Lynn Robbins

Topics discussed:

Blood Tests
Common childhood symptoms
Misdiagnoses

Video Text

When my daughter was diagnosed, they told us that all first-degree relatives should have a blood test for Celiac Disease because it is genetic and your chance of having Celiac Disease are obviously much higher if you have a close relative with it. So at that time my husband and I and our older daughter all went off and had our blood tests.

I was also pregnant at that time. And then when my son was born, we watched him very, very carefully. Of course especially as soon as we introduced solid food. The advice that we were given was to go ahead and introduce gluten on the regular baby schedule, because there would be no way to know he had Celiac unless he was given gluten and then if he became symptomatic, we could test. Well like my daughter, he became symptomatic as soon as he started eating food. He had very, very severe constipation. So severe that I was feeding him a jar of prunes everyday, just to keep things more or less regular.

I immediately suspected Celiac and the doctor said, “It’s just too early to test. Keep feeding him barley” which is so hard to do. Because you feel like you’re poisoning your child. Each spoonful of food is like feeding them a little rat poison, but we wanted to know. Until the baby visit where I took him in and he had not gained weight. Well there’s nothing like not gaining weight to get the doctor’s attention. So at that point they did give him a blood test.

He was only 11 months old. We didn’t want to biopsy him at that age. And the doctor’s conclusion was: if we’re not getting a strong blood test result, we won’t get a strong biopsy result. But we’re concerned about the weight, we’ve got the family history, go ahead and put him on a gluten-free diet and we’ll see what happens. Well, within 6 weeks he gained 3 pounds. And the constipation completely resolved, and so we were convinced. We were sold that he was Celiac.

With my oldest daughter, her symptoms were not primarily gastrointestinal at all. Although we had a suspicion of possible Celiac, there was nothing conclusive until at age 9 her hair started to fall out. She was wearing cute hats and cute bandanas. By the time we found the hair loss, she had a huge patch on the back of her head. It really was just covered with fringe, like a comb-over. Well you can imagine, for a girl in 4th grade this is really an awful experience.

When I took her to the dermatologist and they said, “This is auto-immune called Alopecia Areata.” I said, “She has two siblings with Celiac Disease.” And they said, “No connection.” I didn’t believe that was true and I went on the internet and found another dermatologist, we tried traditional alopecia treatments without success. And we again had blood work done. Again, inconclusive. I said to the GI doctor, “I don’t care. She’s going gluten-free.”