Going Gluten-Free isn't easy. It isn't fun at first. But, eventually, it is worth it.
Looking back at my life I can say that I've always had certain tummy troubles. I had always chalked them up as normal or nothing to be concerned about. Given that these things are not normally discussed, especially as a girl, I never had reason to believe that my "issues" were in fact, abnormal.
Once I started college these all came to a head. As a freshman, I was once more given to write them off as the effects of school food, eating late into the night, or a consistently unhealthy diet of bagels, pizza, and cereal. Going into my sophomore year, however, I came to a realization that there was something wrong with me that went beyond my stomach.
I had always been of a healthy weight that tended not to fluctuate too much, but in the fall of 2009 I had put on a lot of weight. Enough that my yoga pants became my go-to and the scale at the doctors office jumped up a lot more than I was accustomed to. I was absolutely exhausted all the time, despite my getting enough sleep. I was convinced that I had hypothyroidism. I went to the student health clinic, they did a blood test and diagnosed me with anemia, which I knew already. I was instructed to take a huge amount of iron supplements, which I did.
These iron supplements threw my poor stomach for a major loop, as iron supplements tend to do. Resulting in stomach pain and increasing irregularity. This is when I can pinpoint the severe constipation that plagued me for the next year and a half. In addition to constipation I began having fatty bowel movements, increasingly worse sharp stomach pains, and regularly was waking up with heartburn.
November of 2009 was when I first went to my primary care physician. She also agreed that there were some troubling symptoms and referred me to a gastroenterologist. The first available visit they had was at the end of January; I waited.
Before my appointment I did everything I thought a good patient would do; I made a timeline, typed symptoms, and had an extensive family history. I arrived early to my appointment and was excited to finally be going somewhere with my issues. The doctor I visited, however, did not live up to my or my primary care physician's expectations. I met with a cranky, dismissive, couldn't-care-less, doctor. One who wrote off my symptoms, dismissed my thorough family history, and was quick to prescribe copious amounts of expensive prescriptions. The one lucky break I had was that he advised an upper endoscopy and a colonoscopy. I, however, was so put off by his aforementioned characteristics that I was very hesitant to follow up.
By Febuary of 2010 I was at an impasse, mentally and physically. I returned to my primary care physician who took several x-rays of my stomach. She recommended seeing a different gastroenterologist and starting a course of laxatives and miralax. I went ahead and took her suggestions. I also scheduled an appointment for that summer with a different, female doctor.
I met with this new doctor in the summer of 2010. Yet again I was met with resistance over the idea that gluten, or any dietary changes with be of use. She completely dismissed all of my upper intestinal symptoms and recommended only a colonoscopy. She also prescribed some medication to dull the, now severe, stomach pain. I scheduled a colonoscopy with her for the end of the summer. Come August I canceled it because of my lack of faith in her judgement.
I started my Junior year at school in September of 2010. This is when I began to experience the worst of my symptoms to date. I was completely lost and confused. I was being told so many different things by my doctors and other people; I can't even tell you the number of times that I was told I probably had Irritable Bowel Syndrome and I should just get use to it. I was also told all of my problems were in my head. If I just relaxed and didn't obsess so much they would go away.
I felt sick all the time. I was exhausted all the time. I didn't want to eat; I dropped 20 pounds. I decided to go back to my first gastroenterologist who suggested I get a upper endoscopy and a colonoscopy. I called and scheduled the appointments. These ones I actually kept. The processes are not enjoyable in the least bit but I was anxious to get some answers.
Soon after, the nurses called with results of my tests. Preliminarily, from the colonoscopy it appeared I had some irritation in my large intestine that matched the pain and some other symptoms. The results of the upper endoscopy showed patchy, flattened villi that suggested the possibility of celiac disease. I felt so vindicated by even the possibility that I actually had, what I thought all along I had. I eagerly scheduled a follow up appointment with the gastroenterologist to discuss his findings.
Looking back, I can see I was expecting to get some positive feedback on dietary changes. I was wrong. My doctor proceeded to diagnose me with Crohn's Disease and prescribe me a ton of different, and very expensive medications. I was shocked. All of the research I had done thus far showed it was a life-long, debilitating, disease. I sat there crying over the prospect while my doctor looked like he couldn't be bothered. I left that office feeling more helpless than ever.
This is when I decided to take my health back into my own hands. Having quite a bit of knowledge on the subject of gluten-free eating I decided to just jump on in and see what would happen. I decided to go completely gluten-free.
This is the point where you begin to get tested mentally and emotionally. Results are not instantaneous or overnight. Your body needs to adapt, adjust, and begin to heal. I had a terribly upset stomach on and off for weeks. I didn't understand, I was making elaborate gluten-free meals from the many cookbooks I had acquired, yet I wasn't feeling much better.
I soon came to the realization that I was trying to do too many things at once. I stopped making super involved meals and stuck to the basics of gluten-free. I also made an appointment with a Registered Dietician through my primary care office. This was one of the best decisions I could have made.
The nutritionist I went to really helped me sort through the vast amount of information out there. She also agreed that I was doing too much and taking too many supplements. I immediately stopped all of the extra supplements, except for a multi vitamin, and went on a restricted FODMAPs diet (go ahead, Google it!). This eliminated all fermentable carbohydrates from my diet, which did include gluten. I also stopped all dairy products, caffeine, and alcohol. She also stressed the great importance of eating the right amount of protein, which for someone my size is 50+ grams a day. Within a month or so I was back to a very regulated digestive system. I still didn't consume any gluten or dairy but I slowly added back in fruits and veggies restricted by FODMAPs.
I was feeling better than I had in years. I also followed up with a new (!!) gastroenterologist at Mass General's Department of Gastroenterology. He agreed that the medicines I was on seemed unnecessary and over the top. He looked at all my medical records and the results of my tests and agreed with me that the other gastroenterologists were missing something. We agreed on a plan to wean me off my medications and to stick with the gluten-free diet. For the first time I felt like a gastroenterologist was finally listening to me.
Flash forward a few years to now. I am still gluten-free and try to be dairy-free most of the time. I am certainly healthier than I was back then. My weight no longer yo-yos, I have some energy, (at least the right amount for someone who works full-time and goes to school part-time) and my belly is very well regulated. I do still use miralax from time to time, as was recommended by my gastroenterologist, but I only have issues when I've been "glutened" aka when gluten has made its way into my food. I still take a multi vitamin and would like to take an omega 3 supplement but I often forget. I tend to stick with naturally gluten-free foods but I certainly splurge on homemade gluten-free treats on occasion, oh and some ice cream of course.
This was my path to being gluten-free, is yours similar? Feel free to reach out with any questions or comments below, or at kerin.riley(at)gmail.com.