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.

5 Stages of Grief and Celiac Disease

So how do you grieve? What does grieving look like?Β  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.

Stage 1: 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.

grief and celiac disease - grieving a life without an autoimmune disease - Tayler Silfverduk, emotional impact of celiac

Stage 2: Anger

Anger is 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

Stage 3: 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”

Stage 4: Depression

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.

Depression with celiac disease 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
celiac disease and grief - grieving a life without an autoimmune disease - Tayler Silfverduk, gluten-free life, mourning, missing gluten food,

Stage 5: Acceptance

The last stage of the Kubler-Ross 5 Stages of Grief model is acceptance. 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 might look like:

  • understanding the need to live gluten-free
  • honoring the 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)

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

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
  • social life
  • traveling
  • casually sharing a meal
  • free office food
  • convenience
  • a more carefree life
  • spontaneity
  • enjoying traditional foods when traveling
  • a normal college life
  • a life with fewer risks
  • traditions and celebrations

If you’re stuck grieving or you’re having trouble grieving, reach out to a mental health specialist who specializes in chronic illness.

And if you need help with gaining confidence in your gluten-free lifestyle and navigating things like spontaneity with grace, I’m your girl! Sign up for coaching and let’s set up a game plan to help you take back your life!

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