Describe your life prior to diagnosis:
The best way I can describe it is that one day I was fine and the next day I was extremely sick and didn’t get better. It came out of nowhere for me. Over the course of six months my health rapidly declined.
It started with being unable to swallow, which led me to start on a soft food diet. Then came chest pains with difficulty breathing. My brain felt non-functional. I would run into walls and cabinets, jumble words together, be unable to remember basic details, and get vertigo just trying to walk through a store. I didn’t even feel like myself anymore. On top of that I was still having swallowing issues and had lost 25 pounds. I did experience extreme upper abdomen pain with nausea every day, but not the usual GI symptoms I hear about with celiac disease.
The last symptom I developed was nerve pain. My skin felt like it was on fire, to the point where it was hard to shower because it hurt so bad. All in all, my body felt like it was failing me in every aspect, and each night I went to sleep truly believing I would never get better.
By the time I got diagnosed I truly thought my life was over. Thinking back on it is still emotionally taxing.
How did you come to know (or suspect) that you have celiac disease?
I never suspected celiac disease, it wasn’t even on my radar. I had a different diagnosis originally, and had to have a second endoscopy to follow up on that. Afterward the doctor said that everything had cleared up, and I vividly remember being so upset, not understanding how things could have cleared up because I felt even worse than before.
A week later I got a call and was told that my biopsy was indicative of celiac disease. I was shocked to say the least.
If you were diagnosed, who made the diagnosis?
My gastroenterologist, who did my second scope. He is one of two GI doctors listed for celiac disease care in my area, so I feel lucky that he even checked for it.
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?
One could say I’m lucky, because the onset of my symptoms started in February and I got my diagnosis in June of that same year.
Unfortunately I was in denial after my diagnosis, and did not start the gluten-free diet until August, when I realized I could not wait another day.
My biggest challenge along the way was having to cope with feeling so incredibly sick while people, even doctors, asked, “Are you sure it’s not in your head?”
Describe your experience living with celiac disease:
For me personally, it’s been hard. I don’t sugarcoat it, it has changed my life in ways I can’t even explain. It’s been two years since my diagnosis and I still go back and forth through the stages of grief. Life isn’t the same for me, and it never will be, and that is incredibly hard to cope with. I still get sick easily, even when I’m incredibly cautious.
I can say that I am thankful that there are many more gluten-free options now. The gluten-free diet already feels so limiting, so without these current options it would be even harder.
Is there anything else you’d like to add to your story?
One thing I wish I knew when I was diagnosed is that it can take a long time before you feel like yourself again, or even to feel slightly better. And that you can feel worse before you begin to feel better.
After being on the gluten-free diet for four months, I ended up in denial again because I still felt so sick and I could not put weight on. This caused me to spend a lot of money seeking out non-traditional avenues of medicine, as I thought there must be something else wrong, given how sick I was. Come to find out, it just took my body longer to adjust and to feel better again.
