What to Expect at Your Nutrition Visit
At this time, the gluten-free diet is the only treatment for celiac disease. While there is a lot of information online about the gluten-free diet, appointments with a registered dietitian (RDN) skilled in celiac disease are a vital part of your health management plan.
In your nutrition appointments, an experienced dietitian will1,2,3:
- Review your diet, supplements, celiac blood tests* (examples: TTG-IgA, DPG-IgA, DGP-IgG, or EMA) and nutrition labs. Common nutritional tests that may be monitored in celiac disease include:
- CBC (complete blood count that includes hemoglobin and hematocrit, etc.)
- Vitamin D
- Other B vitamins, such as methyl malonic acid [a marker of B12 status], as needed
- Other fat soluble vitamins (vitamin A, E and K), as needed
- PTH (parathyroid hormone), as needed
- Copper, as needed
- Others, as needed
- Teach you the gluten-free diet, including label reading, sources of hidden gluten, grocery shopping, cross-contact with gluten in the kitchen and when dining out, etc.
- Recommend dietary changes and/or supplements to help relieve symptoms, such as constipation, diarrhea, unwanted weight changes, and conditions such as lactose intolerance
- Help you balance your gluten-free diet and select vitamin/mineral supplements, as needed
- Suggest useful resources, such as local and national support groups
- Support you in adjusting to this new way of eating
Follow-up visits will include a review of:
- Recent blood tests* or procedures
- Any weight changes and your goal weight (if different from current weight)
- Any ongoing or new symptoms (gas, bloating, fatigue, nausea, loose stool, constipation, etc.)
- Activity level
- Your understanding of and willingness to follow the gluten-free diet
- Supplements and medications
- Your questions
- Plans for any future health goals1,2,3
For your first visit, think about these questions in advance:
- How were you diagnosed with celiac disease?
- What symptoms/laboratory abnormalities did you have prior to diagnosis and now?
- Do you have your medical test results (such as small intestinal endoscopy with biopsy report, gene testing (HLA-DQ2 or HLA-DQ8) or celiac blood work*?
- Have you started the gluten-free diet? If so, for how long?
- How are you feeling? Any symptoms?
- How do you feel 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 visit run more smoothly.
- Detailed questions about your height and weight, food and nutrition history, your current diet (low lactose, heart-healthy, vegetarian, kosher, etc.?), any food allergies or food intolerances, and current medications and supplements you may be taking.
- A 3-day food record to show what you have been eating and drinking.
- Copies of your celiac blood tests* and medical tests results. Your primary care doctor may choose to run some of the blood tests listed in the Nutrition Lab work box or your celiac healthcare team will order them. Examples of some tests that are recommended with a diagnosis of celiac disease or as needed (based on symptoms) include:
- Small intestinal endoscopy with biopsy (recommended at diagnosis and if symptoms or lab abnormalities persist)
- Bone density report (recommended ~12 months after starting the gluten-free diet)
- Celiac blood tests* (examples: TTG-IgA, DPG-IgA, DGP-IgG, or EMA)
- Fructose breath test (as needed)
- An updated list of medications and doses, and supplements (vitamins, minerals, and herbal products, etc.). Make a note if the products are gluten free if you have already researched this information. You can call your pharmacist or the manufacturer to check the gluten-free status of your medications. You can also check the gluten-free status of many medications at Gluten-Free Drugs.
- Questions about your personal, professional and social life as it relates to your new diagnosis. Common questions people ask are:
- How careful do I have to be to avoid gluten?
- What will happen to me if I accidentally eat food that contains gluten?
- 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.
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. Our knowledge of celiac disease and the gluten-free diet is always growing; be sure to stay connected so you can stay current.
- Evidence Analysis Library. Executive Summary of Recommendations. Academy of Nutrition and Dietetics. Accessed March 16, 2021.
- 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. Accessed March 16, 2021.
Editors: Melinda Dennis, MS, RDN, LD; Amy Keller, MS, RDN, LD; Daniel Leffler, MD, MS