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From the Time Food Was Introduced
Ava started to get sick as soon as solid food was introduced. At a time when weight should be increasing, Ava started losing weight–and her hair. But what would cause a one-year-old to experience weight loss and hair loss?
At just one year of age, Ava didn’t even reach the first percentile for weight, according to her mom, Kate. She was in and out of the hospital for various problems and without answers. One pediatrician put the blame on mom, basically telling her that Ava’s symptoms were all in her head.
Besides weight loss and alopecia, Ava also suffered from stomach pain, vomiting, bruising, and rashes (and other skin problems). She tired easily and had walking and balance issues.
At 18 months, Ava was referred to a gastroenterologist for chronic constipation. When mom asked about the potential for celiac disease, she was told that her daughter’s initial blood work didn’t indicate the need for a celiac panel.
Alopecia continued. Weight loss continued. At age two, Ava weighed only 20 pounds. She hadn’t gained any weight between her first and second birthday.
A family move to another state meant having to find another pediatrician. This new doctor suspected celiac when he saw Ava and referred her to another gastroenterologist. The blood work was positive for celiac. No biopsy was conducted.
Transition to Gluten Free
Kate was referred to a dietitian for support with Ava’s new gluten-free requirements and with assistance in Ava’s weight gain needs. That support, however, was less than helpful. The information the dietitian gave mom included options that contained wheat! “She basically printed off some websites and gave them to us and said come back in 6 months if Ava was still little,” mom shared.
Without adequate assistance from the dietitian, Kate was on her own to research Ava’s needs. But even so, Kate said she found the transition to gluten free “surprisingly easy.” Her daughter had been so sick that, “having an answer and knowing we could control her pain and illness made the process relatively easy,” she shared.
I have no doubt that mom’s positive attitude reflected on her daughter, as she had no problem with her new diet. “We found substitutes for her favorite snacks,” mom shared. And after trying several brands, they landed on the bread that suited her as well. She can still enjoy her favorite foods: grilled cheese and fresh fruit.
While she keeps gluten very limited in the house, Kate says that she will eat gluten outside of the home when her daughter isn’t with her. Mom is grateful for all the gluten-free safe options in her area when it comes to dining out. She is also grateful to have a dedicated gluten-free bakery close by.
Now that she’s gluten free, Ava is a different child. “My daughter is gaining weight, her hair has grown back in, her GI problems have resolved and she’s very happy,” Kate shared. She’s able to concentrate and she no longer has to suffer through constant stomach aches.
“It was amazing how after just a few weeks off of gluten we began to see an improvement in Ava,” mom said. “She now wants to grow up to be a pediatrician so she can help other sick kids like her get better.” Wow! We’re cheering you on, Ava!
Ava currently receives OT (occupational therapy) and PT (physical therapy) to help as she continues to regain her strength and coordination. She enjoys ballet and gymnastic classes and she looks forward to learning how to play soccer or baseball.
Kate was grateful to discover that the answer to Ava’s health issues is an answer she has control of. It is still hard for her to remember those times when she felt accused of exaggerating her daughter’s symptoms. And she sometimes wishes she would have been more demanding about celiac testing earlier. But that’s what moms do, they feel guilty. Hindsight is always 20/20. We trust and rely on the medical professionals.
You’re doing a great job Kate. Yes indeed, there is power in having an answer and having the ability to take control. As for having a positive outlook, well, that is the most important thing of all!