Baby Bites: Registry Seeks to Link Celiac Disease to Birth Defects
Diarrhea, bloating and gas are the first things that come to mind when I hear the words celiac disease. Icky right?!?! But have you ever stopped to think about the non-gastrointestinal complications? I’m talking about things that you might not associate with celiac disease…complications that might not even be linked yet.
According to the University of Chicago Celiac Disease Center, there are more than 300 symptoms related to celiac disease. To better understand how celiac disease affects the body and how it may relate to birth defects, the National Foundation for Celiac Awareness and Birth Defect Research for Children are asking that parents who are diagnosed with celiac disease to register their children in the National Birth Defect Registry if their children have been diagnosed with a structural or functional defect. The registry will help determine if celiac disease plays a role in children developing birth defects.
What does this mean and how do you know if you should register your child?
First of all, you must understand what a birth defect is. According to the Centers for Disease Control and Prevention (CDC), a birth defect is an abnormality of structure, function, or metabolism (body chemistry) present at birth that results in physical or mental disability, or is fatal. Most birth defects occur during the first three months of pregnancy, but brain development continues throughout pregnancy so there may be effects past the first trimester. There are thousands of different birth defects that range in severity from very mild to extremely severe and life threatening. Approximately 250,000 babies are born each year with a major structural birth defect.
There are two categories of birth defects. Structural birth defects are related to body parts and generally result in physical disabilities. Common structural defects include cleft lip or cleft palate, heart defects, abnormal limbs, and neural tube defects that are related to development of the brain and spinal cord.
Functional birth defects relate to how the body works and may result in immune and nervous system disabilities. Examples of functional defects include problems such as attention disorders, autism, Asperger’s Syndrome, Pervasive Developmental Delay, learning disabilities and other intellectual disabilities.
Birth defects are recorded on the newborn hospital records of 3% or more of babies born in the United States. But, from one-third to one-half of all birth defects are not detected in the neonatal period. If babies are followed for 5-7 years after birth, up to 16% may have a minor or major birth defect. Approximately 20% of all birth defects are genetic (having one or more gene that does not work correctly; having an extra chromosome or missing part of one). Other birth defects are caused by maternal illnesses like diabetes or exposure to certain viruses like rubella or CMV. In addition, an increased risk birth defects has also been linked to deficiencies in certain nutrients like folic acid. Other experts believe that 25% or more of birth defects of unknown causes will be linked to an adverse environmental exposure during pregnancy or in the prenatal period.
Can celiac disease cause birth defects? The answer is: we don’t know! That’s why we would like to join with Birth Defect Research for Children in collecting data through the National Birth Defect Registry. We want to collect information about current patients to determine if there is a there is a link that can be proved scientifically.
The National Birth Defect Registry is a research project designed through a collaboration of seven prominent scientists. The registry collects information on all categories of structural and functional birth defects as well as the health, genetic and environmental exposure histories of the mothers and fathers of these children. Registry data have identified patterns of birth defects in the children of Vietnam and Gulf War Veterans. The registry has also helped detect clusters of birth defects in communities with toxic environmental exposures and in the children of mothers exposed to similar medications during pregnancy. Registry data have been presented to numerous government agencies and in many national and international media forums.
How can you help?
If you have celiac disease and are the parent of a child who was born with a structural or functional defect, enter your case in the registry.
Step 1: Register your case at http://www.birthdefects.org/registry/main.asp. You will be asked to fill out basic demographic information about your family’s medical history.
Step 2: Currently, there is no option within the registry to select celiac disease. But don’t worry! When you respond to the section about maternal and paternal illness, just fill in the blank that you are DIAGNOSED WITH CELIAC DISEASE or UNDIAGNOSED CELIAC DISEASE, depending on the time of the diagnosis in relation to childbirth. The evidence must be medically documented cases of both celiac disease and the structural or functional birth defect.
