My story is both unusual and typical for a modern day celiac. How my celiac disease was triggered is unusual but the time it took for diagnosis is unfortunately all too common.
I was 27 years old and working as an R.N. in the Intensive Care Unit when I was diagnosed with Stage 3C Colorectal Cancer. Other than the cancer I didn’t have any major health issues or problems.
I worked 12 hour night shifts and had worked 24 shifts as an ambulance EMT before becoming a Nurse, so I was used to working long hours and staying up nights.
I began chemotherapy and radiation immediately in an attempt to shrink the tumor prior to surgery. After the chemo and radiation treatments were complete, I had surgery to remove the tumor and had a colostomy bag for around 60-90 days.
During the tumor removal surgery doctors found that the cancer was still alive in my lymph nodes. Therefore, I had to undergo more chemo treatments using a different combination of medications.
During the radiation treatments I experienced severe limitations to my diet because of stomach cramping, diarrhea and general GI distress. The chemo added to these issues with its constant nausea and occasional vomiting.
After all the treatments and three surgeries I was done with cancer, eager to recover and ready to get back to living my life.
Life After Cancer
I took care of myself, exercised, and tried to replenish nutrients and remove toxins to speed up the healing process. However, over time I continued to feet worse and worse. When I’d speak to my doctors about severe fatigue they would check for cancer and then tell me that I was fine.
My GI issues got worse instead of better and my diet became more and more limited. I also started getting frequent migraines and my health slowly declined.
Five years after finishing treatments for cancer I was extremely grateful that I was still officially cancer free… but I felt worse than I had ever felt in my life. I told my doctors that I seemingly felt worse everyday, even when compared with how I felt while going through radiation and chemo.
Over the years multiple doctors repeatedly told me that they “don’t treat fatigue, they only treat the cause of the fatigue.” I said “Great! Let’s treat the cause then.” They all ultimately told me, they don’t know the cause so there is nothing they can do for me.
Like many people I continued having problems and my doctors weren’t giving me solutions. My daily medications were gradually increasing due to seemingly unrelated issues like migraines, joint pain, muscle aches, scalp psoriasis, nausea, stomach cramps, etc.
7 Years Later: Celiac Disease
One year, when it was time to get my routine colonoscopy, my gastroenterologist (GI) recommended adding an endoscopy because I had been experiencing a lot of heartburn. To this day I am so thankful for her insight!
If my GI hadn’t done that endoscopy I don’t know how much longer I would have gone before finding out I had celiac disease. During that endoscopy she found obvious celiac disease and took the necessary biopsies.
It took 7 years to get diagnosed from the onset of my symptoms to diagnosis. Unfortunately, this is about the average amount of time for diagnosis of celiac disease.
One unusual factor in my case was that they found I had celiac during an endoscopy and THEN confirmed the diagnosis with blood tests.
Another unusual factor is that according to my doctors the celiac disease was likely triggered by any or all of the cancer treatments. The surgeries, radiation, and/or chemotherapy are all capable of causing enough stress on the body to trigger the celiac disease.
Recovery Finally In Sight
I looked at my celiac disease diagnosis as an opportunity to heal. I finally knew what the problem once. After spending years complaining to doctors and getting no help, the power was in my hands to! I researched, learned about gluten cross contact, cleaned out the kitchen and bought gluten free foods.
I was desperate to feel healthy again and I didn’t want accidental gluten exposure to sabotage me. I completely stopped eating out because of the cross contact risk. I told myself that once I felt better, maybe I could look into eating out socially again.
I read blogs, listened to podcast and learned what the experts were saying. Months passed by and I became better at living gluten free, but I wasn’t feeling better yet.
Meanwhile, I kept hearing and reading about how people went gluten free and quickly felt better. One person even claimed they went gluten free at breakfast and all their symptoms were gone by lunch.
As time went by my relationships with friends and family were suffering. If I went out to eat with people and didn’t order food, they would spend the meal trying to get me to order food because there “has to be something” here you can eat. I got tired of teaching about cross contact and then hearing “can’t you just take off the croutons” or “order it without a bun.”
People would frequently compare having celiac disease to being on a diet or being a vegetarian. People would eat gluten in front of me and tell me they are also on a strict gluten free diet. Friends have claimed they totally understand what I’m going through because they have been on a diet for months and it’s really hard too.
A note for loved ones of celiacs: Celiac disease is nothing like being on a diet. You can cheat on your diet without getting physically ill. You won’t be on the diet for the rest of your life like a person with celiac disease. The biggest difference is that you can show up anywhere unplanned and eat a chef prepared five course meal. You can just eat small amounts and still stay on your diet while getting full and enjoying the event.
A person with celiac disease can show up to that same event unplanned and they will not be able to eat a single bite of that same five course meal. It doesn’t matter how hungry they are. There is no cheating and then eating less calories tomorrow. Cheating will trigger an auto-immune reaction that causes physical damage in the body for weeks.
I started feeling very alone and like people didn’t really understand. Even supportive loved ones seemed to be offering me gluten at times when I was hungry and vulnerable.
I went online for support from other celiacs but I just kept hearing stories about how great life is with celiac disease. So many people seemed to effortlessly go gluten free, get their health back and claim to live a completely normal life.
All the celiac positivity made me feel isolated in my own community. I felt like I must be doing celiac wrong. After all, they don’t fear food, they all embrace it.
I can’t relate!
When someone makes me a gluten free dish of food, I am scared to eat it. When I take a bite of food and realize I completely forgot to check if the package said gluten free, a moment of cold fear goes through me. A picture flashes through my mind of what my next week will look like if I just ate gluten. From my perspective if you don’t fear food when eating out at restaurants, you aren’t paying attention.
As for living a normal life, I don’t even know what to say. I’m the only person in my world with celiac disease, so I see normal everywhere. I don’t know if they are in denial or what, but there is nothing normal about having to call a restaurant ahead of time with a bunch of questions, perform interrogations throughout the meal, and then sometimes get sick anyway.
I spend twice as much money on half as many groceries because pricing gluten free foods in the $5-$10 dollar range has become acceptable. I don’t run out when the ice cream truck comes, and can’t eat a single thing when I’m invited to Christmas at a friends house. These are just small food related ways that celiac disease effects normal.
All of this sentiment that having celiac disease is great and doesn’t change your life at all just isn’t my story.
It has changed my life, my relationships, my social life, my health and it has affected my family. After all, every holiday revolves around food.
I’m not saying it’s the end of the world, but it is something I have to remember every time I eat.