Celiac Guilt and Celiac Shame

A popular post of mine on social media is the graphic I made stating that celiac guilt and shame are liars. I’ll show it down below.

With a traumatic disease like celiac disease, it’s easy to feel guilty or shameful. After all, our diet is completely different from the societal norm. Not only that, but we need the people around us to support us in this very different way of eating.

So the pain of these emotions may fester; eating way at our confidence to care for ourselves. And it’s important to understand, guilt and shame can be a normal response to having dietary needs far outside the normal, and they can sabotage us. Often leading to celiac burnout, exhaustion, and even disordered eating.

So what is Celiac Guilt and Celiac Shame?

I define celiac guilt as the feeling we have when we’re worried about being a burden to others, or that we didn’t do enough to avoid gluten and that’s why we are sick. It typically has undertones of societal pressures to not take up space (physically, socially, emotionally etc.) and to be agreeable.

I define celiac shame as the belief or feeling that celiac changes our worth in some degree. It’s often worsened by mocking, disbelief, and jokes around celiac disease. And it generally is a stronger negative emotion than celiac guilt.

Here’s the thing, it’s easy to be hard on ourselves, it’s easy to let our need for accommodations convince us that we are unworthy or that we aren’t doing enough. And it’s important that we address these painful emotions because they can sabotage our overall celiac healing journey.

The Impacts of Celiac Guilt and Shame

It’s easy to feel guilt and shame with celiac when: you didn’t get the proper gluten-free diet guidance from your provider, you lack gluten-free lifestyle support from loved ones, and you overall feel overwhelmed and confused.

But let me be the one to tell you: celiac guilt and shame are liars.

These emotions can be a natural response to no longer fitting into the cultural norm when it comes to food.

AND it’s important that as we are working to build confidence with celiac disease and gluten-free living that we are unpacking the shame and guilt we feel around our celiac management.

It’s important because these emotions can stop you from: dining out with friends, attending parties, trying new food, feeling included, feeling understood, and feeling accepted.

Addressing Celiac Guilt and Shame

Addressing celiac guilt and celiac shame is important because these emotions can stop you from living your life to the fullest. For example, guilt can taint a beautiful celiac-safe dinner a friend planned for you. And shame can stop you from sending food back when it comes clearly contaminated with gluten.

These feelings can be normal responses and coping skills can help alleviate some of these feelings. 

ACTIVITY: Are guilt and shame holding you back? Pay attention to the thoughts you have around celiac over the next week/day and tally the ones that are negative and positive.

Once you are aware of how these emotions are holding back, you can work to unpack those things. Noticing is the first step and addressing is the second.

Celiac Guilt and Celiac Shame can Hold You Back! This blog post talks about how to cope with these normal responses to celiac disease - Tayler Silfverduk, RD

Action Steps to Addressing Guilt and Shame

Some ways to address the shame and guilt include:

  • Ask yourself “what would a friend say to me in this situation?”. You deserve the same kindness.
  • Forgive yourself. If you’re upset about a glutening or not speaking up, give yourself grace. You deserve kindness as you grow into your new celiac life.
  • Recognize no one is perfect. Whether it comes from needing special accommodations or from making mistakes, no one is perfect. Everyone needs something and everyone makes mistakes.
  • Give yourself permission to do the things that might make you feel guilt or shame (as long as they are celiac-safe – I’m not saying to intentionally gluten yourself here). So if you feel like the guilt of needing a host to take extra precautions when having you over is stopping you from socializing, then give yourself permission to have them accommodate you. Literally, tell yourself “I’m giving myself permission to be accommodated” or “I deserve to be accommodated”.
  • Unpack the story around the guilt and shame. Why do you feel guilt? Why do you feel shame? How are these emotions serving you and how can you start to rewrite these beliefs?

As you progress into this I want to say; a mental health specialist can be immensely helpful in this process. Working with a celiac specialized dietitian can also be helpful in untangling your relationship with food from shame around your medical needs etc.

The ultimate point is: you don’t have to feel shame or guilt around celiac. You don’t have to have a painful relationship with your needs and autoimmune disease. There’s a better way.

And if you want help, support groups have been proven to be incredibly helpful in helping people deal with the emotional weight of huge life changes. This is why I run a Virtual Celiac Support Group where I meet 4+ times a month over zoom with group members to a safe space to share, ask questions (without shame or fear-mongering), and to find camaraderie

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