So, this spring…set a goal! And, think positive! Tell five friends about celiac disease. Who knows, they might have it, too. Also, try meeting other people with celiac. It is comforting to know others have a similar story. By helping others, you will help yourself! You never know who you will bump into in the elevator, at the supermarket, standing in line at the movie theater. They can be an influencer and help create the seeds of change. How do you think great corporations like PF Chang’s and Anheuser-Busch decided to enter the gluten-free market? They were inspired by a celiac sufferer just like “YOU”!!! We have a vision for the future, and the future is now!!!! But we need your help. There is work to do and we need people like you to do it!
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 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!