First, let’s take a moment and let the weight of the title of this post “Celiac Disease is Traumatic” sink in. Because it’s true, the journey to a celiac diagnosis and managing celiac are both traumatic.
Dictionary.com defines trauma as “a deeply distressing or disturbing experience”. There’s a lot of trauma with celiac disease because there is so much to be distressed and disturbed about. Things like:
Celiac disease is traumatic because the way you interact with the entire world has changed. How you celebrate, participate in traditions, relationships, socialize, cultivate safety, connect with others and beyond… all that has changed. And that is distressing and disturbing for many celiacs.
Because celiac disease is traumatic, we see a lot of trauma responses in celiacs as a protective mechanism.
There are 4 suggested trauma responses: fight, flight, fawn, and freeze and you can see all 4 of these trauma responses in celiacs.
I say all of this with a lot of love and compassion. If you resonate with any of it, first, I’m sending a big virtual hug. And I want you to know, I see you, and I stand with you. Know that these trauma responses are normal protective responses to a traumatic diagnosis like celiac.
And if you’re struggling with some of these trauma responses with celiac disease; if you’re afraid of food, skipping meals because it’s easier, distrusting of providers, and battling the desire to control your body in the midst of celiac trauma…
There is a better way…
Diet culture magnifies how traumatic celiac disease is. That’s because diet culture and celiac disease are so heavily intertwined with each other that traumas of diet culture often bleed into celiac trauma.
First, diet culture invites people into the business of our body and diet. Making it socially acceptable to publicly judge our body and the food we eat. Using it as evidence to doubt or believe us when truly it’s none of their business.
Second, fad diets act as a barrier to the general public understanding medical dietary needs like going gluten-free for celiac. Thus, spread doubt and disbelief around out condition and needs.
Additionally, fad diets promising cures of symptoms and total prevention of autoimmune disease imply that those struggling with celiac might be at fault. Fact: you are not at fault for your celiac disease.
Furthermore, diet culture magnifies the trauma of celiac disease but promising that if we give perfection we will be perfect. Implying that if again, if we get sick we are some how partially at fault.
Lastly, diet culture offers way to distract you from the pain of a diagnosis that literally changes how you interact with the entire world. Offering a false sense of control to soothe the fear and stress of adapting to a world not built for you.
Celiac disease is traumatic and there are some ways to cope with it. While the trauma responses are a normal reaction to trauma, there are more helpful ways to move through the trauma. Below are some ideas to help!
A part if coping with celiac traumas is making sure you’re letting yourself grieve celiac disease and the life you had before it. Because we know celiac is traumatic, because know so much changes, it’s important we are moving through these emotions and not avoiding them.
A GI Psychologist is specialized in the mental health impacts of gut conditions and may be able to guide you through this. Especially if you feel like you’re getting stuck in the grief. And make no mistake, getting stuck can be detrimental to your health, so getting help when you need it is essential.
As I mentioned, there are many ways people respond to the traumas of celiac disease, many of which are unhelpful. Building a coping skills toolbox with things that can help you when you’re feeling angry, sad, and or overwhelmed with celiac disease can be helpful.
Again, a GI Psychologist can really help flesh out this toolbox. Some things to consider adding to it include, grounding techniques to prevent stress from worsening symptoms. A gluten exposure recovery plan to help you take care of yourself when you get glutened and anything else to help you self-soothe in stressful moments.
When coping with celiac trauma, it is essential you are practicing self-care. Self-care is important with celiac disease because it is traumatic, because there is so much to grieve, and because managing celiac requires more work than just living life normally.
Self-care can be as basic as you want, including brushing your hair, showering, changing into clean clothes. Or self-care can be as complicated as you want, including bubble baths, solo vacations in the middle of the woods, etc.
The importance here is that you are making time to refill your cup. Because as a wise person once said, you can’t pour from an empty cup, so make sure you’re refilling it often.
Often when coping with trauma from celiac disease, we can turn to trying to control or obsessing over food and our body. While staying gluten-free is essential to celiac-safety, letting this management take over and dictate your life is not helpful.
Consider working with a Anti-Diet Celiac Dietitian to help make peace with food, your body and gluten-free needs. So that overthinking, obsession, the overwhelm and fears don’t take over your life with celiac disease. There’s a better way to cope with food and your body.
Don’t carry the burden of celiac traumas alone. Peer and social prescribing has been identified to help people with well-being in many chronic and mental health conditions. It can be isolating to feel and face these emotions alone.
Join a celiac support group. No one will understand you best than those who’ve been through the same thing. They also can be helpful in sharing coping skills, strategies to making gluten-free life better, and more.
If you’re looking for a peer support group, I run one. Learn more about my Virtual Dietitian-Led Celiac Support Group here.
Lastly, to minimize celiac related trauma, be sure to priortize rest after stressful events (if it feels safe to). Prioritizing rest can prevent celiac burnout.
Things like attending parties and restaurants can be draining. It’s essential to rest in order to make sure you’re able to do them in the future. As you learn to manage and cope with celiac, you may find your tolerance for these events increases, but try not to overwhelm yourself. Go slow, as you build up your celiac safety knowledge and skill.
And if you need help with learning everything you need to know with celiac-safety, check out my Celiac Crash Course!
On a final note, the traumas of celiac disease are serious. Changing the entire way you live and interact with food in a food system that was not built for you, is hard. If you need help with navigating coping with this, please don’t delay reaching out for help.
Unhelpful ways of coping with celiac trauma can delay healing, worsen symptoms, and lower quality of life. I urge you, if you find yourself reading and relating to much of this blog post, take this as your sign to reach out for help.
And if you’re trying to tell yourself “well I’m not struggling enough” or “there are people struggling more than me”, know that other people’s trauma does not credit or discredit your own.
Your feelings are valid as they stand. Your struggles are valid right now. And you deserve help regardless of the status of others.