It was 1984 when I first had difficulty digesting gluten. At least, that is my guess. I was diagnosed with celiac disease 27 years later, though.
Throwing up or getting sick was a time-and-again thing in my life. Yet as a baby, my mom tells me I had a hard time digesting breast milk, formula, and most of the food I ate. By the age of five, anemia prevented me from playing with my friends or eating the things I used to eat for months. I was too weak and under a diet supposed to help, but now I know it was the wrong one. I was eating gluten quite a lot.
I grew up being a skinny child with a bloated belly. My belly would make strange noises like I was always hungry. I was not. It was the opposite - I would not feel hungry for hours, but full. And sick, like I was about the throw up anytime.
As a teenager, I remember having migraines that no medicine would help alleviate the pain. The feeling of being sick to my stomach accompanied me for decades. Even though I was not well, doctors would not find anything wrong with me. My blood tests would show mild anemia, sometimes higher than normal triglycerides, but nothing else seemed out of the ordinary. The worst for me was the feeling that the doctors were not taking me seriously. None of them cared to investigate the root cause of my symptoms.
Unusual symptoms for celiac disease
Celiac disease is an autoimmune disorder triggered by gluten in genetically predisposed people. One of the consequences of this disease is damage to the small intestine. However, it is a multisystem disease. It can affect the gastrointestinal tract and other organs and systems, such as the nervous system, skin, and bones.
Diarrhea was the most common symptom raising red flags for celiac disease years ago in Brazil - unfortunately, it might still be true for some doctors. That was not my case. Instead, constipation might have been part of my life, but I had no idea it was not normal not to have a bowel movement every day.
Besides that, as I mentioned above, I was always dealing with migraine, anemia due to low iron levels, body or perhaps bone pain, an upset stomach, and a bloated belly. Add to that lack of energy. It was rare to get a good night’s sleep.
The celiac disease symptoms vary from person to person, and they can range from very mild to severe, lasting for hours or days. It is also possible to have celiac disease without any symptoms but have villous atrophy. According to the University of Chicago Celiac Disease Center, celiac disease can present with as many as 300 symptoms.
The most common symptoms are:
– diarrhea, excessive wind and/or constipation;
– nausea, vomiting;
– stomach pain and bloating, indigestion;
– bone pain;
– hair loss (alopecia);
– infertility or recurrent miscarriages;
– weight loss unexpected and sudden way (but this is not always);
– any combination of iron, vitamin B12, or folic acid deficiency;
– Irritable bowel syndrome (IBS) – the incidence of 1 celiac among every 4 people with IBS;
– growth failure in children;
– neurological (nerve) problems such as ataxia (poor muscle coordination) and neuropathy (numbness and tingling in the hands and feet)
You can download the free e-book Essentials of Celiac Disease and the Gluten-Free Diet to get more information about it.
Another complication in my case that prevented doctors from diagnosing me with celiac disease was my negative antibody test result. Though rare, it happens. Only a proper endoscopy with a biopsy of 4-6 duodenal samples combined with the analysis of symptoms can lead a doctor to obtain an accurate diagnosis, then.
My celiac diagnosis was a game-changer
In 2011, I started losing weight fast and throwing up too often. It was hard to keep food down. I needed help.
The first gastroenterologist I saw did not listen to me at all. Without knowing a thing about my diet and lifestyle, she told me to stop drinking beer and eating processed foods. My body could not tolerate alcohol at all by the time, so I would never drink. And my diet was not that bad. The most processed food I would eat almost daily was chocolate. My mom and I love baking, so we were always trying a new bread or cake recipe - my diet was loaded in carbohydrates and gluten, that's true. But I would also eat a variety of vegetables, fruits, and other real foods.
I was diagnosed with Gastroesophageal reflux disease (GERD) and got a list of medications I should take to treat it. It did not help at all. I got worse after a week in that treatment.
Looking for a more accurate diagnosis, I found a doctor that cared about his patients. I remember him asking about my symptoms at my first appointment and looking me in the eye. He was paying attention to me. Only then he looked at my medical history. We repeated some tests and did another endoscopy with a biopsy to rule out celiac disease.
Weeks later, I got my diagnosis of celiac disease and lactose intolerance. I walked out of the doctor’s office lost but relieved for not being the crazy sick person anymore.
Being diagnosed with celiac disease changed my life. I dare to say it cured my body and led me to a better lifestyle. It was also the trigger to a new passion: nutrition.
From a gluten-free diet to a gluten-free lifestyle
Getting rid of gluten was hard at the beginning. I came from a family of food lovers. We were always cooking, baking, and eating something. As a Brazilian, growing up in a Southern State colonized by Italians and Germans, we had lots of pasta, polenta, lasagna, bread, cuca (a Brazilian crumb cake). Add to that a Sunday family reunion with the traditional Brazilian Churrasco, followed by an afternoon coffee full of cakes, pies, bread, cheeses, homemade jam, and so on. Can you imagine how hard it was to adapt my new diet to my lifestyle?
I lost count of how many times I ended up in tears seeing everyone else eating the food I loved. In the first year of my diagnosis, I ended up further hurting my body because there were occasions that I would give in to my craving and eat gluten.
As they say, though, life is like a boomerang. Our actions have consequences. Within two years of my diagnosis, I discovered I had osteopenia - a condition close to osteoporosis. I was losing bone mass. From there, I decided to stick to a gluten-free diet without cheating.
Three year later, while living in Ireland, I was feeling sick again. At the time, I was diagnosed with intestinal permeability or leaky gut. The reason? One cannot live in a bubble, and gluten cross-contamination is a big deal for people with celiac disease. I spent six months on a very restrictive diet. I also learned that my problem with dairy was not the lactose. I am sensitive to casein (the milk protein). That was when I realized I needed help to change my habits and nourish my body.
To overcome my dietary restriction, I had support from my family, friends, professional help, and I also got connected with people struggling with similar problems. Yet, I knew I needed more to reconnect with my body. I went back to school to study Nutrition & Lifestyle Coach. I finally understood my body and discovered that my happiness does not rely on the food I eat.
Step by step, I taught myself to appreciate foods that I once despised. I discovered new flavors. Sometimes we get stuck eating the same boring food over and over again. And there are so many options out there. One easy way to increase the variety of our meals is to eat what is in season. We save money and get more nutrients. And this practice aligns our nourishment needs with nature’s cycles.
My two cents
Celiac disease is an autoimmune condition that requires a diet free of gluten for life. There is no cure, and the only treatment is the diet. Once one follows it correctly, avoiding frequent exposure to gluten cross-contamination/cross-contact that activates antibodies, the symptoms should stop, and the gut health should improve.
To accelerate the healing process, aim to eat a diet with naturally gluten-free food such as vegetables, fruits, nuts, seeds, eggs, meat/fish, and whole grains if your body tolerates it well. Pay attention to your body's reactions to the food you eat. Making a food journal can help you be aware of triggers, as some symptoms might appear up to 72 hours after you eat the food.
Highly processed foods are not healthy for anyone in excess. Can you imagine what they can do for someone with high levels of inflammation in the body? People with celiac disease need more nutrients because while recovering from the damage caused to the gut lining, they may not absorb all the nutrients from the food they eat. Avoid high sugary foods or drinks, trans-fat foods like chips and crisps, processed meat that has been smoked, salted, cured, dried, or canned – this includes sausages, hot dogs, salami, bacon, and ham.
The way to sustain health is to choose health-promoting foods that are naturally gluten-free, rich in fiber, antioxidants, and nutrients. And do not forget to ask for help when needed - from a health professional or a support group.