A story of a mother and her pre-school age daughter working through the challenges of Celiac Disease. Learn how intuition and a mother’s love brought healing to a baby girl.
There is something inherently special about a bond between a mother and a child. There is a connection between the two that goes beyond understanding, beyond anything of this Earth—a spiritual connection. Because of this connection, mothers instinctively sense changes in their children that even a doctor can’t detect.
Meet Kelly Johnson, a loving mother to two beautiful children, Elliana 4 and Luca 2. Kelly is living proof that mother always knows best.
Kelly has always felt a special connection with her daughter, Elliana, from the moment she was born. Kelly believes that the two of them were meant to find each other and journey through this life together. “A long time ago, our souls agreed that she would be my daughter and I would be her mother,” she said. Looking at her daughter, she sees the inherent wisdom she held as a child and feels the tug of her heartstrings as her old soul resonates with her daughter’s.
“A long time ago, our souls agreed that she would be my daughter and I would be her mother.”
As a mother-daughter duo, the two share more than just similar sensibilities; their connection to one another was affirmed by genetics after a diagnosis of Celiac Disease; first in Kelly and then in Elliana.
After Kelly gave birth to her second child, Luca, she really started to notice an increase in her symptoms. She had suffered for years from migraines, from gastrointestinal issues, frequent ear infections, sinus issues, and countless other ailments. Yet this time was worse. Her acid reflux became so bad that she found herself buying antacids in bulk, trying desperately to get rid of it. She also had issues with her bowel movements, leading the doctor to suspect Irritable Bowel Syndrome. All effort to remedy the issues, through medication and cutting out certain foods like meats, offered her no relief.
At a family gathering Kelly’s relatives began questioning the condition of her health. She had given birth recently and her weight loss had been rapid. The change was dramatic enough that her mother approached her, saying the family was worried she had an eating disorder. Kelly was devastated to hear these words come from her mother’s mouth. She knew she’d been eating and hadn’t realized her significant weight loss had become an issue, not realizing at the time that this was a symptom of Celiac Disease.
She consulted her doctor who ran further tests and discovered that her liver enzymes were high. Still, her doctor was short on answers as to what was wrong, leaving Kelly to search out answers on her own. A friend suggested that Kelly try cutting out gluten and willing to try anything to help ease the gastrointestinal issues, she gave it a shot. After just a week, her symptoms subsided.
A friend suggested that Kelly try cutting out gluten and willing to try anything to help ease the gastrointestinal issues, she gave it a shot. After just a week, her symptoms subsided.
This relief turned out to be the missing puzzle piece she’d been looking for. Armed with her new information, she consulted her doctor about Celiac, but wasn’t immediately presented with a diagnosis. The doctors still thought it was an IBS flare and were hesitant to test for Celiac disease. “It’s often the doctors and the people around you telling you it’s all in your head because you look okay,” Kelly said. She was frustrated that they weren’t listening to her. She knew her body and, trusting herself, she kept pushing, kept researching, and kept seeing out doctors until she was finally tested for Celiac and diagnosed.
“It’s often the doctors and the people around you telling you it’s all in your head because you look okay.”
Due to her own experience with Celiac Disease, Kelly was able to recognize an echo of her symptoms in her young daughter. Because Celiac is a genetic condition, Kelly realized she needed to be on the lookout for symptoms in her children. “I honestly wouldn’t have asked to get my daughter tested if I hadn’t felt some of the symptoms myself,” Kelly said.
Like Kelly, her daughter, as a baby, suffered from what they assumed was acid reflux. She was experiencing frequent loose stools and would spend most of the day screaming. As a first-time mom, Kelly had a lot of self-doubt on how she was taking care of her baby, and having her constantly crying made her question her ability to parent. Her husband was a big help, but sleep deprivation and the constant crying pushed her to her limits. Her doctor recommended adding oatmeal to her milk, still unaware that gluten was the problem.
When she noticed that her daughter wasn’t gaining weight, she knew that something was wrong. Once again, doing her own research, she had to be an advocate. This time for her tiny daughter who couldn’t communicate for herself. The doctors, like with Kelly, were again hesitant to test for Celiac, but her mother’s intuition detected what the doctors couldn’t see. Kelly insisted her daughter get tested for Celiac. When the doctor called with the results of her daughter’s tests, Kelly cried. She cried because she had known, and there was a sense of relief in confirming that her mommy instincts had been right and she was able to help her daughter. “Because of me, we caught it early and she is less likely to develop another auto-immune deficiency.”
Once again, doing her own research, she had to be an advocate. This time for her tiny daughter who couldn’t communicate for herself.
Elliana is now in pre-school and having a child that young with Celiac has been challenging. Kelly is teaching her daughter all about gluten and what foods she can and cannot have. She feels guilty at times because she thinks she’s denying her daughter Elliana a normal childhood. When other families are eating fast food, she has to explain about cross-contamination and why she can’t eat french fries.
Kelly often reminds herself that she’s giving her child the opportunity to nourish her body with healthier options. And Elliana has been a trooper throughout the whole process. She has learned to enjoy the foods that she’s allowed to eat and even reminding adults that she has to eat gluten-free when they offer her something she can’t have. “A classmate brought cupcakes for their birthday, and my daughter told them ‘I can’t have that’ and happily ate her grapes,” Kelly described, beaming with pride at her the wisdom of her four-year-old.
“In being a mom, I found the opportunity to love me and have a voice. Because through my love for me I can love them even more.”
As a parent, trusting yourself and your instincts can be hard. You’re going to make mistakes and challenging things are inevitably going to happen, whether that be discipline issues, arguments, or health scares. “But you can’t know the good without the bad,” Kelly says. You have to trust yourself, as she has learned to do, and love yourself for just being human and keep trying your best, no matter what. That is where the healing starts. Trust your mommy instincts—they’re never wrong.
You have to trust yourself, love yourself for just being human, and keep trying your best, no matter what.
Glad to see a mama that pushed for answers. I almost lost my first son 25 years ago when he was literally wasting away before our eyes and no one had any answers. at the age of 5 he had shrunk back to under 30 lbs. Finally someone listened and did a biopsy diagnosing him with Celiac/Sprue. No one had heard of it and the internet was not an option for resources. I dug and researched and worked long and hard to find foods, and create recipes to nourish him. Over the years I have had 4 children and 3 of them have been diagnosed with Celiac disease ( I was diagnosed shortly after my oldest son). Always trust a mother’s instinct!
Marla,
Thank you for sharing such a vulnerable and beautiful story. You are clearly a pioneer!
I would love to hear more. You are welcome to email me at inspire(@)loveself.org.
Many blessings,
Rachel