Here’s a question that you probably don’t consider every day – how does celiac disease impact a person’s mental health? In honour of Celiac Awareness Month (which is ending today!) I wanted to explore this idea a little bit on the blog.
So, what is celiac disease? According to the Canadian Celiac Association, celiac disease is “a medical condition in which the absorptive surface of the small intestine is damaged by a substance called gluten. This results in an inability of the body to absorb nutrients which are necessary for good health.” And they say it is estimated that 1 in 133 Canadians has this illness. Untreated celiac disease can lead to malnutrition, loss of calcium and bone density, reproductive issues like infertility, greater risk for cancer and other effects.
I did some research into the link between mental illness or mental health issues and celiac disease. What I discovered was interesting. I read about a Danish study that found having celiac disease increased the risk of developing a mood disorder by 91%. Additionally, German researchers found that women with celiac disease on a gluten-free diet are at higher risk of anxiety than women without celiac disease. Another Danish study found that people with autoimmune diseases, like celiac disease, were 45% more likely to be diagnosed with schizophrenia. In general, having nutritional deficiencies caused by celiac disease has been shown to lead to depression. And some patients have been able to improve their mental health issues by taking on a gluten-free diet.
I spoke to three people (Aalia, Savannah and Sumeet) about their own experiences with celiac disease to understand how their diagnosis and new lifestyle has impacted their mental health. These are people without a diagnosed mental illness. I wanted to get some first-person, direct anecdotes on what it is actually like to experience celiac disease, instead of just re-sharing what I’ve read on the Internet.
With any illness, the diagnosis itself can have a huge impact on the mental health of the affected person. Sumeet expressed that he had feelings around the fact that his celiac disease would change his life dramatically. “Immediately, I felt like my life would be different now that I must contend with this diagnosis, having to adjust it around the disease.” He also shared that he had additional feelings of relief. “I finally got an answer to why I had felt awful for most of my life, always exhausted, bloated, constipated, and feeling gross. Now, at least, I have hope and a sense of how to alleviate serious and long-standing health concerns.”
“Immediately, I felt like my life would be different now that I must contend with this diagnosis, having to adjust it around the disease.”
For Savannah, she also experienced some relief. “When I first learned that I might have celiac disease, I was relieved to know that all my symptoms were not in my head. It’s easy to feel shrugged off by a medical professional when you talk about drowsiness or stomach pain – it could be so many things. I was glad to have something to hold onto.” Despite the relief, it was definitely a hard transition at first. She was really lucky to have a supportive family, particularly her Mum who learned a lot about it. “Gluten hides in almost everything! It took a lot of work and help from other celiacs to start to get on the right track.” It’s a lot easier to deal with now. While food with gluten can be really tempting, Savannah has become skilled at saying no so that she won’t get sick. “I’ve worked so hard and tried so many things to get healthy that it’s never worth it to throw it all away. ”
When Aalia was diagnosed with celiac disease, she felt horrible. “My entire diet was pretty much bread-based so it was a huge, huge adjustment.” For Aalia, the new diet would have a huge impact on her lifestyle. She was diagnosed just a few months before her wedding. “It was even more upsetting because I had just finished going through all the tastings for our menu and the cake. I literally started crying in the doctor’s office because I couldn’t eat my own wedding cake.”
“I literally started crying in the doctor’s office because I couldn’t eat my own wedding cake.”
Sumeet has also learned to be meticulous and vigilant about the ingredients and food that he puts into his body. “There were some oversights occasionally, such as forgetting that vinegar is largely derived from wheat, which made me feel worse because it meant that favourite foods, like certain salsas, were off-limits. Initially, once or twice, I forgot to consider whether food was okay for me to eat, probably because of how much I wanted to eat it, which made my symptoms flare immediately and resulted in me feeling sick.”
While it hasn’t had a permanent effect on her mental health, Aalia found that the diagnosis of celiac disease was quite a big adjustment. In particular, the first few weeks were really difficult. In the beginning, she hated gluten-free food and she actually stopped eating altogether: “I just didn’t enjoy food anymore and so I would rather starve than eat cardboard cookies or cakey bread.” At the beginning, Aalia lost a lot of weight because she was barely eating. She was able to re-gain her love for food again by meeting others with celiac disease and learning about restaurants, stores, and products that could help her eat food she found delicious.
Aalia said that the transition was the hardest part. She had to restock her cupboards with gluten-free products. Grocery-shopping turned into a three-hour affair where she had to read every ingredient in each product. “It was all trial-and-error at first. I called so many 1-800 numbers, companies pretty much knew me by my first name!” Thankfully, she had a supportive family and husband to help her through it.
Sumeet said that he absolutely thinks his mental health has improved significantly since his diagnosis. He feels a lot more blissful and serene. “I experience less nervousness, worry a lot less, and feel like everything will be okay, with my hang-ups showing up less often. I am more confident. Emotionally, I feel positive, cheerful, and steady.”
Savannah also experienced some positive changes to her mental health after going on a gluten-free diet, saying that her mental health was a lot more bearable. Like others with her illness, some of the symptoms of untreated celiac disease for Savannah included mood swings and depression. Savannah did point out that being gluten-free also has some additional stresses to it. “You are always thinking about where your next safe meal will come from. It adds a level of complexity to your day and you always have to be very organized or risk being hungry. At first, this caused a lot of stress and anxiety but over the last couple of years, I’ve found ways to make it much more manageable.”
