Thanks to Family Practice News for pointing me to this study published in Clinical Gastroenterology and Hepetology entitled Patients with Celiac Disease are not Followed Up Adequately.
As you can imagine, you clever readers you, the study indicates that post-diagnosis, many people with celiac disease do not receive adequate care. Data was collected on 122 patients diagnosed by the Mayo Clinic and Olmstead Medical Center.
The patients were overwhelmingly female (70%) with a median age of 42 years, and their medical histories were examined for a five-year period. As the Family Practice News article goes on to explain, the number and frequency of “celiac disease visits” that patients had was looked at — in other words, visits with any sort of medical practitioner who addressed the disease, its symptoms, and its treatment (a gluten-free diet).
Patients were classified as having either no, irregular, or regular follow-up. Of those patients with at least 4 years of follow-up (113 of the 122), only 35% had regular follow-up, defined as 2 or more visits to a practitioner and 2 or more serologies (ie, bloodwork), starting at least 6 months after diagnosis and with at least 6 months between them.
More than a third of patients (37% or 42 patients) had at least one visit that did not include “documentation of gluten-free diet compliance”. The only factor researchers found as being related to regular follow-up was diarrhea: patients who had diarrhea at the time of diagnosis were more likely to have regular follow-up. Neither age, sex, genetic history, nor other symptoms were related to regularity of follow-up.
Given how many cases of non-responsive celiac disease are actually caused by noncompliance with the gluten-free diet, and how many scary diseases celiac disease is linked to, it’s surprising how lax follow-up visits can be. Then again, there are no clear, widely accepted standards for follow-up visitation. Speaking for myself, I know I would have fallen into the no- or irregular- category in the 5 years post my own diagnosis.
How often do you see a doctor, nutritionist, or other medical professional in relation to managing your celiac disease? How often do you get bloodwork done, and what do you look for (tTG antibodies, transaminases, thyroid panel, etc.)?