I was recently diagnosed with celiac disease, and I could not be happier about it.
I used to think celiac disease was simply an allergy to gluten. However, celiac disease is “an autoimmune disorder that can occur in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine.” Due to this damage, the body cannot properly absorb nutrients. When celiac disease is left untreated, it can lead to serious health issues.
So, what does this all mean? I need to stop eating anything that contains gluten – which is anything that contains wheat, rye, or barley. This was an upsetting idea at first. Bread? Pizza? Cake? Cookies? Cereal? Pretzels? BEER? All off limits now.
I got tested for celiac disease because my dad has it, and he has been bothering me for a couple years now to get tested because sometime celiac disease is misdiagnosed as IBS, which I have. I never had severe GI symptoms like he did (like, emergency room-level pain), so I didn’t think it was likely I had celiac. However, I went on a low-carb diet in December of 2014 and did not eat as much food with gluten in it. In January, when I increased my carb and consequently my gluten intake again, I noticed my stomach bothered me more than it had when I wasn’t consuming as much gluten. I figure I would get the blood test done, just in case. Both my doctor and I doubted it would come back positive.
But it did. And I was bitter. I have to stop eating gluten when I barely have symptoms? UGH. In the days leading up to my follow-up with the GI specialist, hoping to find answers, I started reading more about celiac disease.
That is when my attitude did a complete 180.
While my GI symptoms of celiac were minimal compared to people like my dad, I have a whole set of other symptoms that occur in adults who have celiac. I felt so free and victorious. YES. I AM NOT A HYPOCHONDRIAC. For years, I had a bunch of minor health issues that, when put all together, were at times difficult to deal with – more mentally than physically, though of course I wasn’t feeling 100%. I kept researching and trying to figure out what was wrong. I was convinced there had to be SOMETHING that connected all of these weird little issues. My family and friends were patient and supportive, but over time it just seemed like I was being dramatic. But with this diagnosis of celiac disease, all these little seemingly unconnected minor things that were heaped on top of me finally, collectively, had a name.
Finally getting this diagnosis of celiac disease took about 8 years (the average time it takes an individual to be diagnosed with celiac is 6-10 years). It all began my freshman year of college, in 2007. I had pretty moderate to intense GI issues on a regular basis. It seemed like it didn’t matter what I ate, my stomach was unpredictably set off. At the end of my freshmen year, I visited the doctor and got some blood work done to eliminate conditions like inflammatory bowel disease. The tests came back negative, and I was told I had irritable bowel syndrome, or IBS.
My sophomore year, my GI problems continued. I also began to have severe anxiety and irritability, sinus infections, and weight gain.
My junior year was better for GI symptoms. It felt like I had gotten my IBS under control. However, my anxiety continued, I had bronchitis, and I was constantly tired. Like, taking four hour naps, always needing some caffeine, having trouble concentrating, tired.
The summer between my junior and senior year, I saw a psychiatrist regarding my anxiety medication. I was worried it wasn’t the correct kind or dose because I felt so apathetic, unmotivated, and tired ALL THE TIME. She looked at my blood work that was on file and told me I was anemic. She was upset no one told me before that I was and explained that was why I was so tired.
My senior year was similar to my junior year, though I tried to fight the fatigue I constantly felt I was under by taking iron supplements. I got sick again during student teaching and had to miss an entire week of school. My first year of post-graduate work was very similar to my senior year. My symptoms didn’t change too much. Again, I experienced multiple sinus infections, and I noticed when I worked out sometimes my feet felt numb.
In the winter of 2012, in addition to all my past symptoms, I began to experience even weirder symptoms in my feet. My toes would swell around their knuckles, looking like sausages. They would change color and temperature when exposed to cold, and they felt numb often. Sometimes it was difficult to walk with a normal gait. I thought I had some sort of arthritis.
Over the course of the next few months, I had appointments with my primary care doctor, a podiatrist, a rheumatologist, and a vascular specialist. I had discussions of my complete medical history, panels of blood work done, inserts put in my shoes, my fingers examined under microscopes, X-rays taken, a treadmill stress test done, etc. My circulation was normal. I was told the color and temperature changing in my feet was from Raynaud’s phenomenon, and that the numbness could be from some sort of neuropathy, but that would require more tests. Lupus, rheumatoid arthritis, and other autoimmune disorders were ruled out. However, my antinuclear antibodies, or ANAs, were slightly high. The rheumatologist said that could just be my individual baseline, or it could mean I would eventually develop an autoimmune disorder in the future. (Now, it seems like I had celiac disease even then, which is maybe why my ANAs were high, but the possibility of celiac was never discussed or tested.)
I accepted that I had Raynaud’s and chose not to undergo more tests for neuropathy. Dan and I were going to get married in a few weeks, and after months of frustrating symptoms, lots of tests, and little answers, I just wanted to concentrate on that and moving forward in our lives.
Since that time, there hasn’t been a major change in my symptoms. I kept experiencing it all – IBS, anxiety, fatigue, frequent headaches, numbness and tingling in my feet, joint pain, dizziness (especially if went too long without eating, as if my blood sugar was dropping), anemia, mental fogginess, muscle cramps, nausea, and sinus infections every few to several months. I just accepted I had a lot of weird little issues, that was just the way I was, and that was all there was to it. I couldn’t do anything about it except deal with it.
After my blood test for celiac disease came back positive, though, and I began reading about more in depth about it, I learned ALL OF MY LITTLE WEIRD SYMPTOMS WERE FROM CELIAC. Every. Last. One.
Suddenly, my diagnosis no longer felt like unfair news. It felt like the most freeing, positive, uplifting personal health news I had heard in years. I wasn’t crazy. All of the tiny issues I was convinced had a shared answer, did. And though eating gluten-free will be a challenge at times and of course requires sacrifice, I am thankful that the autoimmune disorder I have can be managed solely through diet. I know others are not so lucky. I also am extremely motivated to not cheat on my gluten-free diet or ignore my diagnosis. Because I was diagnosed after age 20, my risk of developing a second autoimmune disorder is 34%. Not only that, but failure to treat celiac can lead to other serious health conditions, such as cancer. With family history of both diabetes and colon cancer, I am extremely motivated to address celiac appropriately.
After following up with a GI specialist, I had an endoscopy and biopsy done to confirm the diagnosis of celiac that my positive blood test and list of myriad symptoms suggested. The endoscopy and biopsy both confirmed it. The damage to my small intestine was pretty extensive – my villi were almost completely blunted/flattened. That result is also something that motivates me and makes it easy to accept eating gluten-free. My body will heal, and my symptoms will go away, but that will only happen l if I do not consume gluten. I know it will be a journey – it may take up to a couple years for my body to heal, and it is a lifelong commitment to avoid further damage – but I am just relieved I have a solution to years of feeling crappy. I am also grateful I have a built-in support system and go-to for questions with my dad, who has already been living gluten-free for some time now.
I am sharing this story because I am sure there are others out there who have gone through similar frustrating health journeys, whether they lead to a diagnosis of celiac disease or not. I want others to know they are not alone, and I want people who haven’t found a diagnosis yet not to give up. If you have symptoms like I did, or have a family member who has celiac disease, and you haven’t been tested for it yet, I encourage you to ask your doctor for the blood test. Having an answer isn’t restrictive, its empowering.
A friend said a family member of hers had been diagnosed with celiac disease. After switching to a gluten-free diet, he said, “I didn’t realize how bad I felt until I started feeling good.” I can’t wait to start feeling good.