celiac screening

Posted by in celiac, family, food

IMG_4149i took our three boys to get their blood tests this morning to check for celiac antibodies. it’s the first step in testing to see if one has celiac disease.  here are a few statistics from the National Foundation for Celiac Awareness:

1 in 22 first-degree family members (parent, child, sibling) and 1 in 39 second-degree family members (aunt, uncle, niece, nephew, grandparent, grandchild and half-sibling) are at risk for celiac disease. Your risk may double if your brother or sister has celiac disease.

they have a much better chance than most americans of getting celiac because their mother has it. we had a discussion at breakfast about the blood test and the test results, and all three of them came to the decision unanimously that if one of them tested positive for celiac, then all three of them would join the gluten-free (GF) lifestyle with their mama.  if one of them tests positive for celiac antibodies from the blood test, the next step is to have a biopsy of their small intestine (via an endoscopy). they will have to continue consuming gluten until that test is over, so we have a few months before they would have to give up gluten altogether.

their pediatrician suggested that if they all test negative for celiac antibodies, they don’t have to get tested again until they start showing symptoms of celiac. but my gastroenterologist has suggested that they be tested every five years since one in three patients with celiac disease ever show symptoms.  who knows how long i was walking around with full blown celiac disease since my symptoms started 19 months ago?

there is a tricky line here, that i have to tow with them.  if one of them does test positive for celiac, and they all decide to go gluten-free i will have to figure out ways to get gluten into the non-diagnosed brothers’ diets from time to time so that they can test again in five years. when you are tested for celiac disease, you need to have been consuming gluten so that the tests are comprehensive, and show small intestine damage.  if you decide to go gluten-free because it makes you feel good, or because people in your family are celiac patients, then you can’t ever test positive for celiac (even if you have it).  but if you’re going to live gluten-free for the rest of your life, it doesn’t matter if you know if you have celiac or not, since the only cure for celiac is a gluten-free diet.

it’s confusing, but worth it to me to stay on top of research and studies about it.  i’m hoping they’re all negative so that at least they can live a somewhat normal childhood.  however, if they need to be gluten-free, their quality of life is still the same,,,just different.