What to Expect in Your First Year

The first year with celiac disease is a journey. Some parts are harder than expected, some easier. Here’s what to expect as you move through it.

Month 1: The Chaos

What’s happening:

• Learning what gluten even is
• Clearing your kitchen
• Figuring out what you can eat
• The shock of diagnosis

How you might feel:

• Overwhelmed
• Anxious
• Grieving
• Determined (in moments)

Focus on:

• Learning the basics
• Finding safe foods you’ll actually eat
• Don’t aim for perfection, aim for progress

Months 2-3: The Learning Curve

What’s happening:

• Getting better at reading labels
• Making more mistakes and learning from them
• Discovering GF products
• Finding restaurants that work

How you might feel:

• Frustrated by mistakes
• Some symptoms may be improving
• Still grieving
• Starting to find routine

Focus on:

• Building systems
• Learning from each glutening
• Expanding your safe food repertoire

Months 3-6: Finding Your Stride

What’s happening:

• Label reading becomes faster
• You know your go-to foods
• Restaurant patterns established
• Kitchen systems working

Physical changes:

• Many people feel notably better
• Energy may be returning
• GI symptoms improving
• Some may still feel rough, healing isn’t linear

How you might feel:

• More confident
• Occasional grief returns
• Starting to feel “normal”
• Frustrated when others don’t understand

Focus on:

• Refining your systems
• Addressing remaining symptoms
• Building support network

Months 6-9: The New Normal

What’s happening:

• GF living feels more automatic
• You’ve navigated holidays/events
• Social situations less scary
• Kitchen is smooth

Physical changes:

• Most feel significantly better
• Antibodies decreasing (on blood tests)
• Nutrient levels improving
• Healing progressing

How you might feel:

• More accepting
• Occasional frustration
• Starting to see benefits
• Less identity disruption

Focus on:

• Optimizing nutrition
• Dealing with any lingering issues
• Medical follow-up

Months 9-12: One Year In

What’s happening:

• You’re a veteran
• Systems are established
• You’ve seen the full cycle (seasons, holidays)
• The lifestyle is integrated

Physical changes:

• Many achieve full symptom resolution
• Blood markers often normal or near-normal
• May have follow-up testing

How you might feel:

• Acceptance (most of the time)
• Confidence in managing
• Still occasional grief/frustration
• Part of your identity now

Focus on:

• Long-term health maintenance
• Sharing what you’ve learned
• Planning for the years ahead

What Healing Actually Looks Like

Physical Healing

Intestinal recovery:

• Begins immediately with GF diet
• Significant improvement by 6-12 months for many
• Full healing may take 1-2+ years
• Some never achieve complete histological recovery

Symptom timeline (highly variable):

• Some feel better within days
• Others take months
• GI symptoms often improve first
• Energy, brain fog, other symptoms follow
• Non-linear, good days and bad days

Emotional Healing

Not as predictable as physical:

• Grief cycles back unexpectedly
• Acceptance builds over time
• Some triggers remain indefinitely
• Overall trend is toward integration

What Might Go Wrong

Still Having Symptoms

If symptoms persist:

• Review for hidden gluten sources
• Consider other food intolerances (dairy, etc.)
• Consult with your doctor
• Possible refractory celiac (rare)

Mental Health Struggles

Depression and anxiety are common:

• Related to chronic illness stress
• Related to nutritional factors
• May need professional help
• Don’t tough it out alone

Relationship Strain

The first year can stress relationships:

• Partners adjusting
• Family dynamics changing
• Social life disrupted
• Keep communicating

What Goes Better Than Expected

Food Quality

Many celiacs discover:

• They eat healthier than before
• More home cooking
• More whole foods
• Less processed food

Body Awareness

You learn to listen:

• You know what your body needs
• You notice what affects you
• You’re more intentional about food

Community

Many find:

• Other celiacs who understand
• Support they didn’t expect
• Resources they didn’t know existed

Resilience

You discover:

• You can do hard things
• You adapt more than you thought
• You’re stronger than you knew

Medical Milestones

3-6 Months

• Blood work to check antibody levels
• Usually starting to decrease

6-12 Months

• Follow-up blood work
• Discussion of nutritional status
• Assess symptom resolution

12-24 Months

• Many doctors recommend follow-up endoscopy
• Check for intestinal healing
• Establish long-term monitoring plan

One Year In: What’s Different

What You’ve Lost

Be honest about this:

• Spontaneous eating
• Certain foods you loved
• Simple social eating
• The ease of not thinking about food

What You’ve Gained

Also be honest:

• Health (or improving health)
• Body awareness
• New foods and recipes
• Community
• Resilience
• Intentionality about eating

What’s Just Different

Neither better nor worse:

• How you eat
• How you plan
• How you navigate social situations
• Part of who you are now

A Prayer for the First Year

Lord, this year has been a lot.

I’ve lost things. I’ve learned things. I’ve struggled and I’ve grown.

Thank You for getting me this far. For the healing that’s happened. For the people who’ve helped.

Give me grace for the years ahead. Let this year be foundation, not the whole story.

Amen.

Year Two and Beyond

The first year is the hardest. After that:

• You know what you’re doing
• The grief fades (mostly)
• Life continues
• Celiac becomes background

You made it through year one. Everything else is maintenance.