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Monitoring Your Progress#

Medical Disclaimer

This guide is for informational purposes only. It is not medical advice. Read the full disclaimer.

Once you start treatment, blood tests help you and your doctor track whether the gluten-free diet is working, whether dapsone is safe, and how your disease is responding over time.

Blood tests for disease monitoring#

Anti-TG2 IgA (tissue transglutaminase)#

This is the primary marker for celiac disease activity and GFD compliance.

  • Untreated DH: Positive in ~70-95% of patients
  • On strict GFD: Disappears within 1-3 years
  • What it tells you: If anti-TG2 stays elevated, you may have ongoing gluten exposure (intentional or accidental)
  • Limitation: Not sensitive enough to detect minor, occasional gluten exposures

Anti-TG3 IgA (epidermal transglutaminase)#

This is the DH-specific marker — it measures the antibody that actually deposits in your skin.

  • Untreated DH: Positive in ~86-95% of patients
  • On strict GFD: Drops from ~86% to ~21% positivity after one year
  • Key insight: In patients who still need dapsone despite GFD, anti-TG3 often stays positive even when anti-TG2 has cleared
  • What it tells you: Anti-TG3 is the more sensitive indicator of ongoing DH disease activity

EMA IgA (endomysial antibodies)#

  • Very specific (~99%) but less sensitive than anti-TG2
  • Useful as confirmation
  • Disappears on GFD roughly in parallel with anti-TG2

Total serum IgA#

  • Must be checked at least once to rule out IgA deficiency
  • IgA deficiency occurs in ~2-3% of celiac patients and causes false negatives on all IgA-based tests
  • If deficient, your doctor should use IgG-based tests (anti-DGP IgG) instead

Monitoring schedule for dapsone#

If you're on dapsone, these blood tests are required:

Timing Tests Purpose
Before starting G6PD level Mandatory — G6PD deficiency is a contraindication
Before starting CBC, reticulocyte count, liver function, kidney function Baseline values
Weekly x 4 weeks CBC Catch early agranulocytosis or severe anemia
Monthly x 3 months CBC, liver function Monitor hemolysis and liver
Quarterly ongoing CBC, liver function, methemoglobin level Ongoing safety

What to watch for#

  • Hemoglobin dropping — sign of hemolytic anemia (very common on dapsone, dose-dependent)
  • Reticulocyte count rising — your body compensating for red blood cell destruction
  • Methemoglobin level > 10% — explains fatigue, headache, blue-tinged skin; may need dose reduction
  • White blood cell count dropping — rare but dangerous; agranulocytosis requires immediate attention
  • Liver enzymes rising — hepatotoxicity; may need to stop dapsone

Realistic timelines#

What improvement looks like#

Milestone Typical timeline
Dapsone relieves itch 1-3 days
Rash starts improving on GFD 1-6 months
Anti-TG2 IgA normalizes 1-3 years on strict GFD
Anti-TG3 IgA becomes undetectable Months to years after lesions clear
Dapsone dose reduction possible 6-24 months
Diet alone controls the rash Average ~2 years (range: 6 months to 5+ years)
IgA deposits fully clear from skin Up to 10 years

What affects the timeline#

  • Stricter GFD = faster improvement. Patients in remission were strictly compliant 78% of the time vs. 53% for those with ongoing symptoms.
  • Severe rash at diagnosis = longer path. If your initial rash was extensive, expect a longer timeline to clearance.
  • Secondary triggers matter. Unaddressed iodine intake, NSAIDs, or alcohol can delay improvement.

The frustrating reality#

  • Over 1/3 of patients still have some skin symptoms at 2 years on GFD
  • 14% have ongoing symptoms at long-term follow-up
  • This does not mean the diet isn't working — it may just need more time, or there may be hidden triggers to address

When to recheck antibodies#

A reasonable monitoring schedule:

  • At diagnosis: Full panel (anti-TG2, anti-TG3 if available, EMA, total IgA)
  • 6 months: Recheck anti-TG2 (should be declining)
  • 12 months: Recheck anti-TG2, anti-TG3 if available
  • Annually thereafter: Anti-TG2 (confirms continued GFD compliance)
  • If flaring: Recheck anti-TG2 (to assess whether gluten exposure occurred)

Other things to monitor#

Thyroid function#

  • Up to 50% of DH patients have autoimmune thyroid disease
  • Get thyroid function tested at diagnosis and periodically thereafter
  • Symptoms of thyroid problems (fatigue, weight changes, cold/heat intolerance) overlap with DH/dapsone side effects — don't assume everything is from DH

Nutritional status#

  • Vitamin D (25-OH-D) — target 40-60 ng/mL
  • Iron / ferritin — malabsorption can cause deficiency
  • B12 and folate — may be low due to intestinal damage
  • Zinc — commonly deficient in DH patients
  • Bone density (DEXA scan) — consider if malabsorption has been prolonged

Full monitoring science: Monitoring & Neurological Comorbidities

Next steps#

Learn about long-term management and quality of life with DH:

Living with DH