Celiac in the Family
Jennie, 42, was familiar with celiac. She had a cousin with it. It wasn’t necessarily on her radar for herself, however. When she was struggling with unexplained anemia, her primary care physician referred her to a gastroenterologist. Eventually, there would be more celiac in the family than just one cousin. A lot more.
All First Degree Relatives Should Be Tested For Celiac
I often hear, “No one else in my family has celiac.” But have they all been tested? Jennie’s family could be a more accurate representation of what celiac in families looks like if all members are tested.
The absence of symptoms shouldn’t prevent a family member from being screened for celiac, according to a recently released study from Mayo clinic. This study found that 160 of the 360 first degree relatives that were screened tested positive. That’s 44%!! Forty-four percent! This is huge!
Interestingly, only 6% of those with positive results had classic celiac symptoms and 66% had non-classic symptoms. And, drum roll please . . . 42% of those who tested positive had no reported symptoms.
With a positive celiac blood test, Jennie was put on the schedule for a biopsy the following month. While she waited, she decided to go on a farewell tour of gluten, giving all her favorites a final indulgence.
And on the first day of the month following her biopsy, gluten became a thing of the past.
Symptoms in Retrospect
Jennie thought that fatigue and anemia were the only symptoms she had. She didn’t realize that gas was another symptom until it disappeared when gluten disappeared. And that’s the way it can be. We learn to accept certain things, not realizing they are not normal.
If you think gluten free is socially isolating– Excessive gas can certainly cause stress in social situations as well. But we learn to live with various symptoms, thinking, This is just how I am.
It wasn’t just how she was, however. It was due to undiagnosed celiac, a condition that was causing damage to her small intestines and creating interference with her ability to absorb nutrients properly.
Step Back Six Months
About six months before Jennie was diagnosed with celiac, her almost-two-year-old daughter, Andrea, came down with a stomach bug. Mom said she quickly became lethargic and barely responsive. They brought her to the ER where her blood sugar level was found to be only 30, which is dangerously low.
She was put on an IV to bring her sugar level up, and was given medications to stop the vomiting.
At that time, Andrea was only in the 3rd percentile for weight. She was tiny. Diabetes was ruled out. Her low blood sugar was blamed on the fact that she had no fat stores. When she got sick, her body had no resources to keep her sugar up.
Fast Forward Six Months
Six months after Andrea’s two-day hospital stay, Jennie was diagnosed with celiac. Jennie, however, wasn’t the only one. Her sister and her mom were diagnosed in the same month! All in the family indeed! (Read about her sister here.)
Through the process of transitioning to gluten free, Jennie learned more about celiac disease. The hereditary factor started to become clearer to her and she wondered who would be next in the family to be diagnosed.
At the same time, she was starting to worry about the upcoming winter. She worried about Andrea, two and a half years old, and still much smaller than her twin sister.
Reflecting on Andrea's First Years
Although she was bigger at birth, by two ounces, Andrea quickly started falling behind her twin. When she turned two weeks, they started to supplement her breast feedings with high-calorie formula.
“When she began walking we thought we knew why she was so small,” Jennie said. “She never sat still.” Mom said she was always moving, “even in her sleep.” They thought she burned the calories off quicker than she could add the weight.
Potty Training offered more insight. “When she was in diapers it wasn’t as noticeable, but once she was potty trained it was clear that she pooped a lot and it was loose,” mom shared. “She never complained of discomfort or pain.”
Food Behaviors: “She would take a bite and chew it and then mash it to the roof of her mouth and suck on it for a while,” Jennie said. “She still would eat her food, but it would take soooo long.” Even though she ate the same amount of food as her twin sister, Andrea was not gaining weight.
“She also just looked malnourished,” with her round belly and skinny little arms and legs.
Another Celiac in the Family
With Jennie’s increasing understanding of celiac, she requested that Andrea be tested. She tested positive for celiac at age three and a half.
They opted not to do the biopsy, however. With Jennie, her mom and her sister all being recently diagnosed, Jennie felt the biopsy unnecessary. Her gastroenterologist and pediatrician agreed.
Eating Gluten Free
Jennie says that eating gluten free can still be a challenge, “but I am doing better than I expected in the first days. It can be annoying, challenging, and frustrating, but it’s doable.”
As for her daughter, she was on board from day one. “I was going to give her a little time to eat gluten and start GF on Monday,” Jennie said, “but she was so into it we jumped right to it.”
As a family of six, they choose to maintain a shared home. “We cook mostly GF but we have gluten snacks for my other 3 kids. When we make frozen pizza we do one of each, and we keep regular bread too. It works for us, so we go with it cause GF stuff is pricey.”
As the household cook, Jennie makes all family meals gluten free. They keep snacks, breads, frozen meals, and some other items in the house, that are not gluten free, for their non-celiac family members.
“Our levels have improved and we don’t appear to have issues with this system, so this is what works for our family for now,” Jennie shared.
They don’t, however, keep any regular flour in the house. All baked goods are gluten free.
*(Personal opinion: I love Jennie’s decision to not have any regular flour in the house. While other items can be managed with appropriate care, that flour can easily spread into cabinets and drawers and beyond. Cross contamination is far more likely.)
Jennie took a cake decorating class so she could provide a special birthday cake for each of her children on their special days. With all cakes gluten free, all family members could share and enjoy each celebration together. (I LOVE this!!)
Jennie said she still struggles with anemia a bit, “but I’m close to normal,” she added.
Andrea is doing great. She no longer sucks her food, “and she poops like a regular person!,” Jennie said. (Yup, poop is a big deal!)
Mom also shared that Andrea has finally gained weight. “She hit the double digit percentile in the first 6 months!” She gained a total of 7 pounds during the year before she turned six, making her only 2 pounds less than her twin sister.
Jennie is happy to report that Andrea “just appears healthier, less scrawny.”
She also said, “I don’t worry about the average stomach bug being life threatening.”
Some Gluten Free Frustrations
Andrea is a great role model for her mom. If there is something she can’t have, they find something she can have, and she usually just lets it all “roll off her back,” mom shared.
There are times, however, when the emotions surface, (and rightfully so). Seeing her siblings receive a free cookie at the grocery store, when she cannot have the same, can result in tears and tantrums. And honestly, Andrea, it probably isn’t much different than the way many adults would like to express their disappointment. Being unable to share in special treats has many of us wanting to stop our feet at times.
Eating out can also get frustrating for their family due to limited gluten-free/child-friendly options. Mom shared that she’d like to see safe options besides grilled chicken for her daughter.
The Gift of Gluten Free
Andrea’s special dietary needs offered two special examples of amazing kindness and personal growth.
When the twins were in Kindergarten, mom and dad decided to keep the girls in the same classroom. Andrea was on the shy side. Her sister was her “Gluten Police,” speaking up for her so she wouldn’t be left out.
Midway through the year, a classmate was diagnosed with a gluten sensitivity. He was put next to Andrea so she could help him. And she did. Mom was so proud of her daughter for being such a great example and friend to her classmate.
Yes, this diet can be frustrating sometimes, but there can be so much beauty to be found through it all. I love when kids are there for each other, when they offer their heart and their hand. Kindness. We need to recognize the beauty above all else.