If you are a parent of a child with birth defects, please take a few minutes to contribute to the registry. Your participation will ensure that future research includes celiac disease and helps all of us with celiac better understand our disease and how it affects our future children.
Once data is collected, NFCA will publish the findings!
Resources:
https://www.birthdefects.org/
http://www.nichd.nih.gov/health/topics/birth_defects.cfm
http://www.cdc.gov/
Symptoms Checklist.
Do you think you may have celiac disease? Are you trying to get a
family member or friend tested? If so, the NFCA symptoms checklist is
the perfect place to start. Simply click on the various symptoms and
receive a printer-friendly form to take to a doctor. The form provides
you with the latest information on celiac testing, including the blood
test and small intestine biopsy. Give this form to your doctor to be
sure he orders the correct tests! Not only is the symptoms checklist a
tool for you or your loved ones to get diagnosed, but also the
responses collected are helping the NFCA correlate symptoms to
diagnosis. This data will help all of us better understand the disease
and how it affects our bodies. 
Celiac Survival Guide.
Are you already diagnosed with celiac disease and look for help with
managing your daily gluten-free diet? The NFCA Celiac Disease Survival
Guide is a comprehensive guide for living a happy and healthy
gluten-free lifestyle. The guide provides suggestions for food choices
during the early healing process and also explores the fast-expanding
marketplace. There is even information about pizza and beer, birthday
party planning and the best tasting products on the market! Medical
tips are also provided, as well as a step-by-step guide for ensuring
ongoing health. 
School Lunches.
Are you the parent of a child with celiac? If so, this resource is for
you! With the help of the United States Department of Agriculture, the
NFCA developed guidelines to help children and parents navigate their
school's meal program. The guidelines explain federal laws and provide
step-by-step instructions for getting a child special gluten-free meals
at school. 
Gluten-Free Cooking Sprees.
Mark your calendars and sharpen your knives! If you love food, be sure
to check the NFCA website for a Gluten-Free Cooking Spree near you!
Watch top doctors, chefs and dietitians compete to cook the best
gluten-free food! And, the best part is that you get to eat it too!
Cities for 2008 include San Francisco, St. Louis, Washington, DC,
Buffalo, Boston and West Palm Beach. 
Right
now Alba Therapeutics is recruiting participants for a Phase II
clinical trial of AT-1001. The study is examining three doses of the
drug for efficacy and safety for treating celiac disease. The goal of
the study is to show that AT-1001 can prevent intestinal damage when a
patient undergoes a six-week gluten-challenge. 
digestion process. When a healthy person eats food, it travels to the
small intestines where it is absorbed into cells and broken down. Once
the food particles are processed in the small intestine cells, the
cells release the nutrients into the blood stream where they are
absorbed and used by the body to function. However, between the cells
we have what are known as “tight junctions” These are actually dynamic
gates that open and close. When a person with celiac disease eats
gluten, the food travels into the small intestines, but accidentally
slips past the cells through the gates. We commonly call this “leaky
gut” syndrome because the gut is leaking out the gluten protein before
it has a chance to be processed and digested. This is toxic for a
person with celiac disease. 
Medical Affairs Dr. Betsy Van Parijs. She very eloquently explained the
theory of how this investigational drug works and helped convince me
that data so far have shown that the drug is well-tolerated in celiac
patients. 
To
highlight the importance of education on the issue, on December 3,
2007, CNN Newsroom Anchor and NFCA Spokeswoman Heidi Collins addressed
an audience of 12,000 in-hospital pharmacists at the American Society
of Health System Pharmacists Mid-Year Clinical Meeting. Heidi spoke
about spending Christmas Eve 2006 in a hospital emergency room. Her
five-year-old son, who has celiac disease, had a horrible infection and
desperately needed a course of antibiotics. At 11:00pm on Christmas
Eve, no one at the pharmaceutical companies was available to tell the
doctors if there was gluten in the pills. 