“You are always thinking about where your next safe meal will come from. It adds a level of complexity to your day and you always have to be very organized or risk being hungry.”
The nutritional deficiencies caused by celiac disease can definitely lead to a lack of energy and a state of permanent exhaustion, which then impacts a person’s mental health. A little after starting a gluten-free diet, Aalia noticed her energy levels were significantly improved. “I was taking less random naps in the day. I could finally stay up past midnight…before I would be sleeping so much, I just thought I was getting old!”
Savannah’s quality of life has mostly been very good since her diagnosis. “I am a much more consciously healthy person now because I understand what’s in food and what my body needs. I try to learn as much as I can about the way the body works and what I can do to make sure I’m my best self through and through.” However, she does note that her celiac disease has changed her life in ways that have been difficult.
For example, traveling is a lot more challenging and exhausting because she needs to be hyper-organized and forward-thinking in order to ensure that she eats food that fits her diet. Another way that her celiac disease has impacted her life is that it has changed how she socializes with her friends and family. She doesn’t get to eat in restaurants as often and sometimes misses out on important social events. “Lots of people can go about their day and not worry about where their next meal comes from, but I always need a plan and that plan usually revolves around meals. I can’t remember what it’s like to just leave the house without a care in the world, without thinking ahead.”
“Lots of people can go about their day and not worry about where their next meal comes from, but I always need a plan and that plan usually revolves around meals. I can’t remember what it’s like to just leave the house without a care in the world, without thinking ahead.”
Sumeet has seen his quality of life significantly improve since starting on a gluten-free diet after being diagnosed with celiac disease. “In terms of my work, I am more productive, focused, and motivated, something that was a big problem for me before since my constantly low energy led to weak stamina that made it hard for me to not get distracted.” Now, Sumeet actually has time to work, socialize, be creative and achieve goals. “Before I was worried that my health problems would ruin my life, not allowing me to achieve stability and security, so my quality of life was adversely affected.”
I just had to ask the three interviewees about this, since it is something that I think about with my own illness. Upon asking, “How do you feel about discussing your celiac disease with other people?”, Aalia, Sumeet, and Savannah all provided answers that reflected a true desire to educate and raise awareness of celiac disease.
Aalia is a big storyteller, so she didn’t have any issues with discussing her own story. Right away after her diagnosis, she started creating vlogs about her journey with celiac disease. She recently created a video series called “Seriously Gluten-Free“, where she profiles different stores and restaurants that serve food that is safe for people with celiac disease. “Sharing my story helps me cope with the disease. It helps me to connect with people in similar situations. When you have a little community of people you can relate to and share experiences with, it helps immensely with mental well-being. It makes me feel like I’m not at all alone.”
For Sumeet, he enjoys explaining the science and symptoms of celiac disease. And Savannah thinks it is important to help clarify what the disease is, how it works, and how people can be supportive to those around them with the illness. “Since being gluten free is much more common now, there’s a lot of misinformation about what it means to be celiac and how it can impact someone with celiac disease if they accidentally eat gluten. I think it’s important to educate the public about cross contamination and being ‘truly gluten free’. Being gluten free for a celiac is not a choice – we suffer from an autoimmune disease.”
“Being gluten free for a celiac is not a choice – we suffer from an autoimmune disease.”
I was pleased that Aalia mentioned mental well-being. I asked the others what they did to engage in self-care for their own mental health. Savannah discussed how she ensures that she is really proactive, engaging in meal planning on the weekends so that she has nutritious lunches throughout the week and using a bullet journal to log her thoughts so life doesn’t get overwhelming. She also relieves stress through incorporating regular physical activity into her schedule, including yoga. Sumeet takes care of his mental health through a variety of activities, including meditation, writing, seeing friends, exercise, volunteering, listening to music, among other things.
All in all, it’s clear that I spoke to some really empowered individuals with a great self-awareness who are thriving in the mental health department for the most part despite the hardships and difficulties that celiac disease brings. I’m sure if I spoke to someone who has bipolar disorder and celiac disease, for example, that their answers would be completely different. What I have definitely learned is that there should be more resources for people with celiac disease so that the transition to a gluten-free diet can be easier and less painful emotionally. There also needs to be more awareness of the disease so that those without it can understand a celiac’s health needs so they can support them properly. With these resources and this awareness, we can ensure that celiac disease has minimal impact on the mental health of those that live with it, for one thing. For another, it can ensure that people with celiac disease can live the lifestyle and secure the quality of life that any human deserves.
Thinking about mental health outside of the context of a diagnosed mental illness is so important. Mental health exists on a spectrum and everyone has a level of mental health, just like everyone has a level of physical health. More resources and mental health support for those with a chronic illness would be quite helpful. Today is also the last day of Cystic Fibrosis Awareness Month, so I must give a shout-out to my friend with the disease. She works hard on taking care of her health, both physical and mental, as best as she can. However, it’s hard to avoid the mental health issues that are bound to creep up. According to Cystic Fibrosis Canada, up to 1/3 of people with a serious medical condition will experience depression. Similarly, the Canadian Cancer Society points out that anxiety is a very common response to a cancer diagnosis.
Just as Savannah said earlier, chronic illness is not a choice and neither are mental health issues. As a society, we need to be more compassionate and more willing to support each other without judgment. Continuing to share stories like Savannah’s, Aalia’s and Sumeet’s, will help erase any stigma or pre-conceived notions about what it means to be sick.
Do you have celiac disease or another chronic illness? Tell me about it in the comments below!