going gluten-free: my celiac story

When I was in high school, I got really sick. I was so active, I had just finished my first ride with the Pan Mass Challenge and was working out 6-7 days a week. But when I got sick, I had to stop. So sick, I was back and forth to the doctor almost every day for a couple weeks - until I finally got an answer… I had mono. No matter what, mono is a miserable sickness to have. You have to put your life on hold for a couple weeks - or months - and as a junior in high school, this was hard to do. I had a note excusing me from class, that let me wander into school freely and leave when I wanted.

Days turned into weeks, and weeks turned to months, and I wasn’t getting better. I could sleep all day, I had no energy, and as someone who had just weeks ago been in the gym every single day, some days I couldn’t even get out of bed. I kept going back to the doctor, and I kept getting the same answer: “you have a post-viral syndrome.” I was told that sometimes, people have a much harder time recovering from mono (a “post-viral syndrome”) - and I had one of those cases. Half the time, I couldn’t even go to school.

After a month of accepting this answer, with no healing in sight, I finally said, “I think I have lupus.” My doctor said, “You don’t have lupus. But I’ll add it to your labs.”

The lab came back positive, and I was referred to a rheumatologist at Mass General Hospital where I underwent test after test, after test, after test.... and I didn’t have lupus. But, it was very clear from my labs that there was an autoimmune reaction in my body, but I didn’t have symptoms specific enough to diagnose one autoimmune disease over another. Anyone who has dealt with an autoimmune disease, knows that they are nearly impossible to diagnose and you must meet a very specific set of criteria.

So I went back to Mass General, to the same rheumatologist, and to other specialists, just wanting an answer. I didn’t get one. 

I had crazy medical episodes, one so bad that put me in an ambulance being rushed to the emergency room. I had pain so bad it hurt to roll over in bed. My body, was in distress. I was put in physical therapy, which helped me to regain some of my stamina and energy (finally!). But, my body was still in distress. I was still waiting for an answer, knowing there was something. I was never able to get back in the gym the way I once had been able to. 

I became vegan, and my body felt better , for the first time in a long time. I ate so many healthy, raw foods, and I wasn’t eating much gluten. I noticed that I felt great, but when I went out to eat and on the rare occasion ordered pasta or a sandwich, my body was so angry. I would be fine, then by the end of the meal I would be withering in pain and distress. I would need to lie down, and my entire day would be over after eating gluten.

I kept seeing my rheumatologist yearly, and that year I walked in and told him, “I feel great, except when I eat certain foods.” He responded, “yeah… gluten? I was just looking back at your information, why haven’t we tested you for celiac disease?”

He ran the labs, and they were positive. I was referred to a gastroenterologist at Mass General, and the rest is history.

After nearly 5 years of pain, fatigue, and wanting my life, my energy back, I had it. An answer means the world, and a gluten-free diet is well worth it.

I am so thankful to my family, my friends, and my doctors for being next to me, supporting me, and believing me. There are far too many people who aren’t believed when it comes to autoimmune diseases, because you can’t see it. Celiac disease has over 200 known symptoms - we are not making it up.