Have a celiac sibling or close relative with the disease? Since it’s celiac awareness month I thought I would answer a few statistical questions on your chances of having celiac too. If you have a celiac sibling you probably know a little bit about this autoimmune disorder that affects the small intestine and causes a number of symptoms.
With celiac disease your immune system attacks your body’s tissues and organs. No medicine will cure it.
The only thing you can do is eat a strict gluten-free diet for life.
If you don’t go gluten free inflammation from over-activity of your immune system can cause over 300 different symptoms all over your body.
I have a close friend who’s planning to do a celiac screening this week. I’ve encouraged her to rule it out, since she’s got a nephew who was diagnosed a couple years ago and a few nagging symptoms that have been lingering on. Are you like my friend, symptomatic and with a close relative who’s diagnosed with celiac? It’s a good idea to get a blood test done to either confirm or rule out celiac disease.
But what if you’ve got no symptoms of celiac and a celiac sibling?
The University of Chicago Celiac Disease Center does free celiac screenings annually every fall. They discovered over 60% of children and 40% of adults testing positive for celiac don’t notice symptoms.
If you have a brother with celiac or a sister with celiac just get tested. Your chances of having celiac too are greater.
The popular statistic for those with celiac in the U.S. is about 1 in 133 people. That’s less than 1% of the population in the U.S., or about 3 million people. Of course a little girl in Alaska named Grace blew that statistic out of the water this year when she did a screening of 133 random people. She discovered 4 of her participants had undiagnosed celiac. None of them had any known history of celiac in the family. One of them happened to be her best friend, classmate, and neighbor.
Celiac disease is hereditary, but triggered by the environment. This means that each immediate family member of the ones who tested positive in her screening have an increased risk. The genes for celiac need to be present in at least one parent for a child to get celiac disease.
According to the National Institutes of Health University of Chicago Celiac Disease Center close family members have a greater risk.
They claim that if you have celiac there is a 4 to 12% chance that your parents, children, and siblings will also have it. In 1997 Luigi Greco D.C.H., M.Sc.(MCH), M.D., Department of Pediatrics, University of Naples did a similar study. His results showed a 10% chance.
Whether it’s 10% or 12% is not important. The point is, your chances of having celiac too are far greater.
Little Grace Rennard is very curious about these odds, too. Her mother tells Healthy Family that next year’s science fair project is going to challenge current celiac sibling and first degree relative statistics.
Grace says, “If a relative to you is diagnosed with Celiac Disease you should go in and get tested because you might have the genes. If you get tested and it’s negative, that means you don’t have it now, but you should know that it can trigger at any point of someone’s life. 4 of the 6 positivies / equivocal in my study did not have any of the classic symptoms.”
In the general population scientific studies put your chances at 1 in 133 of having celiac. In a family with a celiac sibling your chances are up to 16 in 133. Of course the average family doesn’t have 133 immediate relatives. Let’s assume in your family there’s 18 of you: 2 parents and 4 siblings, each of which with 4 kids. It is highly likely there would be two celiacs in your family if you have a celiac sibling.
Celiac Sibling Risk: How is Celiac Inherited?
There are nine genes for gluten intolerance but at this time only 2 of them are associated with this autoimmune disease. It’s estimated that about 30% of the U.S. population has the genes necessary for celiac disease. That’s a huge number. So the odds of having the gene are pretty good, but the percent of people diagnosed are much less.
Why is that? It has to do with lifestyle choices and stress. Carrying the gene and having the gene ‘turn on’ to develop celiac disease are two different things. Eating a diet high in wheat and gluten, a virus or other serious infection, and a traumatic stressful incident can turn this disease on.
According to Greco: “Certainly more than 5 per cent of the current population carry some specific genetic risk (of developing celiac disease).”
Greco’s findings on 1st Degree Relatives of Celiac Patients:
- 10% of parents, siblings, or children of a celiac have flat intestinal mucosa
- 30% of celiac siblings will have a mucosal response but no intestinal damage. (Flattened villi is present in celiacs with intestinal damage.)
- Within the EU there are at least 1 million cases of total gluten intolerance. About 1 million more folks in the EU are sensitive to gluten. Many cases were considered silent celiac, meaning the person tested had no noticeable symptoms.
What Can You Do if you Have a Celiac Sibling, Parent, Child?
- If you live in the Chicago area and are a celiac sibling, have a celiac parent, or a celiac child, register for a free celiac blood screening at the University of Chicago.
- If you have no symptoms, and test negative for a blood screening, get a genetic celiac screening done.
- To learn more about celiac disease and the many symptoms associated with it, read our celiac archives!