Kendall was just 3 years old when she started exhibiting some unusual symptoms. She began getting stomach aches fairly regularly and had what looked like eczema showing up on her arms. There were no other symptoms, and the stomach aches weren’t debilitating.
“For about six months she kept saying, ‘My stomach hurts,’ but then she would smile and run off and keep playing,” says Amy Hoerig, Kendall’s mother, who lives in Bay Village. “It wouldn’t stop her from anything. And so we’re just like, ‘Is it potty training things?’ Because around that age, who knows? So, we didn’t think too much of it.”
Amy and her husband, Brady, mentioned Kendall’s symptoms to her pediatrician, but the doctor wasn’t concerned at first. But after about a year, the symptoms continued and the pediatrician recommended a visit to a gastroenterologist.
The gastroenterologist tested Kendall for celiac disease, and when the results came back, her indicator numbers were through the roof.
“They called and were like, ‘Yeah, this is definite.’ I had vaguely heard of celiac but didn’t know anything about it whatsoever,” Hoerig says.
This was back in 2014, when there weren’t many resources or store-bought foods available for a celiac diagnosis. The Hoerigs were referred to a nutritionist who seemed unfamiliar with celiac. They ultimately relied on their own research, a couple of recommended websites, and family and friends with similar conditions to navigate Kendall’s diagnosis.
What is Celiac Disease?
One of the most common misconceptions of celiac is that it is a gluten allergy or sensitivity. While gluten sensitivities do exist, celiac is different in that it is a lifelong, genetic autoimmune disease triggered in certain individuals by eating gluten, which is typically found in wheat, barley and rye. Though it is a genetic disease, a parent carrying the celiac genes may not have celiac disease.
“You have to have the genetic predisposition in order to develop celiac disease,” says Claire Baker, director of communications for Beyond Celiac, a patient advocacy organization. “Forty percent of the population has one or both genes for celiac disease, but only 1 percent of the population gets it. It’s the only autoimmune disease that actually has a known trigger (gluten), and that’s only in connection with something that happens to a person who has the genetic predisposition to set it off.”
The presence of gluten, the genetic predisposition and a stressor all need to be present in order for celiac disease to occur. The stressor could be exposure to a virus or it could be trauma-related, which could mean pregnancy or severe emotional stress. That stressor then triggers the autoimmune system to start reacting to gluten as if it’s a bad thing.
“It’s not something your body should be fighting, but the autoimmune system can get triggered in the presence of gluten and our bodies then start essentially attacking the small intestine,” Baker says.
Beyond Celiac estimates that only 3 percent of people with celiac disease were diagnosed when the organization launched in 2003. Today, it estimates 17 percent of people are diagnosed, which means there are still many people unknowingly living with celiac.
If left untreated, it can severely damage parts of the small intestine called the villi, which are responsible for absorbing nutrients into the body. According to Beyond Celiac, damaged villi make it nearly impossible for the body to absorb nutrients into the bloodstream, leading to malnourishment and a host of other problems, including some cancers, thyroid disease, osteoporosis, infertility and the onset of other autoimmune diseases.
The only way to combat celiac’s effect is by adhering to a strict gluten-free diet for life. While that may seem like a major challenge — and it’s certainly a big lifestyle shift for many families — it’s becoming easier to manage for several reasons. Celiac disease has become more recognized and prevalent in recent years, and resources are more readily available.
Since gluten is pervasive in American diets, it can be difficult to know whether something you’re buying at the grocery store is truly gluten-free. On top of that, the dietary trend of going gluten-free as a nutritional choice has contributed to a lax attitude toward labeling in some cases, which is challenging for celiac patients for whom even the slightest exposure could mean getting sick.
A certified gluten-free label is similar to the certified organic label in the U.S., so there is oversight by a governing body to make sure a certified product is safe for celiac consumption. There are several governing bodies that issue certifications, including Gluten-Free Certification Program, created by the Allergen Control Group and the Canadian Celiac Association. There’s also Gluten-Free Certification Organization, created by the Gluten Intolerance Group; and National Celiac Association.
When shopping, look for the certified gluten-free symbol on packaging or packaging that says “gluten free.” If there isn’t a label, dig deep into the ingredients list and fine print for any indicators that the food may contain gluten.
“With Kendall, she reacts within 15 minutes if there’s gluten in it,” Hoerig says, noting her typical reaction is a belly ache. “There have been maybe a handful of times where she’s accidentally had something, and we can tell. She can tell us right away.”
Andrea Wien, a functional nutritional therapy practitioner who was diagnosed with celiac disease, recommends keeping an eye out for a statement like “Made in a facility that also produces wheat,” or “Made on machinery that also processes wheat.” Those claims indicate the possibility of cross-contamination and should be avoided.
