May is Celiac awareness month. I thought I would take a few days this week to share my story about being diagnosed with Celiac and living gluten free. Since Celiac can be genetic, we are keep Bradley gluten free too which brings in a new set of challenges.
Celiac disease is an autoimmune disorder triggered by the ingestion of gluten, a protein found in wheat, barley and rye. An estimated 1 in 141 Americans has celiac disease, yet 83% of those who have it are either undiagnosed or misdiagnosed. (from the National Foundation for Celiac awareness).
It makes your body unable to properly absorb nutrients.
I found out that I had Celiac in the fall of 2007. My mom had been insisting that something just wasn’t right since the end of the summer, but I brushed it off as me recovering from an entire summer of not sleeping (I had been a PASSPORT youth camp counselor all summer). That fall I was doing a placement teaching middle school as part of my graduate school program. I started getting excruciating migraines and, although I was painfully exhausted, I couldn’t sleep at night. Middle school + migraines = unbearable. I finally gave in that something was wrong.
I went to a whole health specialist. Within a few minutes of talking to me, she was fairly certain she knew what I had. Some medical tests later, it was confirmed that I have Celiac.
I felt like my world was turned around. 90% of my diet (no joke) was pasta and bread. What was I going to eat? I was discouraged and realized that trying to start eating gluten free during the holidays was a ridiculous idea so I waited until the new year. I cut out all gluten focusing my meals on produce, meats, dairy, and rice. And then something amazing happened. I felt like a new person. I had been sick so long, I didn’t know what it was to be well. I thought how I was feeling was normal because I didn’t know anything else. Once I became healthy, I couldn’t believe that I dealt with being sick for so long. In hindsight, the symptoms are obvious. So how did my doctors miss it for so many years?
Here are what I think are the contributing factors to missing my diagnosis:
- Discontinuity of care. Sporadic visits to the pediatrician, then leaving for college and even more sporadic visits to a general physician then moving again for graduate school.
- Being an non-advocate I didn’t know what it was to feel healthy, so I couldn’t advocate for myself that I was sick.
- Atypical symptoms. Really my symptoms aren’t atypical at all they just didn’t include what used to be considered the most prevalent symptom. I didn’t have any of the nausea or IBS typically associated with Celiac. Now people are becoming more educated about Celiac and they are realizing not to over look diagnosing those without those “classic symptoms”. Here is a great graphic that displays now what are being recognized as some of the most common symptoms which could be present in any combination.
- Treating the symptoms. Our healthcare culture is too quick to treat the symptoms. Growing up, I would occasionally faint but was told that I would out grow it when I “put some meat on my bones”. I got used to having headaches most days but if they were too painful some Advil would help. My depression in high school was medicated. My low iron was attributed to diet.
By individually treating all the symptoms, the cause was missed. All of the above can be attributed to Celiac in addition to things that I didn’t even know were wrong until I was healthy like: chronically achy joints, anxiety attacks, extreme fatigue
Going gluten free has changed my life. While it does make logistics more difficult, it is a small price to pay for a transformation in my health.
This week I will share some of my tips for eating gluten free both at home and out.