Building Your Healthcare Team
Published May, 2021
The purpose of this article is to explain the different types of expertise that may be beneficial when taking a comprehensive approach to treating a person diagnosed with celiac disease. GIG acknowledges that not everyone has access to all of these options, and some have access to very few of them. This is an important point to note and a conversation we will continue to engage in as we prepare new initiatives to address disparities in access to the resources available to people with celiac disease.
You’ve been diagnosed with celiac disease or are experiencing reactions to gluten which could signal a non-celiac gluten sensitivity (NCGS). What do you do next?
Once you get a celiac disease diagnosis, a good next step is to build your healthcare team. Why? Celiac disease affects many aspects of your health and your life. It’s helpful to approach your celiac disease diagnosis in a holistic way. That means you should consider the physical, mental, and emotional aspects of illness, diagnosis, and treatment so you are properly informed, and receive the care you need, as you get a team of experts on your side
Here are some healthcare practitioners who can be part of your team along your journey toward healing and wellness.
1. Medical Doctor/General Practitioner/Naturopath
Chances are your general practitioner (GP) or family doctor was the first healthcare provider you saw about the symptoms you experienced before getting a celiac disease diagnosis. Family doctors tend to be generalists. That means they may not specialize in any particular condition. If they do have a specialty, it might not be related to autoimmune diseases like celiac disease.
For some people, their GP is knowledgeable about the many symptoms of celiac disease and can make a referral to a gastroenterologist to evaluate and test. Other people find that their regular doctor may not have celiac disease on their radar.
If you haven’t yet been diagnosed and are experiencing some classic symptoms of celiac disease such as diarrhea, fatigue, weight loss, bloating and gas, abdominal pain, nausea and vomiting, and constipation, talk to your doctor about getting a referral to a GI specialist if they have not yet offered that option.
An alternative to a Medical Doctor or MD is a Naturopathic Doctor or ND. A naturopathic doctor takes a holistic approach to medicine and looks for integrative solutions that combine both Western and Eastern medicine. There are naturopaths who specialize in autoimmune issues, digestive issues, and even celiac disease. Note that not all medical insurances cover naturopathic doctors.
2. Gastroenterologist/GI Specialist
Gastroenterologists focus on the digestive tract, including the stomach, gallbladder, liver, bile ducts, and pancreas. GI specialists are trained to diagnose and treat problems in your gastrointestinal (GI) tract. Because some of the common symptoms of celiac disease are related to the GI tract, they may be more likely to suspect celiac disease and order the appropriate tests than a doctor who specializes in another area of medicine.
Not everyone with celiac disease experiences specific digestive tract issues or symptoms. Even if you do not have overt digestive symptoms, celiac disease damages the small intestine, so it is important to have a GI specialist involved in your care. They may also refer you to a registered dietitian to guide you on transitioning to eating gluten-free.
If you have medical insurance, check to see if you need a doctor’s referral to a gastroenterologist or GI specialist to get proper coverage.
3. A Registered Dietitian or Registered Dietitian Nutritionist
Both the American Gastroenterological Association and the Academy of Nutrition and Dietetics recommend that people diagnosed with celiac disease see a registered dietitian for counseling on nutrition and the gluten-free diet.
Registered dietitians (RD) and registered dietitian nutritionists (RDN) are essentially the same position. Depending on the place where they are practicing, they could be required to have specific training or certifications. In some cases, a dietitian may have more specialized schooling than someone who is solely a nutritionist.
“The primary role of an RDN is to provide detailed education and guidance on the gluten-free diet, taking into account patients’ food preferences and other individual factors and circumstances,” explains Lola O’Rourke, MS, RDN, GIG Education Coordinator. “The goal is to achieve long-term dietary adherence and return of celiac disease antibodies to normal levels.”
Currently, the only available “treatment” for celiac disease is entirely eliminating gluten from your diet. Cutting out gluten-containing grains such as wheat, barley, and rye can also reduce intake of essential vitamins and minerals your body needs for complete nutrition such as B vitamins.
Your RD or RDN can explain how you can get the nutrients you might be missing through other gluten-free foods. They can help you with meal preparation ideas to ensure the changes to your diet are manageable.
“They can also make appropriate recommendations on vitamin and mineral supplements if inadequacies can’t be resolved by improved dietary intake,” says O’Rourke.
Something to keep an eye on: The Medical Nutrition Therapy Act of 2020 was introduced into the House of the U.S. Congress to expand Medicare coverage of the costs of a registered dietitian or nutrition professional as part of treatment for celiac disease.
4. GI Psychologist
Living with undiagnosed celiac disease and chronic health issues can take a toll on your mental health. Even if getting a celiac disease diagnosis feels like a “relief” to finally know what’s wrong with your health, receiving the news can be emotional. If that’s the case for you, who can you see?
“Many patients find it helpful to meet with a psychologist or other type of mental health professional for psychotherapy to help cope with these changes and the impact that they can have on a person’s quality of life,” says Alyse Bedell, PhD, GI Health Psychologist and Assistant Professor of Psychiatry & Behavioral Neuroscience at The University of Chicago.
Bedell says that, if available in your area, working with a gastrointestinal health psychologist, a “GI psychologist,” is an option for getting help adjusting to a celiac disease diagnosis and making changes to your diet. If you continue to struggle with gastrointestinal upset even when you are sticking to a gluten-free diet, you may benefit from having a professional to speak with about your situation.
If a GI psychologist is not available in your area, Bedell says you can talk with a psychologist or other type of therapist who has experience working with people with chronic or acute medical conditions.
“If a person with CD is struggling to maintain a healthy body weight or feels that food is completely controlling their life, they might benefit from working with a GI psychologist or potentially an eating disorder specialist for help changing these behaviors,” says Bedell.
Getting the mental health support you need can be important to your overall health.
Other Wellness Practitioners
Anyone diagnosed with celiac disease can benefit from a basic healthcare team consisting of a general practitioner, gastroenterologist, and a dietitian. If you are experiencing emotional distress before or after your diagnosis, a GI psychologist may be helpful as well.
In some cases, you may need the input of additional specialists. For example, if you are biologically female, seeing a women’s health specialist could be helpful since some of the symptoms of celiac disease are specific to menstrual cycles and could include female infertility. If you have, or may have, other autoimmune conditions, you might need to see an endocrinologist or rheumatologist.
How do you find the right practitioners for your healthcare team?
Speak with your current healthcare practitioners. Ask them who else you should see, then ask for referrals. When putting together your healthcare team, make sure to also ask for, and sign, releases of information to give each provider permission to share your health information with the others on your team.
If at any time you don’t feel comfortable with a healthcare practitioner on your team, get a second opinion – or ask for additional referrals and change to a new practitioner.
“If you find somebody you don’t think is right for you, it is important to search until find the right person. It’s not always a good fit,” says Wangen.
O’Rourke adds, “Be your own advocate, and be persistent.”
Taking control of your health and healthcare includes putting together a team of providers who listen, support, and encourage you to be the leader of your personal healthcare journey. Together, your team can help you transition into a gluten-free lifestyle while also addressing your specific health needs.
Disclaimer: The information on this website is for educational purposes only. Consult your healthcare team when considering this information.
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