Making sure you are not getting any gluten

4
Melinda Dennis MS, RDN, LDN

Q: My wife has celiac disease. How can she check to make sure she's not getting any gluten? Should she do a blood test? She hasn't had one in about 5 years. Also, how often should she be seeing her gastroenterologist?

Answer


Answer: There are several ways to monitor how well a person with celiac disease is following the gluten-free diet and maintaining his/her health:

  1. The National Institutes of Health’s Consensus Development Conference on Celiac Disease. recommends that after the initial diagnosis and treatment, patients should periodically visit their physician and registered dietitian (RDN) skilled in celiac disease who will assess symptoms, adherence to the gluten-free diet, and any potential complications.1 See the NCA website for a list of RDNs who offer counseling on the gluten-free diet. Children should be monitored for proper growth and development. Health care providers can encourage their patients to closely follow the gluten-free diet for life. 1

Every year, see a gastroenterologist or other physician who is knowledgeable about celiac disease. The doctor will make sure you are getting the proper tests to ensure optimal health.2,3

Here are the general guidelines for seeing celiac specialists at BIDMC Celiac Center.

Shortly after diagnosis - both gastroenterologist (MD) and registered dietitian (RDN)

At 3 months - RDN

At 6 months - both MD and RDN

Annually (or every two years when well-established) - both MD and RDN

  1. Learn everything you can about the FDA and USDA labeling laws as well as obvious and frequently overlooked sources of gluten. Read labels carefully.
  2. Use valuable resources like www.glutenfreewatchdog.org and membership in a celiac support group to stay abreast of product information, advocacy, research, conferences and news as they become available.
  3. Check your celiac serology (blood work) each year. “The amount of celiac antibodies [TTG IgA, IgA EMA, DGP IgA or DGP IgG] in the blood should decrease with a gluten-free diet. Checking one of these antibodies annually shows doctors that the gluten-free diet is working and that you are not accidentally consuming gluten. While minor gluten ingestion will not show up in these tests, they do offer a good picture of general gluten exposure.”4 [At Beth Israel Deaconess Medical Center’s Celiac Center, we check celiac serology every few months until it is normal, and then yearly.]
  4. Request blood tests to check your vitamin and mineral levels. Vitamin and minerals, such as vitamin D and iron, can be low in people with celiac disease because damaged villi make it difficult to absorb nutrients. Low levels can be corrected with gluten free- supplements or occasionally injections.2
  5. People with celiac disease may have decreased bone density due to lack of absorption of vitamin D or calcium. Many clinicians recommend a bone density scan (DEXA or DXA scan) to assess bone strength and potential risk for osteoporosis and bone fractures in patients with celiac disease. Ask your doctor when he/she recommends a DEXA scan; timing varies among clinicians.3
  6. An upper endoscopy with intestinal biopsies is recommended to monitor patients who are not responding clinically or who have a relapse of symptoms despite carefully following the gluten-free diet.3

Text in brackets [ ] above was added by Melinda Dennis.

Melinda Dennis and Delete the Wheat, LLC. have no financial interest in Gluten Free Watchdog, LLC.

References

  1. National Institutes of Health. NIH Consensus Development Conference on Celiac Disease. June 2004. https://consensus.nih.gov/2004/2004CeliacDisease118html.htm.
  2. Leffler DA. Monitoring Celiac Disease. In Real Life with Celiac Disease: Troubleshooting and Thriving Gluten-Free. Dennis M, Leffler D, eds. AGA Press. Bethesda, MD, 2010.
  3. Rubio-Tapia et al. ACG clinical guidelines: diagnosis and management of celiac disease. Am J Gastroenterol. 2013 May;108(5):656-76. https://www.ncbi.nlm.nih.gov/pubmed/?term=rubio+tapia+ACG+2013
  4. Vasagar B. How Celiac Disease is Treated. Celiac Center, Beth Israel Deaconess Medical Center. https://www.bidmc.org/-/media/files/beth-israel-org/celiac center/treating_cd_level_2.ashx?la=en&hash=F5C3CD9505E265093045A84161F178F21059C0AC.

Reviewed and updated October 3, 2022.

Note: This information is provided by NCA and Melinda Dennis, NCA's Senior Consulting Dietitian. This information is meant for educational purposes and is not intended to substitute for personalized medical advice or replace any medical advice provided directly to you by your health care provider. This information can be printed and used in consultation with your physician or dietitian. No liability is assumed by NCA, Ms. Dennis or her nutrition consulting service Delete the Wheat, LLC. by providing this information..

Visited 3668 Times, 1 Visit today

About Melinda Dennis MS, RDN, LDN

Melinda Dennis, Senior Nutrition Consultant for NCA, is an expert celiac dietitian and and Nutrition Coordinator for the Celiac Center at Beth Israel Deaconess Medical Center in Boston, MA. Diagnosed with celiac disease in 1990, she specializes in the nutritional treatment of patients with celiac disease and gluten-related disorders.

Melinda lectures internationally and has written extensively on the nutritional management of celiac disease including the award-winning book Real Life with Celiac Disease. Melinda was the original founder of NCA in 1993 and so it is only fitting that she comes back to us in this capacity. We are truly honored to have her on our team.