Such a melodramatic title, huh? Well, for me, it was the “beginning.” The beginning of discovering the issues with my gut and how it was affecting my overall health. The gut seems like such an inconspicuous thing. I can think of several other organs/systems that I would have been far more concerned with than my digestive system. My heart, respiratory system, etc. But I came to find (and am still learning) how the digestive system can wreak havoc on one’s overall health. Let’s get to the story, though.
When I was younger, I wasn’t “sickly,” but I can remember my parents rushing to get me something to eat when my blood sugar would drop and I would begin sweating and feeling nauseous. I also remember my first migraine. I was no older than 11 or 12 and was lying in the nurse’s office sweating profusely and vomiting, lights and sounds making me ill. I also remember being tired. So incredibly tired. I would go to school, return home and nap. Upon awaking, still tired and sluggish. I would eat dinner with my parents, push myself through homework and return happily to bed. During this time, I was tested for mononucleosis and streptococcus more times than I can count. I was also still experiencing migraines. Migraines which would occur several times a month and would leave me immobile on the couch or in my bed, praying for the pain and the vomiting to subside. I missed out on holidays, family get-togethers, and time with friends. I couldn’t understand why I was plagued with migraines while my peers rarely encountered the common cold. Speaking of the common cold, my immune system was awful. Any illness that a single person was experiencing in a 100 mile radius seemed to affect me.
I now was at the tail-end of my high school career and spoke with my doctor about all of these issues. Instead of targeting the root of the problem, I was put on medication for migraines. The first few prescriptions did not work for me, so I was later put on an anti-seizure medication known as Topamax. Taken daily, I did notice less migraines. I did not realize that Topamax has serious side-effects. Upon hearing a personal account of an individual taking Topamax for migraines, I was frightened. I didn’t want to lose my hair or have my memory impaired (I would be starting college soon, after all). I told my doctor that I didn’t want to take the medication any longer. I realized that I would rather suffer through migraines than take a medication that has many ill-effects. I slowly decreased my dosages and had nearly a week of withdrawal symptoms and an awful migraine. I remember my sweet boyfriend (now husband) visiting me and bringing me pretzels and Coke (the cure all combo).
Fast forward to my first year of college (still experiencing migraines) to my second year of college. I was home visiting and went to see my Grandma. My Grandma subscribes to Reader’s Digest and while visiting, she had me read a story. A story of a woman who sounded an awful lot like me. A woman who had a migraine every single day at 3 pm. I remember the woman’s story perfectly. She was convinced she had a brain tumor. After meeting with her very wise doctor, he ordered blood work. He tested a multitude of things, including her IgA (tissue transglutaminase antibody). Of course, her results were positive and she soon began eating gluten free and guess what? Her migraines disappeared!
Reading that article, everything clicked. If I were a cartoon character, a light bulb would have lit up above my head. I quickly called my doctor’s office and pleaded with them to order the blood work. Being the unprofessional individuals they were, they did not see the point of ordering the panel. Several months passed and several phone calls were made. Ultimately they gave in. Success! I returned home from college and had my blood drawn. A week or two went by and I received the most gratifying phone call. A phone call from my primary care physican’s office stating that my blood work was “abnormal” and that I needed to see a gastroenterologist. I felt so pleased that I finally had an answer. That I too could begin eating gluten free and have my migraines subside.
Several weeks passed (I began eating gluten free during this period) and I met with the gastroenterologist. He asked me many questions and talked to me about my gut. I learned that I have celiac disease and that I am required to eat gluten free to maintain the illness. I learned about the villi in my small intestine and how they were damaged and could no longer absorb nutrients from foods. I also learned about the other illnesses that celiac disease can cause if one does not eat a gluten free diet. I had more blood drawn to ensure I wasn’t anemic and I was on my way!
I cannot say that this time was easy. I cannot say that I didn’t miss pizza and flaky Italian bread. I cannot say that tears were not shed. It is not simple, nor will it ever be. That isn’t to say that it isn’t worth it. Quite the opposite, actually. On top of zero (I repeat, zero) migraines, my energy began to increase in leaps and bounds. I didn’t need to nap every single day! My digestion was better, I didn’t have stomachaches or vomiting. It was miraculous!
I can proudly say that in four, almost five years since being diagnosed, I have not intentionally eaten gluten. It will never be worth it to me. I can say that I have been unintentionally glutened at restaurants due to cross-contamination.
I have seen how amazing the body can repair itself and how eating according to your body’s needs will heal the damage done.
Recently, that lesson has been reinforced.
I just graduated from college in May 2013, earning my bachelors degree in social work. I was accepted to my top choice for graduate school in March. Zack and I were engaged in August 2012. Returning to my hometown, I was planning our wedding, taking a pre-requisite for graduate school, and for some reason, decided working a summer job sounded like a good idea (ha ha). We also were looking for apartments and planning our move. For the summer job, I was required to maintain a physical with the standard urine sample. After giving my sample, one of the aides informed me that I had a large amount of protein in my urine. The doctor who conducted the physical advised me to see my primary care physician (a different doctor than the one from the above paragraphs). At this point, I wasn’t terribly alarmed. Fast forward to multiple urine samples and a twenty-four hour urine sample and a referral to a nephrologist. I learned that I have proteinuria and hematuria (an excess amount of protein and RBCs in one’s urine). My nephrologist who is a wonderful person tried to calm my nerves, but it didn’t really help. Each of these things can indicate a whole host of issues, none of which are minimal. I was sort of in a state of shock. I had barely just turned twenty-three, I was getting married and starting graduate school in a few months. How could this be happening?
I was scheduled to have several tests. Five tubes of blood drawn, multiple ultrasounds of my kidneys and lastly a kidney biopsy. For someone who does not enjoy hospitals, a biopsy of one’s kidneys while fully awake did not sound like the most enticing prospect. However, I marched forward and was scheduled for the biopsy approximately two weeks before Zack and I wed. I was told it would take a while to receive results because the tissue sample was sent away for analysis.
When the results were received, I returned to my doctor’s office to receive the information that I had been dreading to hear. I was told that my blood work indicated a positive Antinuclear Antibody test (ANA) and my kidney biopsy showed a rare genetic condition, Thin Basement Membrane Disease which causes protein and RBCs to filter from the basement membrane of my kidneys. In addition, I was diagnosed with leaky gut syndrome, which is still widely debated among some physicians. At this appointment, I felt like each item was dropped on me like a stack of books. My doctor then stated I needed to completely cut out dairy from my diet and begin a vegan diet. She stated that a vegan diet, along with my gluten free diet, would eliminate nearly all of the inflammatory foods from my diet. A vegan and gluten free diet will also hopefully maintain the other autoimmune disease that I may possibly develop in the future.
Although my diet is exceedingly limited now and eating out is even harder, I am thankful to have been in the care of a doctor who understands how the gut affects our overall well-being. I am thankful to feel strong and energized by my plant-based diet. I am proud of all of new, “weird” foods that I eat. I am so very blessed to have my health and as my dad told me after my appointment; “it’s better than the alternative.” And so it is.