Describe your life prior to diagnosis.
My life prior to my diagnosis was a life of uncertainty and instability. I saw several different providers over the course of 15 years. At age 16 I was diagnosed with irritable bowel syndrome (IBS), and then IBS-C at 23. I requested celiac panels several times and was denied them because the doctors didn’t think my symptoms “fit” with celiac disease, and wrote it off as IBS flare-ups.
How did you find out that you had celiac disease? Did you suspect it beforehand?
I became suspicious of a gluten intolerance as a young teenager when I saw a holistic practitioner. However, there were not many options for testing available to me at the time, so I lived partially on a gluten diet, partially not.
When the doctors presumed my issues were not gluten related, I became vegan. A plant-based diet helped for several years, until 2022, when it was the worst it had ever been. My doctors thought it was IBS, sent me to a breast cancer center, and thought it could be due to my plant-based diet.
After a run of lab panels were done in 2022, they found my AST levels* were slightly raised. The doctor presumed medication or alcohol caused the elevated levels, but I rarely drank or took medication.
I did my research, requested another celiac panel and was told again: “not necessary.” I switched doctors again and finally found a doctor who listened.
*AST tests are often used to diagnose liver damage and liver disease.
If you were diagnosed, who made the diagnosis?
My new gastroenterologist ordered an EMA test* and a regular gluten panel. The regular gluten panel came back negative (I was refraining from eating gluten partially at the time) but the EMA came back positive. The EMA was repeated, and positive. One week later I had an endoscopy with biopsy, and celiac disease was confirmed.
*EMA blood tests can diagnose celiac disease, but they are much less commonly used than TTG blood tests. Some patients with celiac disease test negative on TTG but positive on EMA.
How long did it take for you to get diagnosed since your first symptoms and what (if any) challenges did you face along the way?
It took me over 15 years to receive a diagnosis. I experienced everything from extreme fatigue, vomiting, and weight loss to muscle weakness and constant bowel movements daily. I had cramping to the point where I couldn’t stand, and wasn’t able to do activities I loved, such as running, without discomfort and severe dehydration for days. Being a new mom as well, living in discomfort while taking care of an infant was extremely difficult.
Do you believe anything could have sped up your diagnosis? If so, please explain:
Yes. I believe if I was given an EMA test, or even the option to remain on gluten for some time and take a standard test for an accurate result, this could have been solved so much earlier. If I was offered an endoscopy instead of just colonoscopies, that also could have helped.
Describe your experience living with celiac disease:
It has been a rollercoaster—some days are better than others. Knowing that I have celiac disease gives me peace of mind in being able to somewhat control my symptoms. However, it is difficult in the aspect that I can’t just go out to dinner with my husband, friends or family, or have my husband pick up takeout due to the lack of celiac-friendly restaurants.
What would a cure mean for you?
A cure would mean a decreased severity of side effects when exposed to gluten, or, for instance, being able to order a gluten-free dish at a restaurant and not have to worry about cross-contact affecting me.
Is there anything else you’d like to add to your story?
Celiac disease is real. We rely so much on medical providers to take our health seriously, and when we are told “no,” we can believe it or be discouraged. Don’t give up the fight—your life depends on it, mine did.
