My daughter was just recently officially diagnosed with celiac disease. She is 6 years old. When she was about 12 months old, she started to slip on the growth charts. She went from the 55th percentile to below the 5th in just 3 months and actually began losing weight. We went through so many tests and scans. She also started to not eat full meals.
We were told that she had elevated IgG levels by the pediatricians and that they were concerned about celiac disease. We went to the gastroenterology specialists at our children’s hospital and they said my daughter most definitely did not have celiac because her IgG was negative. They recommended no biopsy and said that we should just wait it out.
My daughter finally started to gain, just ounces, by 18-24 months. At this point, she was well below the 3rd percentile in height and weight. In the meantime, she developed terrible problems with her bowels, large bags beneath her eyes, and refused to eat more than 10 bites per meal despite always saying she was hungry.
Fast forward several years and we were back at the pediatrician’s, begging to help us figure out what was going on. At this point, she had a diagnosed speech and language disability, bloody noses 4-5 days per week, her legs hurt so badly she couldn't walk very far most of the time, and she would take 3-4 hours to eat every meal with constant belly aches. Doctors tested her for cancer and other big bad uglies and all came up fine....except she was vitamin deficient and anemic. We kept asking about celiac disease, but continued to be told that her IgG levels were fine and that it must be something else.
We finally just decided to go gluten-free. We were at a loss. We thought it wouldn't do much, but had to find out if it would help. Within 6-8 weeks, we had a different child. More energy, full meals, distended stomach gone, bags under eyes gone, anemia gone, and she actually enjoyed eating!
One year later, she is being dismissed from speech and language therapy – they told us they have never seen a child so quickly catch up. Oh, and she's happy and gaining weight so quickly. We were lucky to find the Celiac Center through the University of Maryland, and they have been wonderful. Our only regret is that she spent so many years so sick for no reason.
I am hopeful that gastroenterologists continue to become more knowledgeable about celiac disease and reading blood screens on toddlers as we now know that that oftentimes the IgG is negative in children under 2 years. I hope that anyone else in this position finds a celiac center or a specialist in this disease and gets answers for their child's health.