Lawmakers Urge Celiac Cure Research After Health Hearings

Congress wants federal health officials to look closer at funding celiac cure research after receiving 750 stories from those affected by the autoimmune disorder and hearing from Celiac Disease Foundation CEO Marilyn Geller.

Delivered in April, the congressional testimony urged lawmakers to develop a first-ever National Institutes of Health comprehensive plan to treat and cure celiac disease. On May 7, the Celiac Disease Foundation announced that lawmakers have since included language calling on the National Institutes of Health to fund new celiac cure research.

Click here to learn more about Geller and the Celiac Disease Foundation. 

Geller spoke before the House Committee on Appropriations Subcommittee on Labor, Health and Human Service, which is the subcommittee responsible for the National Institutes of Health (NIH), Centers for Disease Control and Prevention and Medicaid/Medicare budgets.

Following Geller’s testimony and the submissions of the more than 750 stories, the house subcommittee included a passage written by the Celiac Disease Foundation in an upcoming health bill.

In her testimony, which can be read in full here, Geller touched on the lifetime burden of the gluten-free diet for patients, time missed from work and school and stressed that celiac disease is a serious medical condition – not a fad.

The language calls on the National Institute of Allergy and Infectious Diseases to support new research finding a cure.

“This is a clear directive to NIH leadership, however, that this Subcommittee wants to the NIH to confront celiac disease with the urgency and research funding it deserves,” said Geller. “This is great news for patients, caregivers, and researchers. This is great news for all of us.”  

Geller, a member of Gluten-Free Living‘s advisory board, has been working with the Celiac Disease Foundation for years to advocate for celiac disease on Capitol Hill. The Celiac Disease Foundation is fully committed to bringing the voice of the celiac disease community to Washington, D.C.,” said Geller. “We know that effective advocacy is critical to our efforts to accelerate the search for treatments and a cure.”

The bill containing the language; however, is still working its way through Congress. Eventually, it will end up at the White House for approval.

Infant Study on Development of Celiac Enrolling

Help Identify, Predict and Prevent Celiac

The MassGeneral Hospital for Children Center for Celiac Research and the Celiac Program at Harvard Medical School have launched a research study to understand the many factors that contribute to the development of celiac.

The CDGEMM (Celiac Disease Genomic Environmental Microbiome and Metabolomic) Study is aimed at understanding the role that our genes, gut microbiome and environmental factors play in the development of celiac.

Researchers, led by Dr. Alessio Fasano, are hoping the study will help create a model to identify a pattern of gut bacteria (microbial signatures) and environmental factors that could help predict who will develop celiac before it happens. Once able to predict celiac development, their goal is to prevent it by producing treatments based off of this work.

Could your infant take part?

Researchers have enrolled 150 babies so far and are looking for a total of 750 infants from the U.S., Italy and Spain to participate. Infants up to 6 months of age who have a first-degree relative (parent or sibling) with celiac are eligible for the study. If you are currently pregnant and your soon-to-be infant will fit these criteria, you can even begin the enrollment process before birth. They study is recruiting from all over the U.S., as well as at centers in Italy and Spain, and follows children from the time of enrollment until they turn 5 years old.

Here is what study participants can expect:

  • Collection of blood and stool samples from your child throughout the study. Each time blood is drawn it will be tested for the antibodies used to diagnose celiac. Thus, by taking part in the study, each child will be monitored closely for celiac, which allows for early detection and treatment if necessary. In addition, genetic testing will assess whether each child has the genes compatible with celiac.
  • Parents will keep a diary of their infant’s antibiotic use and dietary history for the first year of life.
  • Parents will answer questions about their infant’s medical and social history approximately every six months.
  • Forms can be completed securely online.
  • Study visits can be conducted at the center where participants enroll or at the child’s pediatrician’s office.
  • Everything is free of charge.

Finally, participants have an active firsthand role in groundbreaking science and around-the-clock access to the CDGEMM study team, comprised of experts in the field of celiac. Participants are also welcomed into a community of like-minded families who want to help advance our knowledge of celiac.

Parents who are interested in enrolling their infant can visit the study’s website at www.cdgemm.org to see how their little ‘GEMM’ can help make celiac history. To enroll or inquire about enrollment, contact a participating center nearest you.

Want more information on celiac and kids? Check out our Kids section.

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Research Roundup: Celiac Disease Triggers

 

Celiac disease triggers: Mild virus

Celiac disease can be triggered by a common virus so mild people might not even notice they have it. The immune system soon eliminates this reovirus but it leaves its mark. One event like this may not be enough, but in predisposed people the accumulation of several similar insults may provide an autoimmune response such as celiac disease.

U.S. researchers made this discovery by studying the effects of two strains of the virus with slight genetic differences. One was capable of provoking celiac in susceptible mice and the other was not. A comparison of how mice responded to both strains identified how their immune systems behaved differently as they lost tolerance to gluten. In particular, the mice with celiac produced higher levels of a protein called interferon regulatory factor 1 (IRF1).

