Celiac-aversary

Shortly after moving to Cambridge, MA I worked as a nanny for a family that lived in Harvard Business School Housing. Laura, the mother of the family, became one of my dearest friends. We developed an incredibly comfortable relationship—a relationship where talking about deeply meaningful things and talking about our bowel movements both felt totally normal.

It was Laura who put the bug in my ear about Celiac Disease. She had been diagnosed five years earlier and was intimately familiar with the problems that precede diagnosis. When I told her about my episodic diarrhea, vomiting, fatigue, random dislike of food, etc., she completely understood. She also became convinced that I had Celiac Disease. Every time we spoke she told me to get tested. While I appreciated her concern, I deliberately chose to not think about the possibility of my being “diseased” outside of her home. I hardly mentioned it to Brandon. I did not want Celiac Disease. I did not want to go to the doctor and I did not want to be gluten free for the rest of my life. Donuts were a major food group to me.

I think that the reason I was most closed to the idea of being tested is because I didn’t believe that I was sick enough (or sick regularly enough) to have Celiac Disease. My stomach has always been somewhat sensitive. I was diagnosed with IBS in seventh grade and assumed that my occasional nausea and regular diarrhea were normal. Sometimes I would go a month without feeling sick. 

In January of 2014 (during a stressful J-Term class) I changed my mind. My usual stomach problems intensified, and my hair started to fall out by the handful, I lost a lot of weight, and I had all the symptoms of gastric ulcers. After a little more research about Celiac Disease, I made an appointment to see a specialist.

I met with a gastroenterologist at Brigham and Women’s hospital for the first time on February 13, 2014. My lab results confirmed Celiac Disease, indicated low nutrient levels and flagged a problem with my thyroid. Consequently, I met with an endocrinologist did more blood work. He confirmed that I had Hashimotos Thyroiditis. 

In short, Celiac Disease and Hashimotos Thyroiditis are both autoimmune diseases. When I ingest gluten, my intestines essentially begin to collapse. And with no particular prompting, my thyroid is dissintigrating. In the next decade or so, I won’t have one left at all. 

As the next few months went along, I became more sick, which was not what either doctor had anticipated. I had gallons more blood work done, an MRI, and hydrogen breath tests in addition to my scheduled monitoring. A (*false) reading of my MRI indicated that I had leukemia. That only lasted a few hours. From the MRI, technicians also discovered that I had ovarian cysts. The hydrogen breath tests showed that I had bacterial overgrowth in my intestines.

(on a pick-me-up weekend trip to New York City in March) 

The months that followed my diagnosis were difficult to say the least. It was particularly hard to decide to stay in school when my doctors suggested hospitalization, but Brandon and I felt like it was the right thing to do. As a result, I had to spend a lot more time in going to and from appointments. In addition to meeting with my regular physicians, I had “counseling sessions” with a dietitian on a regular basis to help me learn how to eat gluten free and how to get my nutrient levels back to normal. Because I had to do rounds of antibiotics and steroids for the bacterial overgrowth in my intestines, my dietitian helped me begin a special (and temporary) diet to ensure that my stomach “bounced back.” Perhaps my most disruptive change was adjusting to thyroid medication. The first few  months of taking the pills basically intensify the symptoms of Hashimotos. It is awful. Every time I have to up my dosage (which happens regularly) or change the brand of my medication (which has only happened once) the adjustment starts all over again. I have never been pregnant, but some women compare it to the first trimester of pregnancy.  

Even though January-July of 2014 was filled with intense pain and inconvenience, I do not feel like I endured physical trauma on the scale that so many other brave women and men do every day. I consider myself very lucky. The experience of having health problems was transformative in a way that no other problem for me has been before. Instead of going through something that impacted my perspective, my journey to better health radically changed by procedures. This battle was so unavoidably outward. I couldn’t just deal with the problem in my head or in conversation with a loved one. I was sick and everyone knew it. (Or at least that is what it felt like). I have to tell waiters about my diet, and often need to leave restaurants. I can’t eat whatever people bring me or eat whatever people have in their homes. My diagnoses aren’t just an inconvenience to me—they impact everyone around me.

For the first few months, I remember feeling overwhelmed with that. I like being self sufficient. As the dust settled though, I realized one of the most valuable reminders that came from my diagnoses was there is so much beauty in depending on and serving other people. Everybody has problems, struggles and needs somebody to talk to about them. People want to help! I was never so pleasantly surprised as when someone from my father’s work, my friend’s step-sister, a friend of a cousin, and other random acquaintances came out of the wood works to tell me they knew someone with Celiac or Hashimotos Diseases and that everything would be okay.

They were completely right. I just passed my Celiac-aversary and feel healthier than ever.

One day, I’ll write a fuller version of my road to diagnosis. It includes dining and dashing (to the bathroom), sassy conversations with my phlebotomists, frozen peas and lots of guacamole.

Until then! xo