 23901, if you have any questions about the study.

To request a paper copy of the survey, please call 1-877-4GLUTN1.

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