Screening for Celiac Disease
Thanks for sharing your ideas about whether children should be routinely screened for celiac disease. The ideas and experiences are so varied that I decided to publish everything without comment and let your reach your own conclusions:
“I’m not sure screening for Celiac would be very effective. I’ve had the Celiac panel blood test twice—- both times with a negative result, but with a positive biopsy result and "visible to the naked eye" damage to the small bowel. I don’t think it’s very effective.”
“It is an issue that I struggled with for a very long time. I am a nurse at the Cleveland Clinic heart center. I used to work in the children’s hospital and that was one of the questions that I would raise to the doctors and to doctors that I spoke with online. They said that it was cost prohibitive. They said that if only 1% of the population is going to have the disease that it does not make since to test every child.. I disagree with this statement… If you ever read research from Italy, they have different parts of the country that test every child by 5 years of age, which is the reason that they have better control over the disease and subsequent diseases caused by celiac disease. The other part that makes it complicated to test children when they are young has to do with time when the disease presents itself. A lot of researchers say that children shouldn’t be tested under 4 years of age unless there are symptoms because not all children have the antibodies unless there are symptoms. So from the medical side of it, I think that doctors fear that if the child is tested too young and is negative that both the doctors and parents won’t look for the disease down the road once symptoms occur because they already tested negative to it. Maybe a solution would be to genetically test all children by age 4, then once they have symptoms they can run the blood work. I don’t know if that would make the best options, but if the genetic test is run, then we would at least know if the child is going to be a carrier of the diseases. I have been diagnosed for 5 years and have been a strong advocate for celiac disease. I help manage a support group in
“My daughter was diagnosed six months ago at age 9 with celiac disease. She also has Type 1 diabetes and her endocrinologist routinely screens his Type 1 patients for CD. Her blood screen was positive and the diagnosis was confirmed with an endoscope. Since then, she has had no trouble adapting to a gluten free diet. It is important to note that she is completely asymptomatic for celiac disease. She could eat a loaf of bread right now and feel just fine despite the damage that would be occurring internally. For this reason, my other two children are scheduled for celiac blood screening even though they do not have diabetes. I’m sure there must be other people who are asymptomatic and have no idea that they have celiac disease.”
“I am surprised that screening blood tests are not routinely done given the huge amount of ‘tummy aches" that young children endure. I don’t know what the average time is for a celiac diagnosis to be completed, but simple blood tests could at least provide parents and physicians with a direction early on.”
“I am mother to a relatively recently (8 months) diagnosed celiac daughter. I am also a neonatal nurse. We screen all infants for a number of ailments at birth. It is state law in TN. It may be national, I’m not sure about that. Of course with celiac disease, the child would have to first be exposed to gluten and have an immune response in order to get a positive test. Do we know for sure that all celiac’s have an early immune response since so many are not diagnosed until decades later? If they do not, we would still miss many many cases. My daughter had no indication that she had any digestive problems of any kind for more than the first two decades of her life. The other two reasons I can think of for not doing it is, one it takes a lot of blood. It’s not the case of a simple finger stick and the other is the expense. My daughter’s two lab tests cost over $600.00.”
Well, there we are. If there are other ideas that should be shared, please send them. I’ll be asking more questions. The dialog that follows helps all of us. I think I’ll ask the questions in my newsletter, and then — to get maximum coverage — publish the answers on the blog. I’ll publish your answers as long as you are willing to provide them. E-mail me at gfceliac@gmail.com or leave a comment at the end of this or any article.
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