Gluten is not actually evil. As a matter of fact a pretty wonderful protein that makes bread light and fluffy, cookies soft and chewy and pizza crust deliciously flakey. Sigh. But in my case, and the case of many others living with Celiac Disease or gluten intolerance, gluten is evil. Even though gluten free alternatives don’t always taste as good as the real thing and I always have to be careful with what I consume, I’m thrilled to have discovered this lifestyle. Before going gluten free, I spent spent years in pain and discomfort hopping from one doctor to the next trying to find the answers to my ever-growing list of bodily issues. Since going gluten free my problems have slowly disappeared! I’ve been able to enjoy a life free from the constant battle that I have dealt with for so many years, a battle I truly thought had no answer.
My Story with Gluten:
I can trace my struggle with stomach issues back to the 6th grade, leaving school early to check up with doctors and get various tests done. Medications prescribed to me took the edge off and I managed to get by ok until high school. I recall sitting in class feeling my stomach “blow up” and expand. Pains were sharp and my abdomen would swell to the point of looking 4 months pregnant. Soon I could only wear large, baby doll tops that covered my enormous belly. I even started to avoid things like going to the beach and putting on a swim suit. Not only was I in pain, but i was embarrassed! I was never comfortable–often hunched over during the day an hour or so after eating or pacing the hallway during the night trying to walk off the pain.
Around the end of my senior year of high school, I got blood test for celiac at a new gastroenterologist. I tested positive and was told that they next step was an intestinal biopsy via endoscopy (where a camera and instruments are fed into the small intensive through the mouth) to confirm the diagnosis. Apparently, this is the “gold standard” for a proper diagnosis. I was so excited to possibly have the answer to what I had been dealing with day in and day out. I could’t have been more surprised or disappointed when the results came back negative.
So that was it. Gluten wasn’t the answer or the cause of my problems. I would continue to eat how I normally did and just deal with it like I always had. I went away to college and did just that, letting my stomach decide what I could do each day. How many parties, outings with friends and workouts I missed because I had to stay in, curled up on my bed in fetal position clutching a heating pad.
Off to more specialists I went! I even tried chiropractics, acupuncture, homeopathic medicine and a nutritionist out of desperation. With no relief, I figured it was time to give up. It would always be this way. While I took a break from hopping around to different doctors, I didn’t stop searching the web for answers. Every once in a while, I would stumble upon articles mentioning how many people suffering with gastrointestinal problems found relief on a gluten free diet, even if they tested negative for celiac. I also came across documents explaining that intestinal biopsies don’t always indicate celiac. Celiac is a patchy disease and sometimes the samples of tissue taken are in a region of healthy intestine. Furthermore, there are cases of people testing negative simply because they haven’t had the condition long enough to cause the significant gut damage typically seen in celiac cases.
Well, I obviously didn’t have anything to loose so I decided to give the gluten free lifestyle a whirl. It wash’t too difficult for me to adjust because my diet consisted of many naturally gluten free foods already(fruits, veggies, meats, dairy). I did, however, struggle a bit when it came to areas such as my beloved sweet treats and pizza!
I really didn’t think the diet was doing anything. I still had many of the same symptoms, maybe to a slightly lesser degree, but nothing like what I had hoped. But I stuck with it, thinking that maybe my body just needed to heal inside before things could calm down. About a month later I realized my symptoms were, in fact, significantly less. A few weeks after that my stomach was completely flat, pain free and I felt amazing. Even extra-intestinal problems that I didn’t think were connected started to resolve as time went on. My finger nails looked healthier and less brittle, I felt more alert, my blood iron levels normalized and my period returned after missing for 11 months. I couldn’t believe that after all the doctors and specialists I went to, no one suggested that I modify my diet. It is so true that food can be the body’s best and worst medicine.
So in the end, I’m not 100% sure what my diagnosis should be. As time goes by, I become more sensitive to cross-contamination or accidentally consuming gluten. Effects are systemic (fever, rash, brain fog) as well as gastrointestinal. My symptoms are consistent with what many experience with celiac disease, but I never returned for another endoscopy for confirmation. Doing so would require me to return to eating gluten for a period of time and it’s just not worth it to me. I am lucky to have finally discovered what was making me so sick and putting my body in harms way to in order to get confirmation seems unnecessary.
I know there are tons of you out there battling each and everyday with conditions of unknown etiology–gastrointestinal in nature or not. My hope is to have motivated you to keep searching for answers because you can’t always rely on the word of a medical professional. It is so important to educate yourself and become your own advocate. There are countless routes to take when looking for a solution but in the end it’s your life and your body–you’re ultimately responsible for you. If one door closes in your face, try another. What is the alternative?