Since I write a lot about my experience with celiac disease, it seems only fitting to share the story of my diagnosis. Like many, the path was long, challenging, and often scary. My consistently shaky health declined rapidly at a point, and my medical records are thick with misdiagnoses. Since my story is long and confusing, it’s hard to figure out exactly where to start, but here goes…
While it’s hard to pinpoint exactly when it all started, I was definitely an odd eater as a kid. I was not picky per se, but I chose raw vegetables over pretzels, ate snack cookies in very small quantities (one or two tiny teddy grahams at a time), and disliked bread and crackers. My favorite foods included peanut butter on celery, other nuts, lunch meat rolled up and eaten plain, and hard cheeses (I do love cheese…). My mom would send me to school with bologna sandwiches, apple juice, an apple, and goldfish; I would actually pick out the bologna and arrive home with two uneaten slices of bread each day.
At some point in middle school, I remember being more self conscious about my weird eating habits and making more of an effort to eat the bread, have the slice of birthday cake, and share peanut butter crackers with friends. Around this time, I first experienced the feeling of “glass shards” moving through my intestines. It occurred several times throughout middle school, and my parents and doctor looked at me puzzled but never made anything of it.
Continuing Digestive Issues
In high school I was an avid athlete, and pasta dinner parties, hotdogs at concession stands (with the bun of course), and bagels from Panera were the norm. At some point I began experiencing severe digestive distress that was not improved by over the counter medications. This was concerning for sure, but my parents and doctor decided it was just stress, and maybe a touch of IBS. I tried to seek a different medical opinion, but as a sick teenager with no understanding of my medical options, I never made it far. Over the counter anti-diarrheals made absolutely no difference, and this perhaps was one of the more concerning signs.
I decided to take to some food experimentation myself and found that my symptoms significantly improved when I went dairy-free. I was tested for lactose intolerance and was a strong positive. While dairy-free alleviated some symptoms, I continued to experience pain and bloating (although at this point it was so normal for me that I didn’t know there was another way of living) and was diagnosed with stomach ulcers and gastritis after an instance when I was doubled over in pain at work.
Looking back, it is particularly concerning to me that these symptoms were ignored. What if I had Inflammatory Bowel Disease (IBD) like crohn’s or colitis? Having medical professionals constantly overlooking and minimizing these issues could have led to more catastrophic outcomes – I feel very lucky that it was celiac disease.
Rapidly Declining Health
College continued to show similar symptoms to those above, but also some new. My environmental allergies worsened, the digestive symptoms changed but were still ever-present, and I began getting more headaches. I mention these seemingly unrelated symptoms because they are experiences that cleared up after time on a strict gluten-free diet.
When I was in my early twenties and just out of college, my overall health took a turn for the worse. I had just moved in with my now-husband and my diet changed as we began eating and preparing most meals together. Previously an oats for breakfast, rice bowl for lunch, and rice/potatoes for dinner kind of girl, I adapted to the amazing meals my talented husband prepared: cream of wheat for breakfast, fancy sandwiches for lunch, and pasta for dinner. I still cringe at the thought of this! After a special pasta dinner, I grew violently ill and was left unable to eat solid food or go to work for three weeks (I’ll spare the gruesome details here). During this time it was a mostly liquid and BRAT diet. BRAT stands for Bananas, Rice, Applesauce, and Toast.
I continued frequent trips to various doctors with no results – blood work, allergy tests, and other examinations showed nothing conclusive. At one point a doctor suggested my low vitamin levels were due to anorexia… this was infuriating – I was eating almost constantly and still losing weight (he didn’t believe me). I began bringing my husband to my appointments with me so he could back up my symptoms and explanations. It was a nightmare.
The final diagnosis came through my adamantly demanding the celiac disease blood test, followed by an endoscopic biopsy. My own food elimination diet and experimentation at home finally helped me to realize that wheat was the culprit, and celiac disease was a possibility. A small irony is that I grew up with a close friend with diagnosed celiac disease, but since her symptoms were so different than mine, it actually prevented me from pursuing this option earlier.
The Long Road to Recovery
Learning to live with celiac disease was a hurtle in itself – gluten can be found in so many unexpected places. I found that years of living with celiac disease and eating wheat damaged my digestive system quite a bit. I was also lactose and fructose intolerant, and had trouble with nightshades and other non-gluten free grains at my time of diagnosis. I experimented with low FODMAP, paleo, and nightshade-free diets for a while. Eventually, after about 3 years on a severely limited diet, I began adding other foods back in. It wasn’t until 4 or 5 years on a gluten-free diet that I finally felt good eating rice and most gluten-free products.
While tough, the whole experience taught me a lot about my body and the value of health in our lives. It’s something I’ll never take for granted again, and for that I am grateful.
What is your health story? Let us know in the comments section below.
With love and gratitude, ❤︎ Jamie