MJS Principal Knows Food Allergy Challenges Firsthand

Now more than ever Nicole Sherrin Kessler trusts her maternal instincts. When her daughter Sydney, a preschooler, began complaining that her stomach hurt a little over a year ago, Kessler said she had a feeling it was more than just a routine ailment.

"Call it mother's intuition, something made me say, 'let me just get this checked out,'" recalled Kessler, a Wesfield resident who is principal at Madison Junior School. "She was bent over saying her belly hurt. She's a bright little girl; you just know something's not right. So I made an appointment with a pediatric gastrointerologist and she said 'I'll run the blood work for celiac and Crohn's' (diseases) and I got a call the next day. Her numbers were off the chart on the test for an antibody to gluten."

Kessler explained that while the average person might score between five and 10 on the test her daughter was given, Sydney's number was 169, confirming she has celiac disease. An auto-immune disorder, celiac disease is a digestive condition triggered by the consumption of the protein gluten, which is mainly found in bread, pasta, and many other foods containing wheat, barley or rye. 

Kessler explained that while Sydney cannot outgrow the disease, it can be managed by making dietary changes. The mom of three—Sydney has a twin brother and a 1-year-old sister—said making that adjustment was challenging initially. The family began by substituting gluten-free foods for the ones they usually ate but soon realized it was easier to cook differently. Instead of having pasta, the Kesslers now eat rice or potatoes, she said. They also seek out treats for Sydney that are already gluten-free, such as meringues, which the preschooler and her mom enjoy making together. 

"The toughest thing is the cross-contamination issue," said Kessler, who explained that if she spreads peanut butter on bread for Sydney's brother, she must remember not to put that knife back in the peanut butter before serving it to Sydney. "There's a learning curve. Outside the home is difficult, too. But it's really amazing how different people react. I was in tears the other day at Chipotle because the lady was so understanding. She offered to wash her hands and wear two pairs of gloves because she had touched a flour tortilla. When you see people who are understanding and want to help, it's really amazing."

Kessler said seeing her daughter through this has made her more of an advocate for all children with food intolerances. 

"I think as a parent and as an educator it just opened my eyes to how many things are surrounded by food and, for people who can't always partake in that, how to challenging that can be," she said. "Her school has been great. Her teacher has been amazing about trying to look for things that are inclusive. Because of this I've become sort of an advocate for kids in my school who have either celiac or other food allergies."

Walking for Awareness

On May 19, Sydney and her family will participate in the Center for Celiac Research 'Making Tracks for Celiacs' run/walk in Baltimore, Maryland. Nicole explained that although statistics indicate that 1 in every 133 people has celiac disease, it is one of the most underfunded because, so far, it cannot be treated with medication.

Initially, Sydney set a goal of raising $1,500 through her fundraising page.

"I’m thrilled to say that we’ve doubled our goal and it would be great to triple it," said Nicole. 

As part of the event, Sydney will have a chance to visit a gluten-free vendor fair and learn about and sample some new products to expand her diet.

Hard Work Pays Off

The Kessler family recently received some good news. After a year of maintaining a gluten-free diet, Sydney was tested again and this time scored a five, well within normal range.

"We were thrilled and it means we're doing a good job managing the diet and the body is not attacking itself anymore," Kessler said. "She's thriving but it's something that for the rest of her life, she'll have to keep up with."

Since her diagnosis and diet change, the Kesslers have a happier little girl.

"There's light at the end of the tunnel," she said. "She's feeling better. The reports from family, friends and teachers are that they see a whole different kid in the past year. She seems happier, less anxious, less shy. You don't realize, especially in the little ones, that she was probably never feeling well."

To other parents who suspect that their child may have celiac disease, Kessler says, "trust your gut."

"It doesn't hurt to get tested other than the prick of a needle. It's better to know than not know," she said. "While it's (facing a new diagnosis) upsetting and overwhelming, the difference you see in your child or your loved one, is worth all the struggle, the work. Getting that call that her number was down to a five, made it all worth it." 

Click here for more information on supporting Sydney Kessler on her 5K run/walk.