May is National Celiac Disease Awareness Month. I was diagnosed with Celiac Disease back in 2012, but looking back, I probably had it for a long time, likely even decades before then. Growing up, I was always really exhausted and needed a lot of sleep, experienced abdominal bloating and pain that felt like spasms, gas, acne, eczema, among others. As I got older, I still experienced acne, abdominal pain and bloating every single day, missed menstrual periods, had extreme fatigue, joint pain and swelling (particularly in my fingers, hands, and wrists), dermatitis, chronic Iritis, and infertility. Doctor after doctor would tell me “everything looks good!” when I got my lab work back. No one could tell me why I felt so awful every day. It wasn’t until I was having trouble getting pregnant that a string of doctors’ appointments led me to a diagnosis.
My gynecologist discovered my thyroid was a little off and sent me to my primary care for a physical. It was there that I did an entire physical only for the doctor to once again say, “everything looks great!”. I said if everything looks great why do I feel so awful, have all of these symptoms daily, look like I am four months pregnant by the end of each day, and I can’t get pregnant? He said, “let’s test you for Celiac Disease.” My antibody test came back positive.
The nurse from the practice called to tell me I tested positive for Celiac Disease and I should adopt a gluten free diet. I said, “that’s it?” I wondered if I should see a specialist or if there was anything else I needed to know to help my body heal. But she said no, a gluten free diet was the treatment. While this is true, there was no discussion about what it meant to be diagnosed with Celiac Disease or to have an autoimmune disease or how to heal my body after who knows how many years or decades of undiagnosed Celiac Disease. This was the first time I decided to trust my intuition and take my health into my own hands. I went ahead and made an appointment with a GI specialist (Gastroenterologist). Good thing I did because I learned the first step to diagnosing Celiac Disease was the blood test (which I did with my PCP), but the second step for diagnosis was a biopsy of the intestine via endoscopy to look for damage and inflammation due to Celiac Disease. Had I adopted a gluten free diet as my PCP recommended without getting the biopsy, I may not have had an official diagnosis since you have to be consuming gluten-containing foods to be accurately diagnosed.
After my endoscopy, I was diagnosed with Celiac Disease and adopted a gluten free diet. I was actually relieved to have a diagnosis so I knew how to treat it. Feeling awful had become my norm for so long that I was excited to see how things would turn around for me. I was also trying to get pregnant, so I thought I would adopt a gluten free diet, my body would heal, and I would get pregnant. That didn’t happen, at least not for a few more years. While many of my symptoms did go away or lessen with a gluten free diet, such as the bloating and some digestion issues I struggled with for years, most of my other symptoms persisted. Because I was now in my late thirties and desperately wanted to get pregnant, I began learning everything I could about autoimmune disease and inflammation so I could help calm my immune system and increase the likelihood I could get pregnant and have a healthy pregnancy.
The more I learned about autoimmune disease and inflammation, the more frustrated I became I didn’t receive the proper or adequate education upon my diagnosis. At the time, the focus was almost entirely on adopting a gluten free diet, which is obviously helpful because that is the known treatment. However, there was no focus on how to heal my body from the chronic state of inflammation I had been in for years, how to heal my gut, how I could support and calm my immune system, not only now, but moving forward. There was no discussion about how having one autoimmune disease made me more prone to developing another one. For people with Celiac Disease, the later the age of diagnosis, the greater the risk of developing another autoimmune disease. People diagnosed over the age of 20 have a 34% chance of developing another autoimmune disorder (Celiac.org). I was diagnosed at the age of 35. There were holes in my care that I had to learn were there and I began to see the comprehensive big picture. Consequently, I took things into my own hands and began doing a ton of research and working with other practitioners who could help me.
Being diagnosed with Celiac Disease changed the trajectory of my life because it allowed me to further understand my body, how to care for it, and sent me down a healing path at a time I so desperately needed it. Further exploration helped me learn managing my autoimmune disease was not just about avoiding gluten. While eliminating gluten is the only treatment to prevent further damage from exposure, there is a lot more to managing autoimmune disease. I began a journey of learning how to restore balance in my body and my life, and overtime, I finally felt better than I had in decades – and, we eventually got pregnant (with the help of modern medicine). If I wasn’t struggling to have a baby, who knows how many more years would have gone by before this piece of the puzzle was uncovered. This was one of the many beautiful gifts of our journey to fertility.
Celiac disease is a serious autoimmune disease that occurs in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine. It is estimated to affect 1 in 100 people worldwide. Two and one-half million Americans are undiagnosed and are at risk for long-term health complications (Celiac.org).
Celiac Disease can be difficult to diagnose because it affects people differently. There are over 200 symptoms and children tend to have different symptoms than adults. Celiac Disease is hereditary. Parents, siblings, and children of a first-degree relative with Celiac Disease have a 1 in 10 risk compared to 1 in 100 in the general population (Celiac.org).
If you suspect you have Celiac Disease, there are two ways to find out: testing and diagnosis. Who should get screened? Children over 3 and adults who are experiencing symptoms, first degree relatives of people with Celiac Disease, and anyone with an associated autoimmune disorder (Celiac.org).
My journey with Celiac Disease has taught me to trust my intuition, especially when it comes to my health, to ask questions, and to advocate for myself. Treatment and healing doesn’t end with a Celiac Disease diagnosis; it is just the beginning.
