I just came back from the 2015 Celiac Disease Foundation Conference and Expo in Pasadena, CA. During the conference, I had a chance to listen to Dr. Joseph Murray from Mayo Clinic talk about celiac disease. While I have heard him speak about the disease before, one slide stood out in my mind because I keep hearing stories about it. Follow-up care. Are you receiving it as a celiac? Or did your doctor abandon you after your diagnosis?

Too many times have I heard the latter. Patients are diagnosed and then told to just follow the gluten-free diet. They are left to scour the internet with questions like, “How do I know if celiac damaged my bones? How long until I feel normal again? Why am I not feeling better?” and often find misinformation instead of getting follow-up care from a physician.

Follow-up care and physician involvement after diagnosis is critical. Being diagnosed with a life-long autoimmune disease is serious, and something that serious should require follow-up care to make sure you’re managing your disease. You can consult CDF’s site, celiac.org, to see their recommended follow-up care regimen.

Repeat Serology (blood tests) and Endoscopy

Dr. Murray recommended having a follow-up endoscopy and biopsy a few years after following a gluten-free diet. However, this is not mandatory. CDF states that some physicians feel that annual blood testing is sufficient enough if the patient is not experiencing any issues. However, while the serum tTg-IgA antibodies are a good indicator of long-term dietary compliance, they are not indicative of short-term compliance. Your follow-up endoscopy and biopsy can show how your villi are healing on a gluten-free diet. Dr. Murray stated that serology levels typically fall within 6 months after a strict gluten-free diet. He also stated that biopsies improve more slowly in adults than in children.

Nutritional Profiles

While an endoscopy and biopsy can show you how your villi are healing, it won’t show you what else is happening with your body. As you know, celiac is an inflammatory disease that does not allow for maximum absorption of nutrients. When I had my first nutritional panel done after diagnosis, it showed that I was very low in key vitamins and minerals that my body needed to fully heal and make me feel the best that I could feel with my shiny new villi.

The National Foundation for Celiac Disease suggests the following tests for celiac disease management on top of follow-up serology:

  • Nutritional anemia profile (hemoglobin, hematocrit, folate, ferritin, vitamin B12)

  • Vitamin profile (thiamin, vitamin B6, 25-hydroxy vitamin D)

  • Mineral profile (copper, zinc)

  • Lipid profile

  • Electrolyte and renal profile

  • Complete blood count (CBC)

  • Thyroid stimulating hormone (TSH)

  • A bone density test is typically recommended after diagnosis

Consult with your doctor on who can provide these tests for you and if you need referrals to other doctors in your network.

Dietician and Supplementation

A dietician can also help evaluate your diet for any missing nutrients that you might not be getting, or add in additional foods that may help you increase your nutrients without (or with) additional supplementation. While they may tell you to eat more kale, at least you’ve got one more person in your corner, helping you heal and regain health after a celiac disease diagnosis.

If you do not feel like your current physician cannot help you with appropriate follow-up care, the Celiac Disease Foundation created a CDF Healthcare Practitioner Directory. This directory is free of charge and contains listings of physicians, dieticians, mental health professionals an dallied health providers across the US who treat patients with celiac disease and non-celiac gluten sensitivity. The directory will list if the physician is a CDF Medical Advisory Board member, practices at a Celiac Disease Center, or has Continuing Education in Celiac Disease.

Regardless of who you go to for follow-up care, make sure you’re getting the most effective follow-up care possible for this serious autoimmune disease.