Lynn Robbins

Topics discussed

Common childhood symptoms
Finding a doctor who understands Celiac Disease

Video Text

Between the 6 th and the 9 th month check up, her weight dropped from 50 th percentile off the bottom of the growth chart. And I almost pooh-poohed it. I said, “Well you know those growth charts are normed on a whole lot of kids. She’s doing do well, I’m not going to panic about this. Really that was the first main sign that we had that something was not quite right. But we compensated by feeding her an enormous number of calories.

I was given a Christmas gift of a bread machine. And I thought “Oh this is terrific. Another way to provide her with healthy food and healthy calories” and I began to bake a lot. And I added gluten to everything I baked. Well after a few months of that, she got really, really sick and she was fatigued, she had dark circles under her eyes. She was eating constantly but losing weight, her body changed, where she had a huge bloated, distended belly, her arms and legs were emaciated, like toothpicks, she had no bottom and her pants would just slide right off of her.

When I decided to take her back in to the doctor, the family doctor, I remember very clearly the day that it happened. She was – we were standing in the kitchen and she said, “Mom, oh no, I can’t stop it.” And diarrhea just poured out of her clothing, all over the floor of our kitchen. And it had been kind of like that all summer long. And I stood there and watched this happen and thought, “How could I have waited so long to take this seriously and go back to the doctor?” I mean I had taken her in in May, but now it was August and this was continuing.

I went back into the doctors office and luckily I saw a different doctor that day – somebody who I knew personally, who was a friend and I just was panic-stricken and tearful and said, “You’ve got to help me. She’s losing weight and she was already underweight, and something is really, really wrong.” She said, “You’re absolutely right. Her weight has dropped. This is of concern. Let’s get her to a gastroenterologist right away.”

If you are a parent whose child is ill and you don’t have a diagnosis yet, what I would say to you are several things. One, is to really trust your own instincts. If you feel that there’s something wrong with your child’s health or your child’s development, don’t minimize it, don’t talk yourself out of it, take it seriously. When my child was first diagnosed, the gastroenterologist led us to believe that we would see an almost-miraculous recovery that within two weeks she would be a different person. I would say: Don’t expect a miraculous recovery. But do know that if you implement the diet, and you stick to the diet, your child will get better. It really will happen.

When my daughter was diagnosed, she was just shy of her 3rd birthday. And she was very delayed developmentally in a lot of different areas. Her verbal skills, her social

interactions, her size obviously, and her coordination. All of these things had become delayed during the course of her illness. The diet really did cure her, but it took some time. First she got emotionally more stable. Then she began to experience a lot less physical distress when she ate. She became lactose tolerant again, she um began to grow again. By the time she entered kindergarten, almost three years after diagnosis, she looked like a normal kid.

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