Celiac disease not only impacts a person’s diet, says writer Erica Dermer — it can also impact their psychological well-being.
Author, “Celiac and the Beast”
Erica Dermer is a blogger and author of the book “Celiac and the Beast,” in which she chronicles her lifelong struggle with celiac disease. Even receiving her diagnosis was a difficult saga.
“A celiac diagnosis is not very common when it comes to the way that you’re supposed to be appropriately diagnosed,” she says. “You’re supposed to be on a gluten diet. You’re supposed to go to a GI to do the blood test. Then, assuming it comes back positive, you’ll have an upper endoscopy and biopsy, all while still eating gluten. After you get the diagnosis, then you’re supposed to go gluten-free. You actually have to show the intestinal damage in order to be fully diagnosed with celiac disease.”
That was not Dermer’s experience. After a doctor told her to just quit gluten without the screening, she was misdiagnosed with gastroparesis and was told she would need a gastro pacemaker. “I went and got a second opinion at the Mayo Clinic, which is very strict about their diagnosis, and I had to go on a gluten containing diet.” After a few weeks, during which Dermer developed mouth ulcers and her digestion slowed, she received a proper diagnosis of celiac disease, which was causing a number of other digestive problems. “It was kind of a missing puzzle piece,” she says.
People often think a celiac diagnosis is only a matter of changing your diet, but Dermer’s blog outlines how life-changing the diagnosis has been. “It is a true psychological change, where you are oftentimes hyper-vigilant. You get over-excited and overstressed about everything to where you’re just like, ‘I’m just not going to eat out today or I’m not going to go out to a party.’”
That is why Dermer became an advocate, to speak to others that were experiencing the psychological stress of celiac disease.
“I just wanted to help people avoid that stress in the future,” she says. “I think the biggest thing I learned from other people with celiac disease is they didn’t understand that other people are dealing with the same exact thing. I think it’s something online communities can really help us better understand — someone is going through the exact same challenges that you are. You don’t have to face it alone.”