Amy Rattner

Topics discussed:

Common childhood symptoms
Misdiagnoses

Video Text

My daughter, Amanda was 2 years old. She was rapidly losing weight. She had a distended belly and suddenly, this totally healthy, normal child took a rapid, rapid decline into a category of a child who: We really weren’t sure that she was going to live. It was that cold hand of absolute fear that I don’t think any parent can really describe (tight) just placed right on the flat of your back.

I was sure it was cancer. I was convinced that she had some form of childhood leukemia that was unknown to most people and that’s why her doctor couldn’t find out what it was ‘cause all of her tests – every test that he was running – was coming back negative. But the scariest test they ran was for Cystic Fibrosis. And I did have a doctor who told me that he was 98% sure that she had Cystic Fibrosis. And I knew just enough about Cystic Fibrosis to be really retightened.

And right at that exact moment, we came to a meeting of the minds and he sent her to a diagnostic clinic where they try to determine what is wrong with very sick children where no one knows what’s wrong with them which – in and of itself – scared me to death. You probably don’t want this diagnosis. And so when you look at the number of symptoms that a person with Celiac Disease might present with – or that your child might have – and let’s say you find a list that has 10 of them. And your child only have 5, you’re like “Oh thank God. It can’t be that” when that doesn’t really mean anything. The fact of the matter is that there are some children with Celiac Disease who have no symptoms whatsoever.

I do wish that when she was 2 years old in a certain way I could have had a crystal ball to see that I would survive all of these little steps that worry every parent along the way – that I would have been able to understand that most Celiac kids are very resilient. They adapt to the diet, they stick to it because they don’t want to feel bad, because in a sense it’s all they really know. That’s the other thing that I think makes it a little easier for them. I wish I could have been able to see that she could be socially as normal as she is, because I worried about that a lot – that my other children could adjust to her diet, that our extended family could accept it.

And I wish I had been able to know then what I know now and that is that: Amanda will have a full, healthy, normal life. Your child can grow up to be a happy, healthy, totally normal child. They can go through elementary school. They can join girl scouts. They can participate in sports. They can go away to sleep-away camps. They can dance on their high school dance team. They can be a cheerleader. Your child can be anything and everything they want to be and the Celiac Disease is 100% secondary.

I’m Amy Rattner, my daughter Amanda’s 15. She has Celiac Disease and we are living our life.