HBlissLearning I had Celiac Disease (CD) two weeks before my 17th birthday wasn’t exactly on my wish list. My whole life felt like an endless stomach flu. Consistent testing and lab work never showed any problems and going from doctor to doctor was exhausting and depressing. My parents and I were desperate for a reason or explanation for what was happening. We found an amazing gastroenterologist who suspected right away that I was dealing with Celiac Disease. With that diagnosis, my life was altered forever and at the same time saved.
Celiac Disease is often labeled a gluten “allergy” but is actually an autoimmune disease. Our immune system is an extremely important aspect of our body; it helps fight off bacteria, viruses, and infections, just to say a few. An autoimmune disease is when the immune system turns around and attacks the person’s own body. Regarding CD, every time someone with Celiac eats gluten, their immune system begins to aggressively assault their small intestines.
Our small intestines have little finger-like structures called villi that line the organ. The villi assist in the absorption of nutrients, then sends them into the bloodstream and continues their journey to where they’re needed. For people with CD, gluten flattens the villi which lead to serious health issues.
Like many autoimmune diseases, CD has a genetic component that people can inherit. While some people carry the same gene mutation, it doesn’t guarantee they will develop CD. There are a few other reasons that may contribute to a Celiac diagnosis; experiencing a serious stress on the body (e.g. pregnancy, surgery, an illness, or an extremely emotional episode) can activate the gene mutation that causes CD.
During the summer between 8th grade and freshman year of high school I had two different illnesses that I suspected triggered my CD. First, I contracted a case of Fifth’s disease (parvovirus). The most common mark of this virus is “distinctive facial rash/bright red rash usually showing up on the face”. Joint pain is often a symptom. I don’t recall if I had the rash, but I distinctly remember severe joint pain. I went to bed perfectly fine and woke up in the morning barely able to walk and with limited mobility. It took time for the joint pain to heal. At the end of August, I developed another virus. I had a high fever, and it took a while to heal. Throw into the mix an extremely stressful, upsetting and traumatic transition into high school and all of the ingredients were there for my body to unlock the already present gene mutations. While it requires more research, a theory that the bacteria that lives in our digestive tract that assists us in digestion may also be related to CD happening.
Many symptoms stem from CD, making it sometimes difficult to make a solid diagnosis. While similar symptoms are often found in most people, others don’t experience these well-known signs. Classic symptoms affect the digestive system. People can experience bloating, gas, constipation, diarrhea, nausea, vomiting, and pain in their abdominal area. Mood changes like depression and anxiety, weight loss stemming from malnutrition and malabsorption, stunted growth (in children and adolescents) and fatigue are otherwell-known symptoms. The lesser-known indications of CD include joint pain, canker sores, anemia, fatigue, and various neurological problems (e.g. migraines, seizures, and neuropathy). I fell into the classic symptoms category – daily nonstop diarrhea, steatorrhea (excess amount of fat in your stool), bloating, and a chronic burning sensation before and after eating. My growth was significantly stunted, and puberty was delayed. There are people with CD that are asymptomatic and have no reaction when they eat gluten. While a small part of me is jealous of this, it doesn’t mean that these people aren’t experiencing damage to their small intestines. It can be significantly more difficult for asymptomatic, or as it’s sometimes called “silent” Celiac to be diagnosed. A lot of the time, it is found out during other medical testing.
As of this moment, the only treatment for CD is to follow a lifelong gluten free diet. This can seem deceptively simple, but can in fact be stressful,overwhelming, and even traumatic. It’s commonplace for many people to think that going gluten free just means don’t eat bread (yes, I have heard this exact line from people who weren’t aware of what gluten is exactly).
Adjusting to a gluten free diet alters your entire lifestyle. You will need to be able to recognise and understand the different types of gluten sources. Gluten is found in the grains of wheat, barley and malt. While gluten is commonly found in flour-based foods, it can also appear in other foods like sauces, dressings, soups, candies and beverages. Becoming knowledgeable about how to read labels is very important. Learning how to cook and bake gluten free recipes can help offermore food choices than you might find in restaurants and/or stores. When going out to eat, I always try to look at the restaurant’s menu online ahead of time. This allows me to see if there is anything safe to eat.
Social situations involving food can be challenging. You may need to bring your own food or discuss your dietary needs with hosts. Do your best to gather information about what food and beverages will be at the event. I got in the habit years ago to eat beforehand and carry snacks with me in case I get hungry, and my options are limited. Do your best to not feel that you are being high maintenance or “extra”. This is a serious disease, and you need to do whatever is needed to stay safe and healthy!
A gluten-free diet may lack certain nutrients like fiber, iron, and B vitamins, commonly found in gluten-containing grains. Nutrient-dense foods like fruits, vegetables, legumes, nuts, and seeds become essential. Always speak with your doctor/healthcare provider/ registered dietitian before taking supplements or changing your diet.
I want people to know you can still have a full and enjoyable life while being gluten free, it just takes some time and adjustment. There may be an emotional adjustment period, as going gluten-free can initially feel restrictive. Going gluten free as a teenager was difficult. It was upsetting being around my favorite foods that were now off limits. It took time to acclimate to this new way of living. What helped the most was how much my health improved. Within a few months being gluten free, I started feeling significantly better. I finally started to gain weight and properly go through puberty. While I sometimes miss gluten food, not being so sick all the time, is well worth the sacrifice.
Julia Van Der Sluys
Dr Elaine Cebuliak
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