Lynn Robbins

Topics discussed

Common childhood symptoms
Finding a doctor who understands Celiac Disease

Video Text

When my daughter was born she was a healthy child in every way and her development proceeded very normally until the time that she began to eat food. We noticed that she wasn’t well, but we didn’t really have a clear idea of what wasn’t right. Until she began having terrible, terrible diarrhea. By “terrible” I mean to the point where a diaper would not hold it and it would come through the diaper onto her clothes and we took her at that point to the doctor who began a whole lot of different tests and couldn’t find anything.

Unfortunately with Celiac Disease, the symptoms can come and go. So when there was a period where the diarrhea would resolve, I would think that I had found whatever the problem was. For a while I thought it was strawberries. They were talking about cyclosporine in strawberries. For a while I thought it was our tap water because there was suspicion about the quality of our tap water. During that period of time – before my daughter was diagnosed – I would say our feelings really fluctuated wildly. Some days we would say “Everything is fine. Until the physical symptoms really escalated to the point where we couldn’t look away any longer.

I felt guilt-stricken. I felt like a terrible mother. I was really panicked that something you know – so terrible was wrong with her that it could be something like cancer or liver problems or – I had no idea what it might be. But it was so obviously something very, very wrong. When I took her back in to the doctor – when the diarrhea just would not resolve – I was lucky that the doctor that I happened to see that day was this old friend. So she referred us to a gastroenterologist and that was the doctor who made the diagnosis. It did take several more months, actually to get a diagnosis, which I kind of regret now. I had a feeling that it might be Celiac Disease, because I had read a little bit about it. I think the doctor even felt it might be Celiac Disease, because of questions that she asked me during the first visit.

Absolutely trust your instinct. You know better than anyone else if something is not right with your child. It felt so great to watch her get healthy. It was like watching a house plant that’s wilted and you give it a little water and a little Miracle Grow and suddenly it comes back to life. And what’s interesting about that is that she almost – still has a reaction like that – if she’s hungry a Celiac child will almost wilt in front of your eyes. And I’ve heard from other parents that this almost never goes away. And if she’s out of sorts or tired or discouraged, we find that if we offer her a snack, she suddenly blossoms and comes back to life and seeing that happen; it makes everything worth it. It makes all the special shopping and food preparation, it’s like nothing to me. I’m so happy to do it because of course what every parent wants is for their child to – to flourish.

I’m Lynn Robbins, my daughter is 12 years old and she has Celiac Disease. And we’re living our life.