Describe your life prior to diagnosis:
As a child I often had painful stomach aches and migraines. The stomach aches stopped around grade 5, but I continued to get headaches periodically. I never struggled to gain weight and didn’t display any other textbook celiac disease symptoms.
As an adult I would still get stomach aches at times or feel bloated, and I played around with a gluten-free diet without any real commitment, never pursuing an official diagnosis. When I attempted to donate blood I was usually turned away due to my low iron. I had always struggled with iron, but I thought that was just normal for me. In hindsight that was probably anemia caused by undiagnosed celiac disease.
I was blessed to easily conceive and have three healthy pregnancies. Post-pregnancies I just went about eating a typical diet. I did still have stomach aches and bloating, but assumed that was just indigestion and a sensitive stomach.
How did you come to know (or suspect) that you have celiac disease?
In 2020 my younger brother was diagnosed with colon cancer (he had long suffered from ulcerative colitis, as my older sister had with Crohn’s disease) and in late 2021 I began experiencing bouts of stomach pain, back pain, headaches and diarrhea much more frequently. It got to the point where I couldn’t go anywhere without being close to a washroom.
I approached my doctor with concerns about my family history and the possibility of IBS. She scheduled a colonoscopy and bloodwork. She gave me the option to test for celiac disease, too, and I figured, “May as well rule it out.”
Well, the day after I did my blood work, my doctor called to confirm I tested positive for celiac disease. After consulting a gastroenterologist (GI), she sent me for an endoscopy and biopsies, which further confirmed my diagnosis.
Due to my diagnosis, my doctor recommended I also have my children tested. I never suspected celiac disease in my children as they were not consistent with textbook symptoms; they were tall, they didn’t often complain of discomfort and I saw no alarming physical signs. However, two of my children received a celiac disease diagnosis and I’m so glad we know this now so we can hopefully prevent any future complications.
In hindsight, I can see some of their symptoms: occasional headaches and diarrhea, circles under their eyes, and my daughter was not absorbing iron. I’m so grateful we have this information now and that they have begun the process of healing. We are learning to adapt as a family.
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?
I had consistent symptoms in August of 2021, began the process of getting answers in October of 2021, and was diagnosed in December of 2021.
Do you believe anything could have sped up your diagnosis? If so, please explain:
No, I was very lucky to have been seen as quickly as I was and to receive answers as quickly as I did.
Describe your experience with living with celiac disease:
It’s an adjustment, but it’s about perspective. Is it more difficult to eat out? Sure. But my small intestine is healing and my body is beginning to absorb nutrients. I have more energy, the brain fog is lifting, my back pain is gone. I have my health, and sacrificing a few gluten goodies for the sake of my health is a tradeoff I’d make any day.
We have managed to find gluten-free replacements for almost everything. There are so many more options, and so much more awareness, today. Having celiac disease is also teaching my family how to advocate for themselves. I’m grateful my kids have a diagnosis at a young age so they will have the knowledge and tools to live a healthy life.
Is there anything else you’d like to add to your story?
Neither my kids nor I have obvious or strong, if any, reactions to gluten or cross contact, and I think this is why I never pursued a diagnosis in the past. I’m grateful for the healthcare professionals that sought answers and didn’t ignore my complaints, and I’m so grateful for the advocacy and awareness that exists now that will allow my family to thrive.
