Describe your life prior to diagnosis:
For a year and a half I had been exhausted, nauseous, and unable to get pregnant. My brain was foggy and my body wasn’t able to regulate my temperature, and I was losing weight that I didn’t have to lose. I had to work from home a lot, and I knew there was something going on.
A year into my fertility journey, after a lot of bloodwork and tests on both my partner and I, we decided to try some fertility medicine. We ended up pregnant, but miscarried at 5 weeks. We were then sent to a fertility doctor, but they just wanted to get us pregnant again and not get to the root cause of why I was feeling so sick. So we changed fertility doctors to someone that would listen and care. This new doctor ran many tests, including MRIs for brain tumors. She then sent us to an endocrinologist, who ordered the blood test that revealed celiac disease.
This process was exhausting. There were so many appointments, so many doctors that wanted it to be a hormonal issue because of the timing, and even a few doctors that brushed it off completely.
How did you come to know (or suspect) that you have celiac disease?
I had zero idea before I got my test results back. Any gastrointestinal issues I had were so low on my list of symptoms that it didn’t occur to me that all of it could be caused by food. I just knew I was sick and my issues seemed cyclical with my cycle.
If you were diagnosed, who made the diagnosis?
An endocrinologist pulled the celiac panel along with a lot of other blood tests. When I met with her initially she didn’t even mention celiac disease as one of the tests she would order, so when the bloodwork came back positive for celiac disease, I was shocked!
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 a year and a half from my first symptoms to get diagnosed, and this was with me pushing my doctors to try to figure out what was wrong. During this time I felt like my life was on hold, never knowing when I would have a flare-up bad enough that I would have to stay home. I barely saw my husband because I was either at work or sleeping, and when I did see him I felt like I was only there physically, not mentally.
Because we thought it was hormonal, it was hard to get some doctors to take me seriously and hard to communicate how badly I was feeling. I realized very early on that you have to be your own advocate. I knew I was asking a fertility doctor to not immediately get me pregnant again, but I wanted to know what was wrong with me so that I did not continue to have miscarriages.
Do you believe anything could have sped up your diagnosis?
Yes: if doctors didn’t have blinders on; if they didn’t ignore the GI symptoms just because they weren’t the top symptom; if I was referred to an endocrinologist sooner, and not over a year into the process of feeling sick.
Describe your experience living with celiac disease:
I feel like myself again!
That said, I know some people don’t understand how serious the issue is. For example, my friend wanted to go to a rolled ice cream shop, but when I explained the cross-contact risk he had a hard time believing it could make a difference. But with COVID-19 happening I have not been eating out much, so I have not had to deal with this issue too often yet. My biggest issue right now is not beating myself up if I do something wrong and expose myself to gluten.