Then researchers looked for evidence of the same activity in humans. They identified people with high levels of reovirus antibodies from previous infection. Celiac disease was unexpectedly common in this group. Further, celiac patients who had high levels of reovirus antibodies also produced more IRF1. This implicated the virus as a contributing factor in onset of their disease.

Future research might reveal a viral vaccine that can protect people at risk for celiac.

Bouziat R, Hinterleitner R, Brown JJ, Stencel-Baerenwald JE, Ikizler M, Mayassi T, Meisel M, Kim SM, Discepolo V, Pruijssers AJ, Ernest JD, Iskarpatyoti JA, Costes LMM, Lawrence I, Palanski BA, Varma M, Zurenski MA, Khomandiak S, McAllister N, Aravamudhan P, Boehme KW, Hu F, Samsom JN, Reinecker H-C, Kupfer SS, Guandalini S, Semrad CE, Abadie V, Khosla C, Barreiro LB, Xavier RJ, Ng A, Dermody TS and Jabri B, “Reovirus infection triggers inflammatory responses to dietary antigens and development of celiac disease,” Science, 7 April 2017;356:44-50, doi:10.1126/science.aah5298.

Celiac disease triggers: C-section findings

Babies born by cesarean section do not have an increased risk for celiac, according to a new study from Italy.

Cesarean births do not provide babies with the same microbes as those who pass through the birth canal. Their gut microbiome matures more slowly and includes fewer of certain bacteria that assist digestion. Disturbances in the microbiome are implicated in celiac disease. For this reason, some experts believe vaginal delivery might protect babies at risk.

This study focused on 431 children born between 2003 and 2009 who had a high risk for celiac based on genetic tests. Nearly half (198) had a cesarean birth. In the study group, 71 children were diagnosed with celiac by age 10. The disease was just as likely regardless of how they were born.

This was the first study on this topic to follow a group of at-risk children from birth, providing stronger data than previous research. It did not distinguish between elective and emergency cesarean delivery.

Lionetti E, Castellaneta S, Francavilla R, Pulvirenti A and Catassi C, “Mode of delivery and risk of celiac disease: risk of celiac disease and age at gluten introduction cohort study,” Journal of Pediatrics, 10 Feb 2017;184:81-86.e2, doi:10.1016/j.jpeds.2017.01.023 [Epub ahead of print].

Thyroid Disease in Celiac Patients

People with celiac disease have a higher risk for thyroid disease. A new study from China Medical University, Shenyang, strengthened the evidence using a meta-analysis of all relevant research conducted prior to May 2016.

The research team surveyed medical literature for studies that addressed both celiac and thyroid disease. They set standards to exclude data having weak statistical value. Thirteen studies were included, involving 15,629 people with celiac disease and 79,342 people without celiac disease for comparison.

Those with celiac disease were three times more likely to also have thyroid disease. The reason for this association is not yet clearly understood. Shared genetic traits might contribute to both conditions.

The article recommends that people with celiac disease should be screened for thyroid disease. However, the authors urge caution in interpreting their results, as all studies so far have been subject to statistical bias.

The scientific literature lacks robust data on how a gluten-free diet affects thyroid disease in people with celiac disease. However, this analysis suggested thyroid disease was equally common in untreated patients and those following a gluten-free diet.

Sun X, Lu L, Yang R, Li Y, Shan L and Wang Y, “Increased incidence of thyroid disease in patients with celiac disease: a systematic review and meta-analysis,” PLoS ONE, Dec 28 2016, 11(12):e0168708, doi:10.1371/journal.pone.0168708.

 

symptoms of thyroid problems

Although several thyroid symptoms could be misinterpreted for another condition or triggered solely by celiac disease, it’s best to know potential signs of trouble:

  • Weakness
  • Fatigue or difficulty sleeping
  • Weight gain
  • Weight loss
  • Sensitivity to cold and/or heat
  • Hair loss
  • Dry skin
  • Muscle cramps
  • Irritability
  • Depression
  • Constipation or diarrhea
  • Jaundice
  • Slowed speech
  • Abnormal menstrual cycle
  • Infertility
  • Increase in tongue size
  • Mental fog
  • Difficulty focusing
  • Bloating
  • High cholesterol
  • Racing heartbeat
  • High blood pressure
  • Bulging eyes

If you notice several of these symptoms, it’s worth visiting your physician for a blood test. If you are convinced that your symptoms are not being caused by celiac disease, you must be your own advocate when it comes to asking for blood tests and having your thyroid tested. Some helpful blood tests include TSH, free T3, reverse T3, free T4, thyroid antibodies, vitamin levels, cortisol level and iron level.

—Heather Burdo

New Infant Study on Celiac Disease Now Enrolling!

CDGEMM Logo

Help Identify, Predict and Prevent Celiac Disease

The MassGeneral Hospital for Children Center for Celiac Research and the Celiac Program at Harvard Medical School have launched a research study to understand the many factors that contribute to the development of celiac disease.

