My health journey has been long, with many ups and downs. I’m happy to say that while there is still a long way to go, I have made a lot of progress along the way and continue to improve.
I first remember experiencing digestive issues around age 12. My parents took me to multiple doctors, but they couldn’t find anything wrong. One doctor even suggested I be sent to a therapist because everything was in my head. We figured everything was fine and I went along with my life assuming everyone felt this bad all of the time. I saw a few more doctors throughout the years but never had any resolution. The summer after I graduated high school my stomach pains were getting worse and worse. My internet research led me to believe I had IBS and something was wrong after all! I found a doctor and when I finished telling her my symptoms, she was pretty sure I had Celiac Disease, because she had it as well! The day before I went off to college I got the news that my Celiac tests came back positive, and I was to immediately stop eating gluten. A few months later, I had an endoscopy to confirm my diagnosis.
Of course, this was in 2009 and going gluten free wasn’t popular yet, so I had no idea what gluten was. I did my research and quickly found out I would have to give up a lot of my favorite foods. After speaking with the staff of my dorm’s dining hall, I also realized that with cross contamination there was almost nothing that I could eat that was on my dining plan. Not knowing what to do and not knowing very much about nutrition, I made it through my first year of college surviving mainly on a lot of packaged gluten free convenience foods. I learned how to make eggs in the microwave and ate a lot of rotisserie chicken, microwave dinners (mostly mac and cheese that I had convinced the convenience store in my dorm to carry), instant rice, and mashed potatoes, but also ate an embarrassingly large amount of Fruity Pebbles and candy. Unsurprisingly, I still didn’t feel very well despite going gluten free.
Around this time I had started to research more into Celiac, because I wanted to know why I wasn’t feeling better and my Gastroenterologist had little advice for me. Now that I knew the effect that gluten had on my stomach, I was able to better understand how food could be negatively impacting my health. My research led me to find the Specific Carbohydrate Diet. The diet excluded all grains, sugar (except honey), starchy vegetables like potatoes and sweet potatoes, and required that I make my own 24-hour fermented yogurt to eat daily. I definitely saw improvement on the diet and stuck with it for 6 months, but having to cook every meal and make the yogurt in my shared apartment, and the fact that the diet allowed for zero “cheating” or eating meals out led me back to a more standard, grain-filled diet.
After a few months back eating almost whatever I wanted other than gluten (read: copious amounts of queso dip and chicken wings) I wasn’t feeling so well and finally found the Paleo diet, which excluded grains, dairy, sugar, and legumes and emphasized vegetables and well-sourced meat. Within a few days on Paleo my bloating subsided and my digestion improved, and I felt that I could use it as more of a template to figure out what did and didn’t work for me. Finally, I didn’t feel as confined within the diet. I have stuck to a Paleo template for about four years now and believe it has had a huge positive impact on my health.
Additional Health Problems
In the fall of 2010, my second year of college, I got Mono. I woke up with swollen lymph nodes all over my head with an incredibly sore throat. I felt like I’d been run over. I was terrified to see what the doctor would say, because with the lumps all over my head I assumed the worst. Mono impacts people in different ways, my best friend at the time also had it and had a bad sore throat for a few days, recovered within a week, and got back to partying. I, however, was down for a few months and never seemed to fully recover. A month into having mono, when I was beginning to get better, I got a kidney infection that landed me in the hospital for nearly a week. Since my immune system couldn’t fight the infection, I kept getting sicker while I was in the hospital. I continued receiving higher and higher doses of antibiotics and pain killers until I was finally released. I still wasn’t doing well when I went home, and one of my family members who is a Naturopath finally recommended D-Mannose to me, I firmly believe that this is what ultimately got me over the infection. This was my first glimpse into all that natural or functional medicine had to offer against the traditional medicine model.
Finally, I recovered and was able to make up my school work to finish out the classes I had taken incompletes in. I went right back to studying and working, but I had a lot more digestive issues, was constantly tired, and was constantly getting infections. No one could figure out why I was sick so often, and I had another endoscopy to look for the source of my digestive distress, but nothing was found, so I continued tweaking my diet and trying to work on things on my own.
About a year later, my leg went numb from the knee down for about a week. It was kind of like a reverse phantom limb. I was alarmed and saw multiple doctors, but no one could figure out what was happening. Finally, I was referred to an Immunologist. She found that my Vitamin D and B12 counts were low (likely due to my poor digestion) and also that my ANA count was slightly elevated. She put me on B12 shots, which seemed to help, and told me I might have to keep an eye out for Lupus in the future (spoiler alert?).
After this, I was relatively okay for about a year. I graduated from college, and started working full time in a pretty stressful position, but I was thrilled to have my first “grown up” job. I still had digestive issues, fatigue, and a lot of random numbness and tingling, so I finally sought out a Functional Medicine Doctor. He found that my iron levels were literally zero, and referred me back to my Gastroenterologist to confirm that I didn’t have bleeding in my intestines. Everything wound up okay, but since I was already on iron supplementation and it wasn’t working, I was referred to receive iron infusions.
Finally, with my doctors alarmed at all of these odd symptoms, and with new symptoms like joint pain and swelling, photosensitivity, and mouth ulcers popping up daily, I knew it was time to see a Rheumatologist. With a lot of prodding from my parents, I finally got the courage to go see someone. This time, my ANA count came back very high, and my inflammatory markers were elevated. The Rheumatologist diagnosed me with Undifferentiated Connective Tissue Disease (UCTD), which has evolved to Lupus over the last year and a half, and immediately started me on medication.
The medication has done a great deal to maintain my symptoms and I am incredibly fortunate to not have organ involvement with my disease, but I knew immediately that I wanted to do whatever possible to ensure that I never get to that point, and to reduce my dependence on prescription medication as much as possible. I realized through research that autoimmune disease is tied to leaky gut (more posts to come on this!), and began putting much of my focus into healing my gut. I got on a low FODMAP diet in addition to Paleo and found immediate relief, and was tested and treated for Small Intestinal Bacterial Overgrowth (SIBO) which helped me tremendously.
Currently, I am still working on healing my gut, and am finding that living with multiple autoimmune diseases means that what works well one day won’t necessarily work well the next. In addition to diet changes, I have also found out how important lifestyle changes are. Stress reduction is a huge focus of mine. (So quit asking when the grandkids are coming, mom!)
While everything is a constant work in progress, and will likely remain so for the rest of my life, I feel fortunate to have found all of this out and started working on it relatively early, and hope that this will prevent me from ever progressing to later stages. As cliche as it sounds, I think that my journey has been somewhat of a gift as much as a challenge. I truly feel that Lupus has forced me to re-evaluate my life to find what is most important to me, and really look at what I want to do with my life. As someone who has always been very Type-A and career driven, I have had to learn to slow down, and was surprised to find that having a family is more important to me than having a huge career.
Also thanks to my health journey, I am now a Nutritional Therapy Consultant so that I can help others like me, who have been trying for years to find the answers to their health woes with no success, get healthy and lead full lives again.
I am by no means cured but I continue to improve daily with my approach, and will continue to do so until I achieve remission. I’ve come to realize that healing is not a quick or easy path, but rather a long journey with many ups and downs. There is no one “quick fix” to getting healthy, it takes a lot of work, commitment, education, and many healing modalities, but I believe it can be achieved!