If you feel that you are not getting appropriate care from your doctor’s office or managed healthcare system (for example, if you have been denied celiac disease testing) it can be frustrating and disheartening, especially if you are seriously ill or you are caring for a family member who is ill. There are steps you can take to advocate for yourself and your family and to receive advocacy assistance. This page has contacts for residents of California, but much of the information is universally applicable, and you can search online for similar offices or resources in your state or health care system.

While we regret that our foundation staff is unable to discuss individual situations or offer medical or legal advice, we provide the suggested steps and resources below for your convenience. Some of the suggestions only pertain to managed care systems.

1. Work with your medical practitioner
The first step is always to try to work with your doctor. If you are not satisfied with the medical care you are receiving, communicate about it clearly, patiently and politely. If you feel it will be of assistance, you may wish to provide your doctor with our list of Resources for Medical Practitioners. The list is comprised of well-respected resources on celiac disease and non-celiac gluten sensitivity offered by top university medical centers and the federal government’s National Institutes of Health.

2. Get a second opinion
Getting a second opinion means asking a doctor other than your regular doctor to review your case. It can help you make more informed decisions about your health care. Many doctors will support a patient’s decision to get a second opinion, as they want their patients to feel comfortable with their treatment. Your doctor may even find it useful if another doctor has additional expertise.

In an article by Holly Finn in the Wall Street Journal titled “First of All, Get a Second Opinion”, the author states that “[a] 2010 Gallup poll found that 70% of Americans are so respectful of their doctor’s advice that they never get a second opinion or do additional research. We apply more scrutiny to choosing bluejeans, buying flat-screen TVs, ordering lunch.”

A second opinion can provide peace of mind to the patient or suggest new directions or considerations. It may feel awkward to tell your doctor you are pursuing a second opinion and requesting a copy of your records be sent to another doctor’s office, but it is important to advocate for yourself.

3. Know your rights
Search online for “patient rights” and your state name. Californians are fortunate to have some of the strongest patients’ rights laws in the country. It is good to know your rights (such as the right to a second opinion and the right to see another doctor in the same network). Californians’ patient rights are protected by the Knox Keene Act and can be found here: http://www.opa.ca.gov/Pages/KnowYourRights.aspx

4.  Work with offices within your managed care system
If you are having problems getting appropriate care in your managed healthcare system, you may wish to call your provider’s Member Services and ask for the Office of the Patient Advocate. If that office does not solve the problem with you, you may wish to file a grievance, which you can usually do through Member Services.

5.  State offices of patient advocates
Search online for “state patient advocate office” and your state name (choose a link with a “.gov” extension to find a government office). The State of California’s Office of the Patient Advocate can guide you as you try to work with your doctor’s office or navigate your managed care system. The staff can help you file a grievance within your managed care system.
Telephone: 1-866-466-8900
Website: http://www.opa.ca.gov/

6.  State departments of managed care 
Search online for “state department of managed care” and your state name (choose a link with a “.gov” extension). In California, for example, if you are not satisfied with the response of your managed care system, the Office of the Patient Advocate can also help you file a grievance with the Department of Managed Health Care. This department may also be helpful just to talk to about your case.
Telephone: 888-466-2219 Website: http://www.dmhc.ca.gov/aboutthedmhc/gen/gen_contactus.aspx

7. State medical boards 
Search online for “state medical board” and your state name. The Medical Board of California is responsible for investigating complaints and disciplining physicians and other allied health professionals who violate the law. Consumers can contact the Board’s Central Complaint Unit for assistance. The website has some useful FAQs about medical records, credentials, etc.

8. Legal aid
Bay Area Legal Aid
Call 1-855-693-7285 M-F 9am-5pm
Call the Health Consumer Center if you need legal help with a health care issue or unfair medical billing problem. They provide assistance for health-related issues without regard to income eligibility. Telephone and walk-in assistance. Serving the counties of Alameda, Contra Costa, Marin, Napa, San Francisco, Santa Clara, and Sonoma.
Other locations: If you live outside the Bay Area, search for a local organization on The Legal Aid Association of California website https://www.laaconline.org/members/membership-type/ or search for “legal aid” with the name of your state.