Updated Guidelines for Routine Retesting of Celiac Markers (March 2019)

(c) Angelica Nelson

I know how simplistic it can seem to have Celiac Disease.  Stay away from gluten.  Done. But it's not that easy. Gluten sneaks in and continues to damage the body.  Not just the gut lining, but the thyroid, the liver, the hemoglobin level in the blood (anemia), and more.  So retesting the levels of reaction, and the likely candidates for autoimmune harm, would be common sense.  But not everyone knows you have to do that, and some don't think it's needed.  On the latter, hey, it's a free country, if you don't want it tested, or can't afford it, that's OK.  But if you do, and your doctor doesn't, the situation is more tricky.

To help you communicate better with your doctor if you do want regular testing of Celiac disease activity levels, you might want to know about a new guideline published by researchers in Denmark and The Mayo Clinic in the US. Your doctor has access to the full text, but this is the gist:  In the first year you should be retested twice and possibly have a second endoscopy to ensure you're healing.  After that a blood test a year is recommended.  If your insurer has a problem with it, remind them that a cancer diagnosis is much more expensive for them than a yearly blood test, and that it's preventative to ensure you aren't triggering your disease.

Excerpt from Abstract:
AGA Clinical Practice Update on Diagnosis and Monitoring of Celiac Disease-Changing Utility of Serology and Histologic Measures: Expert Review.
 Gastroenterology. 2019 Mar;156(4):885-889. doi: 10.1053/j.gastro.2018.12.010. Epub 2018 Dec 19.
Husby S1, Murray JA2, Katzka DA3.

Author information

1   Hans Christian Andersen Children's Hospital, Odense University Hospital, Odense, Denmark.
2   Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, Minnesota.
3   Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, Minnesota.
Best Practice Advice 10: Celiac serology has a guarded role in the detection of continued intestinal injury, in particular as to sensitivity, as negative serology in a treated patient does not guarantee that the intestinal mucosa has healed. Persistently positive serology usually indicates ongoing intestinal damage and gluten exposure. Follow-up serology should be performed 6 and 12 months after diagnosis, and yearly thereafter. Best Practice Advice 11: Patients with persistent or relapsing symptoms, without other obvious explanations for those symptoms, should undergo endoscopic biopsies to determine healing even in the presence of negative TG2-IgA.

This is the most recent guideline published that I could find.  Guidelines that doctors use may be sourced from several places, including insurers, their local hospital where they have access, the medical board, or professional societies.

Being retested is something that should be directed by a doctor, but if your doctor doesn't, then remember it's not needed to have a doctor order the test (except if it's a procedure like endoscopy), direct to consumer labs exist and there are two in Durham. You might even choose do go this route because it's, out of pocket ,cheaper than paying for a doc visit and a test.

Depending on your particular health, you may also consider testing or discussing the following organs and systems that can be affected or are often associated with Celiac Disease:

  • Thyroid  (a full panel not just TSH)
  • Liver
  • Pancreas
  • Kidneys
  • Spleen (this one is hard to research but is far from a "disposable" organ)
  • Nutrient levels to direct food choices
    • Zinc levels (deficient?)
    • Iron levels 
    • Vitamin D levels
  •  Skin irritations
  •  Blood clotting factors (fibrinogen)
  • Prolactin (in pregnancy or new mothers)
  • Allergies or food intolerance (dairy intolerance is very common)

Also let's keep in mind the gluten free Celiac test that's still awaiting FDA approval.  As more and more people suspect they have problems with gluten and become gluten free before being tested, that test is absolutely essential for clarity.  Every doctor and patient should ask the FDA about it.  In the meantime, discuss a retesting schedule with your doctor.


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