I got used to it. I got used to the pain, the cramping, and the bloating every time I ate. I had lived with an infuriating diagnosis of unexplained Irritable Bowel System (IBS) since I was a young child. Each doctor had his own advice—more fiber, more whole wheat, fiber supplements, laxatives, medications—but no answers and no symptom relief. So, that was my “normal.” Everything hurt and nothing helped. Aside from GI issues, I was a very healthy child and young adult. After graduating from college and graduate school, I began my career as a licensed psychotherapist, helping people manage a multitude of mental-health issues. On the side, I pursued my passion for teaching fitness and yoga classes throughout the Boston area. Life was good. I had met the man who would eventually become my husband, I had wonderful friends and family, and I loved my work.
My life began to change drastically in the summer of 2010. I had noticed my body experiencing bizarre swelling and inflammation, and I was out of breath when doing easy activities, such as walking my dog. With all of my GI issues, I had developed a pretty high level of pain tolerance and brushed off the symptoms, even though I felt faint teaching my fitness classes, and I was constantly uncomfortable. A few weeks later, I knew there was a big problem when I had chest pain, tachycardia, and constant fatigue. Hospitalized many times, I was given high doses of NSAIDS and steroids—but no answer. Everything came to a halt during a September hospitalization when doctors found a large mass in my right ventricle. Gulp. I underwent numerous tests—bone-marrow biopsy, liver biopsy, heart biopsy, CT-scans, MRIs—all with no answer. Finally, I stabilized enough to be sent home, with a hefty dose of prednisone, a (later on retracted) hypothesized diagnosis of a rare blood disorder, massive doses of medication to make the mass go away, and insistence that I not work or do any physical activity other than walk my dog.
I decided I did not like this diagnosis, which was given by process of elimination, and by my elevated eosinophil levels (an indicator that my body was inflamed and fighting something). It left me confused with no explanation as to why a healthy young woman would suddenly come close to death. With plenty of time on my hands to Google away, I scoured the interwebs with my then boyfriend and family. We began to wonder if this was some sort of autoimmune phenomenon. My liver enzymes were completely abnormal, my thyroid tests were off, I was infertile, and my stomach was a constant mess. I was on a steady dose of antibiotics, indefinitely, to “protect” me from infections because of my steroid suppressed immune system. Boy, I wish I knew then what I know now and had refused those meds. Each time I had a hospital procedure, I came back worse than when I had gone in. Costochondritis after a heart biopsy (inflammation under my ribcage) and then C. Difficile after a liver biopsy (a potentially deadly bacterial infection in the colon) finally made me stop and think that this could all be GI-related.
Thus began the great gluten investigation. At this point, no doctor had ever mentioned a potential correlation between Celiac Disease and all of my bizarre symptoms. When I finally found a gastroenterologist who believed me—and did not tell me to eat more Metamucil and whole wheat—our suspicion was confirmed. Celiac Disease.
I went on a mission to heal. I was still on disability and had the time to work on my training to become a holistic health coach, with no intention at the time of later focusing my therapy/coaching career solely on people struggling with health issues, autoimmune disease, food intolerances and sensitivities.
When I was further diagnosed with Ulcerative Colitis, I was determined not to take medication and to manage my digestive system through diet. I was already gluten- and dairy-free, which initially brought some relief, but I knew that I had a lot more healing to do. My doctor ordered a hydrogen breath test, and I was told I had Small Intestinal Bacterial Overgrowth (SIBO), most likely as a result of the NSAIDS, steroids, antibiotics, and food toxins I had been consuming. Bam! Whatever I could do to heal became my goal, no matter how crazy and independent that seemed.
I did my research. For a girl who had lived for years eating only white meat (healthier!), fish, low-fat, healthy whole grains, artificial sweeteners and diet sodas—yadayadayada—my mind was turned upside-down and backwards. When I was really desperate for changes, I read about AutoImmune Paleo (AIP, from sites like Balanced Bites, Paleo Parents, and Paleo Mom) and Specific Carbohydrate Diet (SCD, from SCD Lifestyle.com), and low FODMAPS (a diet that avoids specific foods with higher fructose contents, also known as Fermentable Oligo-, Di- and Mono-saccharides, and Polyols) as those were three diets specified for SIBO, Ulcerative Colitis, and Celiac Disease. I began to make bone broth, buy and cook liver and other red meats, increase my fat intake, cut out any raw veggies, and discovered which foods were big no-nos. Out went my favorites—potatoes, eggplant, eggs, tomatoes—the list seemed endless. When I started to feel a tremendous positive difference in my gut, my belief in the power of the diet grew. Diligently, over the next few months, I kept my bone broth stocked, started taking a fermented cod liver- butter-oil blend, started brewing my own kombucha, took a high-potency probiotic supplement, got rid of most raw vegetables and fruits, and stuck to low FODMAPS.
As for lifestyle, I began to meditate daily; I began acupuncture and massage; I cut out all intense exercise, sticking to walking, yoga, and light weight-lifting. I stopped receiving IV/IG infusions, which were monthly day-long infusions at the hospital to regulate my dangerously low antibody levels. The infusions had made me sicker and sicker. I decided to stop them. This last winter on AIP and SCD, I did not get sick once. Not one time. No flu, sinus infections, colds, Colitis flare—ups—NOTHING—for the first winter in my entire life. That is the proof in the dairy-, sugar-, soy-, gluten-, egg-free pudding, my friends!
And then a new mission began. I started to shift the focus of my career to helping others with health problems. Time and time again, friends would come back from doctor visits distraught and frustrated, with no answers. I came off disability when I was given clearance and decided to leave my job at a social-service agency to focus on my private psychotherapy practice and becoming co-owner of my husband’s holistic-health coaching company, Engin Coaching, Inc. Andrew and I work to help clients create manageable lifestyle changes around fitness, nutrition, stress management, reducing or eliminating negative health habits and behaviors.
However, as I became more and more passionate about my own journey with autoimmune disease, I decided I wanted to focus on helping others with medical issues. I cannot wait to wake up every morning to work with my clients. I have counseled parents of children as young as four, ill since infancy, to a complete reversal of their child’s symptoms. I have worked with my 65-year-old father, a physician, who was recently hospitalized and diagnosed with Crohn’s Disease and Celiac but was made more ill in the hospital, where he was unknowingly given gluten chicken broth (until I insisted he stop eating hospital food). What I have come to learn is that when we have autoimmune disease, we cannot rely on doctors to fix us because they are not educated on the power of diet and lifestyle in healing the symptoms of autoimmune problems.
Never give up. Do whatever it takes to heal from these diseases. It is possible—I am proof of that. Sometimes people ask, “How can you stand your limited diet?” The truth is, I love the foods I eat. Avoiding certain foods that I know will cause inflammation in my body is well worth it to me. Being healthy and able to function in the best way I can, with high energy and immense happiness, overrules eating gluten and other AIP “illegal” foods any day.
Ali Barton, LMHC, LWC, is an independently licensed psychotherapist and licensed Wellness Coach, practicing in the Boston area. She sees patients in her office and via Skype or telephone. Ali currently works with those managing physical and emotional symptoms from a variety of autoimmune diseases, gluten, and other food/product allergies, infertility, anxiety, depression, and other health issues. Her website is www.engincoach.com, and she can be contacted at firstname.lastname@example.org.