By Alison Massey MS, RD, CDCES
I was about five or six years into my career as a registered dietitian (RD) before I ever had a referral for a patient newly diagnosed with celiac disease. In her late sixties, she was confused by the diet handout provided by the gastroenterology office and was looking for answers. I didn’t want to admit to my hopeful patient that she was the first person I really had ever educated on a gluten-free diet. She wrote me a thank you note that I felt was much undeserved that I kept in my office desk drawer for years. Honestly, I felt so unprepared for the visit.
I didn’t think about celiac disease much over the next five years because I didn’t have many other patients with it, until my own celiac diagnosis in 2017. I was told to follow a gluten-free diet and likely received the same one-page handout that my patient got years ago. There was never any follow-up. Most of my healthcare providers don’t really address my celiac disease beyond simply asking if I’m following a gluten-free diet. There isn’t any screening for nutrient deficiencies unless I explicitly ask.
This might not be the standard of care for celiac disease diagnosis and management, but I’ve found talking to others with celiac disease that it is typical care. Visits with registered dietitians often aren’t covered by insurance plans even though diet is currently the only way to manage the disease.
According to the Celiac Disease Foundation, celiac disease impacts about 1% of the population but about 8-10% of individuals diagnosed with Type 1 diabetes are also living with celiac disease. Most cases of celiac disease are diagnosed within the first five years after the diagnosis of Type 1 diabetes although it’s possible for a diagnosis to occur later in life. Some evidence suggests a celiac diagnosis is an additional burden for individuals that are already managing Type 1 diabetes.
What is Celiac Disease?
Celiac disease is a genetic, autoimmune condition in which eating gluten, a protein found in wheat, rye and barley, damages the small intestines. It has a wide spectrum of clinical manifestations, so simply viewing it as an isolated intestinal disease might be too narrow.
Celiac disease impacts nutrient absorption. Left untreated, it can lead to additional health problems including:
- Heart disease
- Infertility & miscarriage
- Iron deficiency anemia
- Small intestine cancer
- Neurological symptoms
Screening for celiac disease should be considered for adults with suggestive symptoms, signs, laboratory manifestations or clinical suspicion which may include:
- Abdominal Pain
- Vitamin Deficiencies
- Iron Deficiency Anemia
Screening for Youth:
- Youth with Type 1 diabetes should be screened for celiac disease by measuring igA tissue transglutaminase antibodies with documentation of normal total serum IgA levels soon after diagnosis.
- Repeat screening within two years of diabetes diagnosis and then again after five years. Individuals with symptoms or a first-degree relative with celiac disease should be considered for more frequent screenings.
How Can the CDCES Play a Role?
I don’t believe it is only the RD that can play an important role in supporting those living with celiac disease. The CDCES is uniquely positioned and skilled in asking open-ended questions which might open opportunities to support care or provide the appropriate referral.
- Food insecurity questioning for a person also managing celiac disease might acknowledge the additional costs associated with purchasing gluten-free grains and products. On average, gluten-free products are more expensive than the equivalent wheat-containing version.
- Clinical history and discussion might include an evaluation of screening for celiac disease, if appropriate.
- Follow-up with those individuals living with both celiac and Type 1 diabetes might include a discussion on whether further education is needed to support care.
- Assumptions should never be made that an individual has received gluten-free diet education or doesn’t need further support on challenges with dietary management whether that’s navigating social eating, cross-contamination quandaries or simply creating a healthy and balanced gluten-free diet.
- Evaluate if there is an increased burden of care with the additional celiac diagnosis. How can the CDCES provide more supportive care and education in those cases?
Celiac Awareness Month might only occur during the month of May but as a CDCES my hope is that you will continue to support patients living with celiac disease and diabetes by remembering to acknowledge the role it plays in overall health.