The CDGEMM (Celiac Disease Genomic Environmental Microbiome and Metabolomic) Study  is aimed at understanding the role that our genes, gut microbiome and environmental factors play in the development of celiac disease.

Researchers, led by Dr. Alessio Fasano, are hoping the study will help create a model to identify a pattern of gut bacteria (microbial signatures) and environmental factors that could help predict who will develop celiac disease before it happens. Once able to predict celiac disease development, their goal is to prevent it by producing treatments based off of this work.

Could your infant take part?

Researchers have enrolled 127 babies and are looking for a total of 500 infants to participate. Infants up to 6 months of age who have a first-degree relative (parent or sibling) with celiac disease are eligible for the study. If you are currently pregnant and your soon-to-be infant will fit these criteria, you can even begin the enrollment process before birth. They study is recruiting from all over the U.S., as well as at centers in Italy, and follows children from the time of enrollment until they turn 5 years old.

Here is what study participants can expect:

  • Collection of blood and stool samples from your child throughout the study. Each time blood is drawn it will be tested for the antibodies used to diagnose celiac disease. Thus, by taking part in the study, each child will be monitored closely for celiac disease, which allows for early detection and treatment if necessary. In addition, genetic testing will assess whether each child has the genes compatible with celiac disease.
  • Parents will keep a diary of their infant’s antibiotic use and dietary history for the first year of life.
  • Parents will answer questions about their infant’s medical and social history approximately every six months.
  • Forms can be completed securely online.
  • Study visits can be conducted at the center where participants enroll or at the child’s pediatrician’s office.
  • Everything is free of charge.

Finally, participants have an active firsthand role in groundbreaking science and around-the-clock access to the CDGEMM study team, comprised of experts in the field of celiac disease. Participants are also welcomed into a community of like-minded families who want to help advance our knowledge of celiac disease.

Parents who are interested in enrolling their infant can email [email protected] for more information or visit the study’s website at www.cdgemm.org to see how their little ‘GEMM’ can help make celiac disease history!

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Celiac Disease Research – What it means to you

Keeping up with news about research into celiac disease, gluten-intolerance, the gluten-free diet and related topics can keep you very busy.And sometimes when you read about new studies it can still be difficult to figure out exactly what they will mean in your gluten-free life. Is a promising treatment likely to move from the lab to real life in five years or ten? Can a new way of diagnosing celiac disease or gluten intolerance get you a definitive answer after years of uncertainty? What about studies into safe levels of gluten in your food? Are there links between celiac disease and other medical conditions?In upcoming issues of Gluten-Free Living we’ll give you important information about research and how to interpret it. More about that in a minute.

First we wanted to let you know about a new study from the University of Chicago, where researchers have been able to create and then cure celiac disease in mice by manipulating an inflammatory protein commonly found in the gut of humans who have the disease.

In a study published in the journal Nature, mice who were genetically  susceptible to celiac disease were given an increased amount of interleukin 15 causing them to develop symptoms of the disease. But when the IL-15 was blocked, the mice reverted to normal and could tolerate gluten again.

Interestingly, when the mice were given retinoic acid, a derivative of
Vitamin A thought to reduce inflammation in the intestine, they got worse instead of better.

So what does all this mean to those who have celiac disease?

The hope is that results will eventually help treat and possibly prevent development of celiac disease in those who are most at risk. The study identifies IL-15 as one, perhaps critical, way people lose tolerance to gluten and could lead to ways to block it, said Bana Jabri, MD, PhD, one of the study’s authors and an associate professor who works with the University of Chicago’s Celiac Disease Center.

In fact, clinical trials of medications that block IL-15 are already under way for patients with rheumatoid arthritis, another inflammatory disorder. Early results have been encouraging.

The study also raises questions about the use of retinoic acid, which is found in acne treatments such as Retin-A and Accutane, by those who have celiac disease. The retinoids seem to act with the IL-15 to promote inflammation in the intestine.

This study is just one of many related to celiac disease currently underway. To help readers of Gluten-Free Living understand what some of these studies mean, we are launching a new research column in our upcoming issue. The column is written by Jason Clevenger, PhD, a scientist with the consulting firm Exponent, Inc. He is the former editor of the Healthy Villi Newsletter published by the Boston celiac disease support group. Jason became interested in celiac disease when he met his wife Charmaine, who had been diagnosed while she was in college. His column will include a summary of each study in language you can understand even if you don’t have a medical degree. And it will tell you why it’s important to you.

Nearly seven years ago, when the National Institutes of Health held the first consensus conference on celiac disease and helped usher it into a new era of understanding, the point was made that not enough scientists were interested in studying the disease.  That, like many other things related to the gluten-free lifestyle, has changed.

We’ve designed our new research column to help you make sense out of the growing scientific interest in celiac disease, gluten intolerance and the gluten-free diet. Look for it in our new issue, due out in early March.