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Distended Belly: A Toddler With Celiac

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Chronic Constipation, Distended Belly, and the ER

Bethany became concerned when over-the-counter meds weren’t relieving her two-year-old’s constipation. She made an appointment with the pediatrician. 

After hearing Heidi’s symptoms and seeing her distended belly, the pediatrician sent them right to the emergency room at the local children’s hospital.

Five Days in the Hospital

Heidi was, “tested for everything under the sun” during those five days in the hospital, according to mom. Every test, however, came back negative. She was sent home on a Friday with no answer other than “toddler tummy.” 

Upon release, mom and dad were told there was one final test they were waiting to hear back on. Celiac, the last test they took.

The call came that Monday. They finally received an answer to Heidi’s chronic constipation and distended belly. She had celiac disease. 

Classic Celiac Symptoms

Doctors used to be taught that celiac was a rare childhood disease. They were told patients would present with severe and chronic diarrhea. They would be malnourished and emaciated looking.

We now know, however, that celiac has over 300 symptoms. It affects approximately 1:100 children, teens and adults. (There is an even greater number suffering from non-celiac gluten sensitivity.)

A person needs to have the gene in order to develop celiac. For the person with the gene, celiac can develop in childhood, as an adult, — or not at all. 

Far too many, however, are not tested at onset of symptoms. Far too many aren’t tested even months or years into symptoms—especially when diarrhea or weight loss aren’t part of the equation.

Education is so greatly needed.

According to this 2016 article from Mayo Clinic, 1:5 children with celiac disease present with constipation.

“About 1 in 5 children with celiac disease has constipation, so patients with constipation outside the range of what is physiologically normal should be screened. Kids with iron deficiency anemia that’s not responding to treatment should be tested, and any concern about growth should be checked.

“We are doing better at screening because of the vigilance of providers, but it can still be seven or eight years before some children are diagnosed.”

Did you see those last words of that snippet: “it can still be seven or eight years before some children are diagnosed.”  For many (like me) it took far longer than this. It took decades.

Explanations for symptoms (which can be physical as well as emotional) can often mean a person is mis-diagnosed with something else: “toddler tummy,” IBS, anxiety, depression, (and the list goes on).  And this 

A simple test. A change in diet. Life changing. 

Constipation Wasn't The First Sign

Hindsight is always 20-20. Celiac signs and symptoms can often be overlooked and be blamed on something else. It often isn’t until after a diagnosis that all the puzzle pieces make sense. And this was Heidi’s case. The 9 to 12 months of varying onset symptoms made sense once she was diagnosed. 

Heidi’s symptoms fell in both the physical and the emotional categories.

Physical Symptoms

Through the last months of her 2’s and the first months of her 3’s, Heidi became increasingly weaker. At a time when she should have been bursting with energy, she started avoiding physical activities. She would no longer go down a slide. She stopped walking up the stairs in their home.

She also still had cradle cap, something that is usually long gone by her age.

Vomiting. Heidi would randomly throw up. There was no consistency to the timing. There was no connection made to the food she ate. She didn’t throw up every time she ate, and when she did, it was often a while after a meal.

Bellyaches. Heidi complained of her stomach hurting during mealtime. This wasn’t consistent either. Her parents told her either, “It’s because you’re hungry,” or “You ate too much,” or “You didn’t eat enough.” These are realistic explanations.

Constipation. Issues with constipation had mom trying over-the-counter options. But they weren’t working. This was when the doctor sent them to the ER. The enema she was given while in the hospital didn’t even bring relief!

Distended belly. Heidi developed a distended belly and had little to no fat on her little frame. This is a classic look for a child with celiac—and yet it still took several other tests before a test for celiac was performed. 

Emotional Symptoms

Meltdowns. What two and three year old doesn’t have meltdowns? It can be hard to blame behaviors and emotions on a physical illness when other physical symptoms aren’t immediately present. But the emotional component can be a big one –and it can be the only one. 

Bethany shared that she and her husband thought they had “one of those kids” or that ii was “just a phase.”

Heidi wanted to be held all the time. They thought this was just who she was, a little on the clingy side.

Once Heidi was diagnosed and living free of gluten, it became apparent that she wasn’t “just one of those kids.” Her emotions stabilized in an obvious way.

Removing all gluten, however, can be a frustrating process.

A Little Guidance Please

Having a diagnosis is one thing. Transitioning to gluten free is another. It can be a daunting task when starting out. It’s not as simple as avoiding bread and pasta. There are all the complications of cross contamination, hidden ingredients, and the whole, how and what do I feed my child now?

