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Celiac disease and grief are not talked about often enough.
Finding out you have celiac disease brings up a lot of different emotions and responses for everyone. Some people are relieved to finally have answers for their digestive woes. Other people are shocked because they never even knew something was wrong.
Regardless, often people diagnosed with celiac disease fail to grieve a life a without an autoimmune disease. Because a celiac diagnosis, is a lifelong diagnosis. People don’t grow out of celiac disease, they live with it for life, which means they have to live gluten-free for life.
And living gluten-free doesn’t just mean eating gluten-free, no. Food is more than that, food is culture, tradition, memories, family, comfort, pleasure, and more. Food isn’t just fuel and shifting our diet from the cultural norm to the culturally rare, disrupts a lot.
This is why it’s so important to address celiac disease and grief. It’s why it’s so important for people with celiac to grieve a life without an autoimmune disease because, for the rest of their lives, they’re going to be living gluten-free with no days off.
So how do you grieve? What does grieving look like? I’ll be exploring that using the Kubler-Ross 5 Stages of Grief model which states that there are 5 stages of grief; denial, anger, bargaining, depression, and acceptance.
As we discuss these 5 stages, what they mean, and how they might present when grieving celiac disease, please keep in mind these stages are not a 1 way only process.
Meaning, you can go from Stage 1 to Stage 5 and down to Stage 3 at any point. To be brief, the process of grieving is not linear and some days might be harder than others.
I also want to acknowledge that none of the stages of grief have any moral value. You are not good or bad for experiencing anger vs. acceptance when grieving celiac disease. What ever you are experiencing is valid, do not feel guilt or shame for them, instead invite curiosity and explore them fully when it’s safe to.
The first stage of grieving celiac disease is denial. Denial is often the first reaction to someone finding out they need to live gluten-free.
Additionally, people often find themselves coming back to this stage often on their grieving journey, especially if there are unresolved questions around their diagnosis.
Denial helps numb shock and other emotions that might be too overwhelming to address at the moment.
Denial of celiac disease might look like:
When moving through denial it might be helpful to speak with your doctor or celiac specialized dietitian about your concerns or doubts. Especially if you’re doubting the necessity of strictness related to a gluten-free life for celiac, speaking with a celiac-specialist could help too.
Anger is another stage of grief with celiac disease. It’s often used as a band-aid to hide the open wound of the true pain we are facing. It can be used to avoid experiencing what we are really feeling by deflecting it through anger.
With celiac disease, people might be angry at their diagnosis, angry at their doctors for taking so long to be diagnosed, and angry at people who can eat “normally”.
Anger with celiac disease might look like:
Personally, 10 years in and I still experience what I call “gluten rage”. This is what I describe to be unrealistic rage that builds up when watching someone eat gluten.
This usually happens when my partner eats french fries from fast food restaurants or cake in front of me. Which speaking of french fries, if you’re looking for places to buy gluten-free french fries in the USA, check out this post.
Another stage of grief with celiac disease is bargaining. Bargaining is often used as an attempt to post-pone living gluten-free. It can also be used to try to “regain” control after feeling helpless by trying to find ways we could of prevented our current reality.
Bargaining with celiac disease might look like:
If you notice you are struggling with the bargaining stage of grief with celiac disease, I strongly encourage you to find help. Especially if you find yourself often engaging in unsafe behaviors around gluten.
A celiac specialized dietitian or GI psychologist are both great resources for helping you stay gluten-free, even when in the bargaining stage of grief.
Next, depression can be a sign of grief with celiac disease. Depression is often when we start to let ourselves do deeper work with out emotions. You don’t want to get stuck at any stage but if you are especially stuck here, you may want to consider a mental health specialist who specializes in chronic illness.
In the depression stage with celiac grief, you might start to regret all of the foods you never let yourself have before diagnosis, you might start grieving the foods that will never be the same, or the ways your life will never be the same.
The depression stage of celiac disease grief might look like:
When experiencing this phase, be sure you have a strong support system to lean on. It’s easy to want to isolate yourself in these moments but seeking support is important.
If you don’t have anyone around you who gets it, consider joining my Virtual Celiac Support Group. We meet over zoom, and it’s a safe place to share your feelings with other celiacs who just get it.
And finally, acceptance is the last stage of grieving a celiac diagnosis. It’s not necessarily a place of “graduation” from grief, but a place where you might find peace with certain aspects of your circumstance – not to say that the peace might be broken in another day or time. Remember, grief is not linear and you might find yourself experiencing different stages at different times.
The acceptance stage is said not to be a place of happiness or sadness, but a place where we are no longer at war with our circumstances.
Acceptance with celiac disease grief might look like:
When we accept our diagnosis, we let go of the resistance we might feel when living our new lifestyle. This doesn’t mean zero resistance will show up in our life, but it means that things feel more routine.
It might seem easier to avoid your feelings and push through a celiac diagnosis, but if you don’t take time to properly grieve you might have a hard time moving forward. Grieving takes time, grieving is uncomfortable, and grieving is necessary.
You have to change the entire way you live because of a celiac diagnosis, that’s a lot to deal with and grieving can help because it:
I know it’s hard to let yourself feel the difficult emotions that come up after a celiac diagnosis, and it’s important nonetheless. Take a minute and reflect: have you let yourself grieve your celiac diagnosis?
There are a lot of things people may grieve when it comes to gluten-free living with celiac, and these are just some of the things you might find you’re grieving:
There’s a lot to grieving a celiac disease diagnosis and if you’re feeling stuck in the grief, consider reaching out to a GI psychologist for support.
Additionally, group support has been researched to be incredibly effective at improving outlook for chronic diseases, so if you feel you might benefit from being around other people with celiac who just get it, check out my I give you simple strategies to do so in the Celiac Crash Course.
I just talked a lot about grief and ways it shows up but the most important part of all of this is, how is grief showing up for you? Comment below a part of celiac life you’re grieving.