Celiac and Identity

At diagnosis, celiac disease feels like an external thing that happened to you. Over time, it becomes woven into who you are.

But how much should it define you?

The Integration Process

Early Days

At first, celiac feels foreign:

• “I have celiac disease” (something I contracted)
• “I’m dealing with celiac” (a problem I’m solving)
• It’s external, a visitor you didn’t invite

Over Time

Gradually, it integrates:

• “I’m celiac” (identity language)
• It shapes your choices daily
• It affects relationships, travel, career
• It becomes part of your story

The Question

How much should celiac be part of your identity?

• Too little: you may not take it seriously enough
• Too much: you may become defined by limitation

Finding balance matters.

The Dangers of Under-Identification

Not Taking It Seriously

If celiac stays purely external:

• “It’s just a thing I have to do”
• You may not advocate strongly enough
• You may let it slide when inconvenient
• You may not build proper systems

Denial

Some never accept the diagnosis:

• “I’m not really ‘celiac’”
• Continued cheating
• Refusal to adapt lifestyle
• Health consequences follow

Some integration is necessary for good management.

The Dangers of Over-Identification

Defined by Disease

When celiac becomes too central:

• “I’m a celiac” (before other identities)
• Every situation is filtered through celiac
• Your story becomes your disease story
• Other aspects of identity fade

Social Limitation

Over-identification can lead to:

• Avoiding situations that could be navigated
• Leading with celiac in all introductions
• Making it the topic of conversation repeatedly
• Others seeing you only as “the celiac friend”

Catastrophizing

When identity is tied to disease:

• Every glutening becomes existential
• Food anxiety overwhelms
• The disease has power beyond its actual impact

Finding Balance

Celiac Is Part of You (Not All of You)

Acknowledge:

• Yes, I have celiac
• Yes, it affects my daily life
• Yes, it’s part of my story

Also acknowledge:

• I’m also a parent/spouse/friend/professional/etc.
• I have interests beyond food management
• My personality isn’t “person with dietary restriction”

Context-Appropriate Identity

In different contexts, celiac has different prominence:

At restaurants: Celiac is very relevant At work: It’s background (unless there’s food) With friends: Part of who you are, but not the main thing In your spiritual life: One aspect of your embodied existence

Let it be appropriately prominent in each context.

Neither Ignoring Nor Obsessing

Ignoring: Pretending you don’t have it, minimizing accommodations, risking health Obsessing: Everything is about celiac, excessive restriction beyond necessary, anxiety-driven

The middle path: taking it seriously without being consumed by it.

Identity Beyond Disease

Developing Other Aspects

Intentionally cultivate:

• Interests unrelated to food
• Relationships where celiac isn’t central
• Skills and achievements beyond disease management
• A self-concept that includes many elements

The Identity Statement

Instead of: “I’m a celiac person who also does other things”

Try: “I’m a [parent/artist/engineer/friend/person of faith] who also has celiac disease”

Put celiac in its place: significant, but not primary.

Community and Identity

The Celiac Community

Connecting with other celiacs can:

• Provide support and understanding
• Normalize your experience
• Give practical help

But also:

• If your only community is celiac-based, identity narrows
• Balance celiac-specific and general communities

Advocacy vs. Identity

You can advocate for celiacs without making it your entire identity:

• Share information when relevant
• Speak up about accommodations
• Help newly diagnosed people
• AND have a full life beyond advocacy

Spiritual Identity

Deeper Than Disease

Your core identity isn’t “celiac”:

• Child of God
• Created with inherent dignity
• More than your body or its conditions
• Your soul isn’t gluten-intolerant

Integration, Not Definition

Spiritually, celiac is:

• Part of your embodied experience
• An opportunity for certain virtues
• A cross you carry
• NOT the essence of who you are

A Prayer for Balanced Identity

Lord, help me know who I am.

I carry this condition. It’s real and it matters. But it’s not the deepest thing about me.

Help me take it seriously without being consumed. Help me integrate it without being defined.

Remind me who I am beyond my body’s limitations. Ground my identity in You, not in what I can or can’t eat.

I am more than celiac. Help me live like it.

Amen.

Moving Forward

Signs of Healthy Integration

• You manage celiac well without constant emotional turmoil
• You can talk about it when relevant and not talk about it otherwise
• Your relationships and activities aren’t dominated by food
• You advocate without obsessing
• You have a full sense of self that includes many elements

Signs of Imbalance

Under-integrated:

• Denial, non-compliance, minimizing
• Health consequences from not taking it seriously

Over-integrated:

• Everything is about celiac
• Excessive anxiety, restriction, social limitation
• Sense of self reduced to the disease

The Ongoing Work

Identity integration isn’t done once:

• Life circumstances change how celiac fits
• New challenges re-raise questions
• Balance shifts and needs recalibration

Keep checking in: is celiac in its proper place?

You have celiac disease. You are not celiac disease. Hold the difference.