Celiac Disease and Grief - Grieving a Life Without Celiac

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.

Table of Contents

5 Stages of Grief and Celiac Disease

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.

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Stage 1 of Grief : Denial of Celiac Disease

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:

  • wondering if you were misdiagnosed
  • doubting how strict you actually need to be
  • picking and choosing rules on how to stay safe with celiac
  • intentionally eating gluten occasionally
  • intentionally eating gluten in general
  • not being careful of cross-contact because it can’t be real – right?

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.

Stage 2 of Grief: Anger

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:

  • wondering “why me”
  • feeling like your diagnosis is unfair
  • anger with others who can eat gluten
  • anger with your diagnosis in general
  • jealousy of people eating gluten
  • frustration with the lack of awareness in the world

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.

Stage 3: Bargaining

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:

  • living by the assumption that “just one bite won’t hurt”
  • living by the belief that “cross-contact isn’t that serious”
  • resolving that you’ll get serious about living gluten-free tomorrow, or next week, or next month
  • having the occasional “cheat” meal
  • thinking “if only I knew I was at risk before…”
  • thinking “if only I knew to be tested for this before”

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.

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Stage 4: Depression

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:

  • regretting not eating that extra slice of pie or cake at all of those parties
  • regretting not eating any pie or cake in general
  • wishing you said yes to certain foods more
  • missing certain foods
  • missing different aspects of your life that will forever be changed

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.

Stage 5 of Grief: Acceptance of Celiac Disease

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:

  • understanding the need to live gluten-free
  • honoring you body by living gluten-free
  • buying new gluten-free foods to explore (with an open mind)
  • not intentionally eating gluten but instead, intentionally trying to avoid it all the time
  • value of health over eating gluten (avoiding long-term health complications becomes more important than eating gluten)
  • not attacking your body or accusing it of betrayal

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.

why grieving and Celiac Disease is important

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:

  • lets you honor your emotions and prevents you from bottling them up
  • lets you honor your struggles
  • helps you move towards a place of acceptance of a gluten-free life by first accepting your current feelings around it
  • lets you process what’s happening to you, the journey that got you there, and the journey ahead

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?

Common Things People With Celiac Grieve

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:

  • Any gluten-filled treat – I know personally, I miss being able to grab donuts whenever I want.
  • Social life – While you can still socialize with celiac disease, the way we socialize looks different and it’s important to grieve that. If you need help with learning how to socialize safely with celiac, I give you simple strategies to do so in the Celiac Crash Course).
  • Traveling and enjoying authentic foods during your trips – Often a celiac diagnosis can feel like the end of travel. However, just like socializing, you can travel the world safely with celiac disease, it’s just going to look different. I also give you simple tools and strategies to this in the Celiac Crash Course too if you need them.
  • Casually sharing a meal – Gone are the days where you can share a meal carefree with your loved ones. While you can still share meals, this usually takes more work and preparation to make sure you’re staying safe.
  • Free office food – Your coworker brought in birthday cake for another coworker, or your boss brought in donuts for everyone and you’ve never felt so excluded. Grieving this loss of participation at work is important and also let me empower you to advocate for inclusion via ADA accommodations.
  • Convenience & spontaneity – With celiac disease, things require more planning and that’s a huge change to adapt to. While you can still find ways to be spontaneous and find convenience, it again, is going to look different.
  • A normal college life – Campus life is going to look different from everyone else because you have to be careful in the shared kitchens and you’ll have limited food options on campus. However, don’t let celiac hold you back from enjoying college life to the fullest, it will look different but it’s still possible.
  • Easily eating out at restaurants – When it comes to celiac, the safest food to eat is food you’ve prepared. And trusting and educating a stranger on how to cook safe food for you is cumbersome and scary. That said, dining out calmly and safely is possible (I do it quite often) so if you need help with this, check out my Gluten-Free Dining Course.

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.

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