Building Your Medical Team

Celiac disease requires ongoing medical care. But finding healthcare providers who actually understand celiac isn’t always easy.

Here’s how to build a team that supports your health.

The Essential Team Members

Gastroenterologist

Your GI doctor is your primary celiac specialist. They:

• Confirm diagnosis
• Monitor intestinal healing
• Order follow-up testing
• Screen for complications
• Address ongoing GI issues

What to look for:

• Experience with celiac disease specifically
• Willingness to do follow-up endoscopy if needed
• Up-to-date knowledge (celiac science evolves)
• Good communication

Primary Care Physician

Your PCP handles general health and coordinates care. For celiac, they can:

• Monitor blood tests (antibodies, nutrition)
• Handle non-GI symptoms
• Provide referrals to specialists
• Address comorbid conditions

What to look for:

• Basic celiac understanding
• Willingness to learn
• Good record-keeping (so you don’t repeat history constantly)

Registered Dietitian (RD)

A dietitian experienced with celiac is invaluable, especially early on:

• Teaches the GF diet properly
• Identifies hidden gluten sources
• Addresses nutritional deficiencies
• Helps with meal planning
• Troubleshoots persistent symptoms

What to look for:

• Specific celiac experience (not just general nutrition)
• Up-to-date on GF products and resources
• Practical approach (not just theory)

Note: Look for RD (Registered Dietitian), not just “nutritionist”, RD has specific training and credentials.

Other Specialists (As Needed)

Depending on your situation:

Dermatologist: If you have dermatitis herpetiformis or skin issues

Endocrinologist: If you have thyroid issues or other autoimmune conditions

Reproductive specialist: If fertility is a concern

Mental health provider: For processing diagnosis, managing anxiety/depression

Dentist: Celiac can affect dental enamel; make sure they know your history

Finding Good Providers

Ask for Referrals

From celiac organizations:

• Celiac Disease Foundation
• Beyond Celiac
• Local celiac support groups

Many maintain lists of knowledgeable providers.

From other celiacs:

• Support groups
• Online communities
• Personal connections

Word of mouth from other patients is valuable.

Interview Potential Providers

Before committing, ask:

• “How many celiac patients do you treat?”
• “What’s your approach to monitoring celiac disease?”
• “Are you familiar with the latest celiac research?”
• “How do you handle patients who are still symptomatic on a GF diet?”

Their answers tell you a lot.

Trust Your Gut

If a provider:

• Dismisses your symptoms
• Doesn’t seem current on celiac knowledge
• Makes you feel unheard
• Gives outdated advice

Find someone else. Your health depends on having providers who take this seriously.

Red Flags in Healthcare Providers

”Just don’t eat gluten and you’ll be fine”

Oversimplification. Good providers know it’s more complex.

”Celiac isn’t that serious”

It’s an autoimmune disease with real complications. Providers who minimize it won’t manage it well.

”You don’t need follow-up testing”

Monitoring antibodies and possibly repeat endoscopy are standard of care.

”A little gluten won’t hurt”

This is dangerously wrong. Any provider who says this doesn’t understand celiac.

Dismissing ongoing symptoms

If you’re strict GF and still having issues, a good provider investigates. A bad one tells you you’re being too anxious or to just “give it time” indefinitely.

Green Flags in Healthcare Providers

They ask good questions

About your diet, symptoms, compliance, sources of possible contamination.

They stay current

Mention recent research, new understanding, evolving guidelines.

They take symptoms seriously

Even vague symptoms get attention, not dismissal.

They coordinate care

Communicate with your other providers, understand the whole picture.

They empower you

Educate you, involve you in decisions, respect your knowledge of your own body.

The First Appointments

With Your GI

Come prepared with:

• Your diagnosis history
• Current symptoms
• Questions about monitoring plan
• Questions about when to call between appointments

Ask:

• What’s the monitoring schedule?
• When should I get follow-up blood tests?
• Do you recommend follow-up endoscopy?
• How do I reach you if problems arise?

With Your Dietitian

Come prepared with:

• Current diet log (few days of what you eat)
• List of foods you’re unsure about
• Questions about specific products or situations

Ask:

• Review my diet, am I missing hidden gluten?
• What nutritional supplements do I need?
• What resources do you recommend?
• Can I contact you with questions?

With Your PCP

Come prepared with:

• Full health history
• Celiac diagnosis details
• Other conditions
• Current medications and supplements

Ask:

• What baseline tests should we do?
• How do you want to coordinate with my GI?
• What symptoms should prompt me to call?

Insurance and Access

Coverage Challenges

Dietitian visits:

• Not always covered by insurance
• May require referral
• May have visit limits
• Worth advocating for coverage

GI visits:

• Usually covered, but confirm
• May need referral from PCP
• Follow-up schedule may need justification

Testing:

• Blood tests usually covered
• Endoscopy usually covered for diagnosis
• Follow-up endoscopy may require justification

Advocating for Coverage

If denied:

• Ask your doctor to write a letter of medical necessity
• Appeal denials
• Cite celiac as a chronic medical condition requiring ongoing care

Cost Considerations

If uninsured or underinsured:

• Ask about sliding scale fees
• Look for celiac-experienced providers at teaching hospitals
• Some dietitians offer group sessions at lower cost
• Telehealth may be cheaper than in-person

Ongoing Relationship

Be an Active Patient

• Keep records of your symptoms and diet
• Come to appointments prepared
• Ask questions
• Follow up on recommendations

Communicate Changes

Let your team know if:

• Symptoms change
• You’ve identified new gluten sources
• Your life circumstances change (pregnancy, new job, etc.)
• You’re struggling with the diet

Build Continuity

Try to stick with providers who work for you:

• They learn your history
• You don’t have to re-explain
• They can track changes over time

When It’s Not Working

If a provider isn’t meeting your needs:

• Try direct conversation first
• If that doesn’t work, find someone new
• Don’t settle for inadequate care

Your health is too important.

You’re Part of the Team

Remember: you’re not a passive recipient of care. You’re the central member of your team.

You live with this condition daily. You know your body. You’re the one implementing the treatment.

Good providers work with you. Build a team that respects that.