How I Knew I Had Celiac Disease: When a Diagnosis Inspires Advocacy
Key takeaways:
Margaret Clegg’s celiac symptoms started in her teenage years.
But she didn’t know what was causing her fatigue, joint pain, mouth sores, headaches, and constipation.
After she was diagnosed, she became passionate about celiac disease awareness.
When Margaret Clegg was first diagnosed with celiac disease in her 20s, everything started to make sense. Symptoms she remembers growing up with seemed to have an answer now — like her exhaustion in high school.
Maybe that was more than teenage lethargy. Maybe it was because of celiac-related anemia.
As she got older, Margaret developed more classic symptoms of celiac disease: constipation, headaches, joint pain, and mouth sores.
She lived for years without knowing her body was intolerant to gluten, a protein found in the grains of wheat, barley, and rye. When she ate things like bread and pasta, she'd have stomach problems or other aches and pains.
“Once I was diagnosed, I was like, ‘Oh, that explains all the symptoms I’ve had,’” says Margaret, who's now 43 and lives in Flint, Michigan.
Getting a proper diagnosis
Margaret’s path to getting a diagnosis, though, was more like a saga.
The year before she received a diagnosis, she had a series of panic attacks. At the time, she was earning her teaching degree and working 20 hours a week. She felt tired but thought it was because she was busy.
The next time Margaret saw her primary care provider, she was extremely pale. So the physician assistant ran tests.
“When my iron came back, she’s like, ‘This is so low you shouldn’t even be able to walk right now,’” Margaret recalls. She then got a referral for a hematologist. That doctor treated her anemia with iron injections. He also referred her to a gastroenterologist.
Finally, in 2001, Margaret got a diagnosis of celiac disease. It explained a lot.
“You wouldn’t think joint pain would be related to your constipation at all, but it is,” she says. “It’s a huge malabsorption issue.”
A family history of celiac disease
Celiac disease affects roughly 1 in 100 people and is more common for people who have an immediate family member with it.
After her diagnosis, Margaret learned it ran in her family. Her grandmother and father both had it. But they never talked about it or followed a gluten-free diet, she says. At first, learning this made Margaret frustrated. She wanted to know why they didn't have her tested. She did some of her own research. She found that scientists are learning even more about celiac disease.
As a young adult, Margaret didn’t always have support to find the kind of foods she could tolerate. Her boyfriend at the time would tell her: “It's all in your head,” she recalls.
Finding the right support
Today, Margaret has surrounded herself with people who are sympathetic and supportive.
She decided to take her body’s needs more seriously. An NBC Today show segment she was watching one day stuck with her. It featured a story about a woman with celiac disease. It mentioned a link between celiac disease and infertility.
Having a family was important to Margaret. She realized she needed to take better care of herself to stay as healthy as possible. So she started with changing her diet.
Going gluten-free was expensive
While Margaret had insurance to cover most of her medical costs, grocery shopping was another story. Gluten-free foods can cost roughly 2 to 3 times more than foods that contain gluten.
“It’s hard if you don’t have the money,” she says. “It’s hard if you don’t have the support. It’s hard if you don’t know how to cook. It’s hard when there’s misleading information on the internet and you don’t know who to trust.”
Margaret says she’s careful about where she turns for health information. When she wants to find out what people in the celiac community are facing, she goes to support forums. But even there, she encourages people to look for science-based research. She’s now preparing a presentation for one support group on how to find reliable, research-backed information.
“In this world of social media influencers and TikTok experts, who are you listening to? What are their credentials? Where do you get your information from?” she says. “If it sounds too good to be true, it probably is.”
Too many people undiagnosed
Margaret worries that too many people go undiagnosed with celiac disease. It’s estimated that up to 83% of Americans with celiac disease go undiagnosed or misdiagnosed. So, Margaret urges people to get tested.
Margaret also works with some support groups that are looking into what more they can do to help underserved populations who may have barriers to healthcare.
Margaret raises awareness by blogging about her condition as well. She lets people know it can be tough. Celiac disease can leave people susceptible to other autoimmune diseases. Recently, Margaret found out she has Hashimoto’s disease, an autoimmune disorder that affects the thyroid.
Up until recently, she helped run a camp for kids with celiac disease. And she says she wants people to know that “it’s hard, but it does get better.”
One positive thing, she says, is that her diet is her biggest hurdle.
“As frustrating as it is having to eat gluten-free, that’s the only thing we have to do is change our diet,” she says. “We don’t have to take a pill. We don’t have to take any shots. We don’t need to have chemo or radiation. We are in control of our own health change.”
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