Self-Advocating: From Diagnosis to Living with Celiac Disease

Published May, 2021

Each step of your celiac disease journey comes with different sets of challenges – not just physical, but emotional ones as well. One part of living with celiac disease or a non-celiac gluten sensitivity (NCGS) is standing up, or advocating, for yourself.  

Standing up for yourself takes many different forms. Being your own advocate can be a major part of dealing with healthcare providers. You may find you also have to self-advocate when interacting with family and friends, or any time you’re in any situation where food is being served. 

How can you successfully self-advocate? We connected with several people living with celiac disease who shared their thoughts on self-advocacy. 

Trust Your Gut

Only the person with celiac disease or NCGS knows what it feels like – and it can feel different for every person. If you’re the one with the gluten issue, you know when something is wrong.  

Standing up for yourself with your healthcare provider can be intimidating, but it is important to stand your ground and continue to communicate what you’re experiencing. Kelli from Ohio, 28, said she was struggling with a variety of health issues, severe bloating in particular, and was not getting diagnosed properly. 

“I saw a primary care doctor who said I needed to take a prescription without even giving me an exam,” Kelli recalls. “I ended up switching doctors, and he was shocked at the meds my primary care doctor suggested. We did numerous rounds of bloodwork, exams, and tests. I saw a GI specialist who, without doing an in-person exam, suggested a colonoscopy which my insurance didn’t cover. I saw yet another doctor who did more exams and bloodwork and gave me the celiac diagnosis, then suggested the GI specialist confirm it with an EGD.” Kelli underwent the upper endoscopy. 

Kelli says it took almost a full year, and thousands of dollars on medical bills, before she was properly diagnosed. 

“I’m happy I was an advocate for myself since I knew something wasn’t right,” Kelli explains, adding, “I’d say always trust your gut, literally and figuratively, when something seems off. You know your body best so always trust that.” 

Find a Doctor Who’ll Listen

Communication issues with healthcare providers, along with over 200 symptoms that could signal celiac disease or NCGS, can lead to a misdiagnosis or living with untreated celiac disease for a long period of time. Kelli was lucky to find a doctor who did a more thorough examination and tested her for celiac disease to get a diagnosis.  

Cara, 20, says that after she turned 19 and could no longer see her pediatrician, she was bouncing around between providers for five years without a diagnosis. 

“My symptoms of acid reflux and migraines were said to be stress-induced and caused by the college life-style,” says Cara, who lives in Pennsylvania. “Once I graduated, I started consistently seeing a physician who ordered the testing that discovered my celiac disease. I have been gluten free for nine months now, and I cannot thank that doctor enough for investigating my symptoms.” 

Finding a healthcare provider who will take time to hear what you’re experiencing and not dismiss your symptoms, especially when you have a family history of auto-immune diseases, is one key to getting a proper diagnosis. Sometimes, self-advocating with a healthcare provider is saying, “I seem to have some of the markers for celiac disease. Could I get tested?” Sometimes self-advocating is saying to yourself, “This provider is not hearing me or helping me,” and finding someone else who will. 

Don’t Take it Personally

As you transition to living gluten-free to stop symptoms and potential damage gluten can cause, your day-to-day interactions can be stressful. Many people aren’t familiar with gluten issues. Some may think going gluten-free is a fad. One thing to always remind yourself, particularly when faced with doubt or pushback from others, is that your health is important, and your requests for food information and food safety are critical to your health. 

“I do not take it personally when someone does not understand what ‘gluten-free’ means or forgets that I cannot eat and drink anything with gluten,” says Cara. “I understand that there are so many medical conditions that I do not know about or forget that people have, so it is unrealistic to expect others, like co-workers and extended family, to completely understand and remember my condition.”  

Cara sees those times where she needs to inform or remind another person that she is gluten-free as an opportunity to educate. 

Marie from Oregon, 43, also isn’t bothered if someone doesn’t know anything about celiac disease or gluten sensitivities. What bothers her is when someone else says they have celiac disease or a gluten sensitivity but “risk” having something – like cake – that is not gluten free. 

“The people around them expect that I can be the same way,” she says. “No, I can’t have even a tiny bit of something with gluten. It will not only make me sick right now, but I know it can cause other possible damage. Just because a friend is willing to suffer for that piece of cake does not mean I am.”  

Kelli acknowledges it isn’t just other people who have a learning curve.  

“While it’s important to give others grace as they might not understand what celiac disease is. it’s incredibly important to give yourself grace as you figure out your new normal.” 

Keep Your Support Network Close

What else can you do to minimize the stress of self-advocating? Keep your support network close, particularly when you need to vent. Self-advocating can be frustrating when you feel like you aren’t being heard or when you feel unsupported. Whether it is a family member, a trusted friend, a healthcare provider or a support group, setting up connections with others who can be a sounding board or point you to helpful resources is an effective way to reduce the stress of self-advocating. Check out GIG’s Support Groups to find one near you. 

Self-advocating means taking charge of your health. You’ve got the power to pursue a proper diagnosis and make the necessary changes to lead a healthier life. Remember: You don’t have to go on your gluten-free journey alone. 

If you know someone with celiac disease or NCGS, learn how you can be part of their support network: “Supporting and Encouraging a Loved One with Celiac Disease.” 

Disclaimer: The information on this website is for educational purposes only. Consult your healthcare team when considering this information.  

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