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How careful do celiacs need to be? The question of: at what point is someone being vigilant vs. hypervigilant with celiac disease? With hypervigilance being one of the greatest indicators of poor quality of life with celiac disease, how can we still be careful to avoid gluten without it holding us back?
When determining how careful celiacs actually need to be, we need to look at the difference between hypervigilance and vigilance.
Hypervigilance is the extreme obsession over gluten-free living. I like to explain it to people as acting from a place of fear rather than caution. Signs of hypervigilance include avoiding foods, social events, dining out, and more. Instead of learning how to cope with a situation, with hypervigilance you just avoid it.
And we know, hypervigilance is directly tied to poor quality of life. In the case of how careful do celiacs need to be, celiacs need to be vigilant, not hypervigilant.
Vigilance is different from hypervigilance because you still act on your gluten-free needs but you’re acting out of a place of caution, not fear. So you assess situations and you take precautions to protect yourself while still participating in everyday life.
I’ll leave a graphic below to highlight some examples of hypervigilance and vigilance.
When it comes to the question “how careful do celiacs need to be?” Many people lean on hypervigilance. This is understandable as often people with celiac lack proper follow-up care and education on celiac-safety.
This can lead to people misunderstanding what exactly is celiac-safe and what is taking things beyond that. And for some, they understand general celiac-safety and choose to take safety measures beyond that as a personal choice.
For me, I try to help my clients live the least restrictive lifestyle as celiac-safely possible. This means hypervigilance is off the table. Because hypervigilance as it often shows up with celiac not only impacts quality of life as proven in the research, but it also can impact physical health, especially for those where hypervigilance does not feel like a choice but instead, their only option.
Let me explain: hypervigilance often presents as extremely restrictive behaviors with celiac. These behaviors can include: avoiding all processed foods, only buying foods with a certified gluten-free claim or certification, extreme stress around food, anxiety around food and more. All of these behaviors can negatively impact someone’s health.
Building on the conversation of health risks of being too careful with celiac disease. A key point here when addressing the question of “how careful do celiacs need to be?” is ensuring that precautions don’t impact diet diversity which can worsen not improve malnutrition from a damaged small intestine and delay healing.
If you’re avoiding all processed foods, for example, you risk a lack of diversity in the diet. This includes eliminating important gluten-free whole grains with essential nutrients for gut health with celiac disease. Another example of the harms of this avoidance is it can eliminate frozen and canned fruits and vegetables that make balancing a gluten-free diet easier.
But it’s not just avoiding processed foods that can impact diet diversity. If you’re only buying food with gluten-free claims or certifications, this can further restrict diet diversity. Not only do many people not have access to grocery stores with a large presence of gluten-free claimed/certified foods but these foods also carry a higher price tag, with an added cost of 183% higher than wheat-based alternatives found in 2019. Something that many struggle to accommodate.
And when talking about “how careful do celiacs need to be?” it’s important to address what no one wants to talk about, and that’s the risk of eating disorders. Being hypervigilant, or making fear-based decisions, is disordered eating. It disrupts daily life without medical cause.
While hypervigilance, as discussed above, can cause lack of diet diversity, not only impacting ability to heal but also restore nutrient deficiencies, it also can put people at higher risk for eating disorders. Something people with celiac are already at as high as a 19% increased risk for.
It’s unnecessary restrictions imposed by hypervigilance that risk putting someone in the binge restrict cycle, which can be a vicious spiral downward into the negative impacts of diet culture on celiac disease or eating disorders.
And risk for full-blown eating disorders with celiac disease is nothing to roll your eyes over. Might I remind anyone who is writing hypervigilance off as harmless, the it’s role in eating disorder development is scary. As eating disorders are one of the most deadly conditions in the world, with up to 20% of all untreated eating disorders resulting in death. So this is nothing to joke over.
Lastly, when discussing “how careful do celiacs need to be?” it’s important to talk about the very real implications fear and stress have on nutrition.
If someone is afraid to eat, this can directly cause them to avoid eating. Avoiding eating can cause them to go long periods of time without food. These large gaps in time between eating can disrupt hormones regulating hunger/fullness cues, cause the digestive system to slow, influence the person to eat overly large meals when they do eat and thus, play a role in continued symptoms such as bloating with celiac disease.
Additionally, if someone is not eating enough because of fear, this can cause them to continue to feel tired all the time as their body doesn’t have enough energy or nutrients to function. Additionally, the slowing of the digestive system (which happens as the body tries to give it enough time to pull all the nutrients it can out of food) and also lead to constipation with celiac disease.
And we haven’t even addressed the harm stress around food can have on nutrition. See your body isn’t able to tell the difference between stress over food safety and stress over being attacked by lion. So when you’re stressed, your body redirects energy from your digestive system to your arms and legs for survival.
This means that energy used to properly digest food and keep the digestive system moving appropriately, is currently being used for other functions. Directly impacting your ability to properly absorb nutrients.
All of this to say, fear-based decisions around food, AKA, hypervigilance with celiac disease, is serious. Not just because it risks diet diversity, or the development of one of the most deadly conditions in the world, but because it also risks the basic functioning of your body: digestion.
Celiacs need to be careful enough to avoid gluten and cross-contact with gluten. This means not only should celiacs make sure what they are eating has no gluten ingredients but also has not come into contact with gluten ingredients.
The same goes for anything that is coming in or around the mouth. So that means kissing, lip products, toothpaste etc.
However, it is possible to live a life with celiac that avoids gluten and cross-contact without being hypervigilant. The tricky part here is, how do you do that when we live in a gluten-dominant food system and culture. In other words, how can avoid hypervigilance with celiac disease when gluten is quite literally everywhere?
The answer: you avoid hypervigilance by having a solid foundation in celiac-safety and addressing your relationship to food.
And if you don’t know what to look for, if you don’t know how to read a food label for gluten, how to dine out safely, how to travel and stay in other people’s kitchens, etc.
I cover everything you need to know to start staying celiac-safe RIGHT NOW in the Celiac Crash Course.
(p.s. If you’re second-guessing yourself with how strict you are with celiac, you need this course).