10 Things I Wish People Knew About Celiac Disease
Key takeaways:
Jenny Levine Finke used to love eating things like pizza, pasta, and bread.
But, when she was diagnosed with celiac disease, she realized those kinds of foods would harm her long-term health.
She’s learned to navigate grocery shopping and choose meals wisely to keep her health in check.
Jenny Levine Finke didn’t see celiac disease coming.
Ten years ago, when she was 34, the blogger and author of “Dear Gluten, It’s Not Me, It’s You” asked her doctor to recommend a treatment for the severe bloating and gas she was experiencing. Although she’s not a large person, she would develop a large, bloated belly throughout the day, she says.
The doctor said that what she was describing did not seem normal and ran several tests.
Jenny remembers getting the news that she had celiac disease. That was followed by the news that she would need to stop eating pizza, pasta and bread — “my three favorite food groups,” she says, jokingly.
She remembers the phone call clearly: “I was literally eating a sub sandwich at the time.”
Her first thought was, “Do I have to stop eating gluten right now? What IS gluten?” she says. “I didn’t really know.”
But she knew that the sandwich suddenly seemed like poison, and she threw it in the trash.
Celiac disease is a chronic digestive and immune disorder that damages the small intestine. The disease is triggered by eating foods containing gluten. It can cause long-lasting digestive problems and keep the body from getting enough nutrients.
It affects about 2 million people in the U.S. and about 1% of people around the world.
Jenny describes her initial reaction as feeling very sad. She says she “compares breaking up with gluten to breaking up with someone you really love.”
“There’s a physical reaction you have to the breakup; it’s a lot of change in your life. But there’s the under-talked-about emotional burden of the gluten diet. Because, it takes its toll on you. If you’re used to traveling and eating out a lot, you’re stopped in your tracks,” Jenny says.
Gluten is the protein found in grains. Gluten acts like a glue that helps foods keep their shape, and it’s what gives bread its chewy quality. But for a small part of the population, it is a bright-red flag.
Jenny, who lives outside of Denver, founded the website Good For You Gluten-Free to help others avoid stumbling like she did when she was first learning to live with celiac disease.
Here are 10 things she wants others to know about celiac disease.
1. There’s no cure for celiac disease
It’s a lifelong disorder, and it’s managed through diet. “There’s no magic pill. It’s just the food at the end of the fork and you,” Jenny says.
2. Celiac disease is different from gluten intolerance
Many people who have celiac-like symptoms don’t have celiac disease but respond well to a gluten-free diet. Specialists say that these people — between 1% to 3% of the population — may have non-celiac gluten sensitivity (NCGS).
3. Gluten-free doesn’t mean safe for celiacs
Restaurants may advertise a gluten-free product, such as gluten-free pizza, but the food may not be safe for those with celiac disease. A gluten-free pizza cooked in an oven with other pizzas is not safe if you have celiac disease.
Similarly, a restaurant that uses the same fryer for french fries as it does for breaded chicken is not safe for celiacs. Restaurant websites may include disclaimers, but careful research is mandatory.
4. Some restaurants are certified gluten-free
But they are few and far between. Look for restaurants that have dedicated ovens and preparation areas for gluten-free foods, and where workers are trained to avoid cross-contamination through strategies like changing gloves. Then talk with restaurant management to confirm practices.
5. A gluten-free diet isn't necessarily healthier
The gluten-free diet isn't necessarily healthier than the standard American diet.
In particular, commercially prepared gluten-free products are highly processed and include excess sodium, sugar, and saturated fats, just as you'd find in regular, commercially prepared foods.
“Sugar is gluten-free, after all, but it doesn’t mean it’s good for you," Jenny says.
If you have celiac disease and/or NCGS, you still have to work hard to eat healthy and avoid processed foods.
"It’s wise to pay attention to food labels and choose whole foods that are naturally gluten-free, whenever possible," she adds. "This will limit your exposure to potential hidden sources of gluten and help you keep your diet, and health, on track."
6. Kids don’t necessarily inherit the celiac gene
In Jenny’s family, 1 of her 2 children has an abnormal gene linked to celiac disease. But that child has not developed celiac disease and may never.
7. Travel and restaurants are tough to navigate
For Jenny’s family, taking a trip now involves researching rental housing to make sure she’ll be able to prepare food, rather than depending on restaurant or hotel food. Locations need to be scouted for grocery stores with gluten-free options.
8. You will miss favorite foods
“Anyone who tells you they don’t miss foods is lying,” Jenny says. “I loved bread rolls and donuts and pasta. I do miss those foods.”
9. Kids can learn to accept substitutes
“My kids would love to have the cookie-dough ice cream,” Jenny says. “But they’re OK with chocolate chip. They’re not really missing out.”
10. A health coach can help
Jenny’s health coach helped her clean out her pantry, read labels at the grocery store, and learn to make some basic meals. “It was good to have some trusted support,” she says.
Jenny says making the home entirely gluten-free is helpful, even if just one family member has celiac disease.
When she started her journey, she had a dedicated area of the family pantry for gluten-free foods and was still making regular meals for the rest of the family. But her husband and kids recognized that was isolating and offered to change, she says.
The whole family committed to a gluten-free household 6 years ago.
She says she feels lucky her husband and kids are so supportive.
“They don’t want to go into a restaurant unless they know mom can eat,” she says.
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