“My biggest tip is stay away from the packaged stuff that’s labeled gluten free and just buy real food,” Wien says. “And for those just starting the new lifestyle, get some backup. I think it’s helpful when you first get diagnosed to actually take a nutritionist or a dietician, someone that you trust in that space, to the grocery store with you and literally walk up and down the aisles and read the ingredient labels.”
Family Outings Are Still a Go
Just because there’s a celiac diagnosis doesn’t mean going out to eat, traveling or going to birthday parties are off the table. It just takes a little extra planning and the willingness to ask questions.
“If we go on vacation, I have to search for places to eat,” Hoerig says. “A lot of times, restaurants don’t always list it if they have gluten free on the menu if you just go on the website. So, I’ll call every single restaurant in the vicinity of where we’ll be. And then if we’re driving, I’ll always make sure the route that we’re taking has gluten-free places to stop on it.”
Even if something is labeled gluten free on a menu, take the extra step and let the serving staff, manager and kitchen staff know that your child has celiac disease, and don’t hesitate to ask questions to make sure there isn’t cross-contamination during food prep.
Things like french fries, scrambled eggs or gluten-free pancakes may seem like a good choice (and typically are), but verify that the pancakes are made on a separate part of the griddle from gluten-containing menu items, or that the french fries are fried in oil separate from the breaded shrimp. Even the utensils used to prepare the food should be designated gluten-free to avoid exposure.
“Every time you’re eating out, you’re taking a chance,” Wien says. “But if something does happen and your kid gets sick, follow up with that restaurant management and let them know what happened, so they can improve whatever’s going on behind the scenes. Following up on that can be really important for people moving forward.”
The same kind of up-front work helps with things like school events and birthday parties, where you have less control over what food types will be available. Calling the school or hosts ahead of time to let them know your child has celiac disease, and asking what they’ll be serving so you can pack an alternative can be helpful.
“With Kendall’s classes, I’ve always sent in a box that they can keep there throughout the year that I restock with things in like cookies and snacks, in case there’s a birthday party where kids bring in a treat,” Hoerig says. “So whenever there might be something she can’t have or even if she’s not quite sure, she just goes right to her box of treats instead. For birthday parties, I usually send a gluten-free pizza with her in a separate container and then I’ll usually make gluten-free cupcakes and send that along, or a gluten-free donut.”
It’s helpful to pack celiac-safe snacks anywhere you go, just in case your child gets hungry while out and about, or if he or she is not interested in anything gluten-free on the menu.
Talking to Your Kid About the Celiac Diagnosis
Depending on where your child is in his or her development, give him or her as much control over the situation as you can. Younger kids diagnosed early in life will likely grow up in a gluten-free lifestyle and not know anything different. Older kids may have more of an adjustment period, but in all, they’ll find their rhythm. The important thing is to be supportive and dedicated to keeping your child safe and healthy.
“Many kids love to be helpers. They love to solve problems,” Baker says. “Have it be something that they can own as their decision more than being imposed from the outside. You want to create a situation where your child knows what’s good for them, they have the tools to manage making good food choices and figuring out substitutions on their own as they grow older and you have less say over where and when they eat.”
With younger kids, it’s often easiest to speak plainly and explain that something called gluten makes some people sick, and they’re one of those special people. Teach them the words “celiac” and “gluten,” and how to ask a grown-up if there is gluten in something to make sure it won’t make them sick. Talk through common foods that have gluten in them (like bread, pretzels, crackers and cookies), so they know that they can’t have those foods unless they check whether or not they’re gluten-free.
Symptoms of Celiac Disease
If your child is exhibiting any of these symptoms, talk with his or her pediatrician about testing for celiac disease:
- Chronic diarrhea or constipation
- Abdominal pain
- Bloating and gas
- Damaged or discolored tooth enamel
- Skin rashes (known as dermatitis herpetiformis)
- Iron deficiency anemia
- Decreased appetite
- Delayed growth or puberty
- Thin bones/frequent fractures
- Failure to thrive
- Short stature
Source: Beyond Celiac, www.beyondceliac.org
Gluten-Containing Items to Watch out For
Food is one thing, but there are many nonedible items that may contain gluten to be aware of if your child has celiac. If they use an item and then put their hands in their mouths or touch food afterward, it could be a problem. Check the ingredients of the following products carefully. When in doubt, verify with a manufacturer whether or not an item contains gluten.
- Nail polishes
- Soaps, shampoos and conditioners
- Face masks or skin treatments
- Lip balms, chapsticks and glosses
- Pet foods