Following the gluten-free diet is currently the only accepted treatment for celiac disease. For this reason, appointments with a dietitian skilled in celiac disease are a vital part of your health management plan.
In your nutrition appointments, an experienced dietitian will: 1,2,3,4
- Review your current diet, supplements and blood tests.
- Teach you the details of the gluten-free diet, such as label reading, sources of hidden gluten, shopping, and how to help prevent cross- contamination in the kitchen and when dining out, etc.
- Recommend dietary changes and/or supplements to help relieve symptoms, such as lactose intolerance.
- Help you to maximize your nutrition through balanced diet and vitamin/mineral supplements, as needed.
- Help you to manage or avoid common complications of the gluten-free diet, including constipation and weight gain.
- Refer you to useful resources on celiac disease and the gluten-free diet, such as local and national support groups.
- Support you in making the adjustment to this new way of eating.
Follow-up visits will include a review of:
- Recent blood tests or procedures
- Any weight changes
- Any ongoing or new symptoms
- Your activity level
- Your understanding of and willingness to follow the gluten-free diet
- Effectiveness of the gluten-free diet in managing your symptoms
- Your supplements and medications
- Your questions
- Plans for any future interventions 1,2,3
For your first visit it is most helpful to be prepared. Think about these questions. Together you will discuss:
- How were you diagnosed with celiac disease?
- Any medical test results (such as small intestinal endoscopy with biopsy report, gene testing or blood work)?
- Have you started the gluten-free diet? If so, for how long?
- How are you feeling? Do you have any symptoms?
- How are you feeling about this new diagnosis and the gluten-free diet?
- What is your main reason for coming to a nutrition visit?
Here is a list of some items that are often requested before or during a nutrition appointment. Have them ready to make your appointments run more smoothly and effectively.
- Be prepared to answer detailed questions related to your height and weight, food and nutrition history, such as your current diet, any food allergies, food intolerances, and current medications and supplements you may be taking.
- Many dietitians ask you to prepare a 3-day food record in advance and bring it to the visit.
- Bring copies of your blood tests and medical tests results. If necessary/possible you may want to ask your doctor to run some of the blood tests listed in the Lab Work box if they have not been done recently.
- Bring your updated list of medications and dosages.
- Bring your updated list of supplements (vitamins, minerals, and herbal products, etc) and amounts.
- You may be asked about your personal, professional and social life as it relates to your new diagnosis.
- Don't forget to bring your questions for the dietitian.
Common questions people ask are...
- How careful do I have to be to avoid gluten when following the diet?
- Can I grow out of this disease, or is the gluten-free diet for life?
- How soon can I expect to feel better?
- Where do I learn how to cook and bake with these gluten-free grains and flours?
- You can bring a friend or family member for support.
- Make sure to check with your primary care doctor and/or your insurance company if a referral is needed.
These are examples of some common blood tests that are used for celiac disease. Your doctor will likely order one or more of the labs listed below.
Gene testing (HLA-DQ2, HLA-DQ8)
These are labs that are commonly checked to review your nutritional status.
CBC (complete blood count: hemoglobin, hematocrit, etc)
Vitamin D (25 OHD)
TSH (thyroid stimulating hormone)
MEDICAL TEST RESULTS:
Small intestinal endoscopy with biopsy (recommended at diagnosis and if symptoms or lab abnormalities are persistent)
Bone density report (recommended ~12 months after starting the gluten-free diet)
Lactose breath test (as needed)
Fructose breath test (as needed)
TAKE HOME MESSAGES:
- It is very important to meet with a dietitian skilled in celiac disease after you have been diagnosed with celiac disease.
- The dietitian will review the information you provide, assess your nutritional status, educate you on the gluten-free diet, and provide you with resources to manage your gluten-free lifestyle.
- Evidence Analysis Library. Executive Summary of Recommendations. American Dietetic Association. http://www.adaevidencelibrary.com/topic.cfm?cat=3726. Accessed 6/2011.
- Schuppan D, Dennis M, Kelly CP. Celiac disease: epidemiology, pathogenesis, diagnosis, and nutritional management. Nutr Clin Care, 2005:8(2);54-69.
- U.S. Department of Health and Human Services/National Institutes of Health. NIH Consensus Development Conference on Celiac Disease. http://consensus.nih.gov/2004/2004CeliacDisease118html.htm. Accessed August 16, 2011.
- What to expect and ask at the exam. Celiac Disease Center at Columbia University. http://www.celiacdiseasecenter.columbia.edu/A_Patients/A04-WhatTo.htm. Accessed 8/4/2011.
Revision Date: 8-30-12
Author: Melinda Dennis, MS, RD, LDN
Editors: Suzanne Simpson, RD and Daniel Leffler, MD, MS