We took Olivia last week to Riley to see a pediatric gastroenterologist because of celiac disease. This was the first available appointment. Kids with Down syndrome are to be screened for celiac disease between the ages of 2 and 3. Olivia was screened twice in November and her numbers indicated Celiac disease. When we were given a copy of her blood test results just prior to going to Indy, we were concerned that her numbers were not just slightly elevated but were significantly elevated. A bit of shaking in our boots in the days proceeding the doctor appointment. The GI doctor was very kind and comforting and confirmed that Olivia does indeed have celiac disease and talked to us about the seriousness of having her stay away from gluten in order to avoid intestinal damage. He also reassured us that a gluten free diet is healthy nutritionally but that he always has new celiac patients see a dietician. The dietician can help us learn how to keep Olivia away from gluten in hidden ways in processed foods. Even some grains other than wheat have gluten as the Physical Therapist was reminding me. We need to educate ourselves (and others who care for Olivia) fully in order to protect Olivia's small intestine.
We have seen positive results with Olivia off gluten. The pediatrician felt that taking her off gluten in November was a good way to go because Olivia was symptomatic and we had a 2 month wait to see the specialist. Olivia's strength is the main thing to strike us. The physical therapist could not understand why Olivia was not getting stronger to walk, but within weeks off gluten her strength improved remarkably and she started really walking! She has taken to amazing us at her endurance to walk long distances and carrying things and walking backwards, dancing and walking on soft mats at therapy. Her social-ness and bravery has returned also. It is so nice to see her once again so very friendly when we go out and about. But I noticed today that I have to keep a very close close eye on her because she sees someone she is interested in visiting with and off she goes in a hurry! The physical therapist commented today that Olivia has made progress in her walking so much faster than she usually sees in kids who have struggled so much to get to this point. She also agrees that it is the celiac disease that was holding Olivia back.
So, we do have to avoid gluten for Olivia, but the reward we get is that we have a strong, happy, friendly little girl!