Treatment for celiac isn’t surgery. Treatment doesn’t require medication. Patients are told: “Remove gluten.” And often times this is where instruction stops. But what does this mean? 

Guidance from a dietitian who specializes in celiac would be amazing. Direction can be broken down into these important categories: grocery shopping and label reading, cleaning and re-organizing the kitchen in order to avoid cross contamination, educating extended family, eating a well balanced meal, what’s up with oats, and what the heck is the difference between “gluten free” and “gluten removed.” 

Unfortunately, dietitians who specialize in celiac aren’t always available, however, and far too many newly diagnosed celiacs have to go to the internet to figure it all out.

The dietitian Bethany was referred to was on the not much help side. So instead of continuing with appointments, mom decided to learn on her own. She shared that her first shopping experience was greatly eased with the support of a co-worker who follows a gluten-free diet.

A New Child: Gluten Free

When health requires the removal of gluten, you remove gluten. Bethany had to dig in and just figure it out. Of course, the best foods are those that are naturally gluten free: fruit, veggies, meat, cheese, eggs, beans. But what about pizza? donuts? macaroni and cheese? 

Bethany discovered that Aldi’s version of mac and cheese was a winner for Heidi. And she found donuts in the freezer section that she liked. 

While mom appreciates the availability of all the gluten-free options these days, she agrees that it can be frustrating to have to pay so much more for these groceries. Yes indeed, the cost of bread, pasta, and gluten-free mixes is usually at least twice the price of their gluten containing counterparts. 

Having a healthy child, however, is priceless. 

A Brand New Child

Here’s my favorite part. The question: How is your child now that she’s gluten free? 

“I got a new child!” Bethany said. “It makes me tear up thinking about it. I went in to the doctor with a sick, lethargic, crabby, temper-tantrum filled child. After removing gluten I couldn’t believe the results. Everything went away.”

“Constipation- gone. Distended belly- gone. Temper tantrums- gone (for the most part). She was still three. But they weren’t constant!. She began walking up our stairs again, going down slides, and running around playing like a typical 3-year-old. She had energy again. Her cradle cap went away too.”

Heidi’s been gluten free for five years now. And she’s a normal, happy, healthy, 8-year-old who is “full of life and energy!”

She’s active in soccer, gymnastics, piano, and art. “I think about how she was before diagnosis and I know none of this would be possible otherwise,” mom shared.

Support Is Everything

Bethany is humbled by the support and care they receive from family, friends, church, and school. Family on both sides either make shared meals gluten free or provide a replacement for Heidi if the meal isn’t gluten free. Bethany’s friends and many school parents provide gluten-free treats in order to include Heidi.

Even with phenomenal support, the social element can cause some sadness, naturally. Many (many) adults struggle with the social element. For a parent, it can be heartbreaking knowing their child has to often say “no thank you” when it comes to the food part of a social experience. There have to be more lessons on where to place focus in regards to events: the people. And there has to be education in preparing ahead: eating prior to joining friends or often bringing suitable replacements.  

Bethany shared that while Heidi occasionally gets “bummed” when she can’t eat what everyone else is eating, these moments are the exception rather than the rule for her. 

What Happens When She Gets Gluten?

Heidi rarely gets accidental gluten. But when she does, her body reacts. She throws up. Not just once or twice. She throws up for hours! While she would vomit randomly prior to diagnosis, it was nothing like it is now. Yes indeed, gluten is poison to her body. 

Education Still Needed

The gastroenterologist they were initially referred to (after Heidi was diagnosed) didn’t seem to understand the connections between symptoms and gluten in a celiac patient. When mom listed Heidi’s symptoms, and then told her that all these symptoms disappeared when gluten was removed, this doctor looked at Bethany in disbelief. “Really?” she asked. “She doesn’t have any more symptoms just because you removed gluten?”

YES! This is the treatment for a person with celiac. Remove gluten, the protein found in wheat, rye, and barley, in order to remove the immunological response. 

This reaction (from the professional she was sent to for follow-up care) frustrated mom. So she moved on to another doctor. And rightfully so. YES! Removing gluten is vital for a person with celiac. Celiac 101. If a doctor that specializes in diseases of the digestive system doesn’t understand this, then yes, please move on.

A Final Word From Mom

“I feel very grateful she was diagnosed at an early age and didn’t go through years of misery. I am also very proud of her; she is such a trooper when it comes to understanding that she can’t eat like all of her friends or family. Yes she complains once in a while, but it is few and far between. And she has a right to let it all out once in a while. She takes it like a champ and makes the best of it.”

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Be sure to request celiac tests before removing gluten from your diet.

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