Amy Rattner

Topics discussed

Arming yourself with information
Blood tests
Finding a doctor who understands Celiac Disease

Video Text

She was taken to the pediatrician and he kept saying “Wait a little while. We’ll see how it plays out.” And then he started to suggest tests and running tests. And that was the moment when we started thinking, “This is serious.” I was feeling like, If someone doesn’t help her I think it’s going to be up to me and not that he wasn’t responsive. He was. It was just that – and I take her to a pediatrician who has a fairly large practice. At that time, after she was diagnosed, she was the ONLY Celiac patient he had. But I felt like: If nobody can help her than it’s up to me.

If something has led you to consider this disease, then you need to know and arm yourself with information about this disease and how it’s diagnosed. Because you’ll probably hear the words “She doesn’t present as though she has Celiac Disease.” “She has failure to thrive.” “He is perfectly normal.” “You’re just worrying too much.” You, inside of you, know better than anybody else that something isn’t right. And I would suggest that you do some things that really weren’t available to me. And that is: Know what the blood test are. Make sure that they’re run. Some doctors give you a very hard time about running these blood tests.

I would say: If you’re on the internet and you’re looking around, that there are centers all around the country that will give you good, reliable information. They can hook you up, wherever you are, with someone who can help you. And if you arm yourself with information, get the blood tests.

I would suggest that you – in the early stage – get most of your information from really, really reliable, medically-based places. The groups of other people who have Celiac Disease are wonderful, wonderful resources. And if you are making something and you want to use an ingredient and you don’t really know, you can go to the internet and get an answer, “I’ve researched this.” But when it comes to medicine, there are a lot of people out there with a lot of different ideas about what would constitute the need for a gluten-free diet. My suggestion in terms of looking for information would be: To make sure – especially at this early stage – from really reliable sources.