5 Facts a Celiac Doctor Wants You to Know

As a Health Educator, Celiac Awareness Month in May may get me more excited than most. More than any other time of year, people are reading, sharing, and focused on educating and raising awareness about this disease. There’s nothing I like seeing better than info and resource-sharing. There’s also nothing I like LESS than seeing info shared that isn’t fact-based but based solely on personal experience. While there’s nothing wrong with saying ‘this was my experience’ in some circumstances, often times this info is used to make important decisions that can impact health. Need an example? It may look something like this: I eat X with no problem or ‘try going gluten free and see if you feel better.’ Again, well-meaning but when it comes to managing an autoimmune disease, it’s imperative to get vetted, data-driven info. Just the Celiac Disease Facts, please.

As a member of many online Celiac and Gluten Free groups, the same questions and issues come up again and again. That served as the inspiration for “5 Facts a Celiac Doctor Wants You to Know about Celiac Disease.” Working with the University of Maryland Celiac Center to create this Celiac Disease Fact Sheet, I hope you will share it with anyone you know with Celiac, who is gluten free, thinking about going free, has gluten sensitivity or cares for a child with any of the above.

Many thanks to Runa Watkins, MD from the University of Maryland for serving as Medical Advisor.

Click here for downloadable Celiac Disease Facts Infographic

Celiac Disease Facts

1. Make annual Celiac check appointments.

   After diagnosis, it’s important to be checked annually. There are tests that need to be run every year including Antibody Levels, Hemoglobin, Iron, Folate, B12, Zinc, Vitamin D and Calcium. Since Celiac Disease is linked to Osteoporosis and Osteopenia, bone density testing (called a DEXA Scan), will be ordered. Additionally, having one autoimmune disease makes it more likely to have another, so tests for Thyroid function and other autoimmune symptoms will be monitored.

2. Siblings and 1st degree relatives should be tested every 2 years.

   Or sooner if symptoms present. Celiac Disease is a genetic autoimmune disease which means it’s hereditary. First degree relatives are at a 22% higher risk of having the disease. Both the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) and American College of Gastroenterology (ACG) recommend testing all first degree relatives every 2 years or earlier if symptomatic. Please keep in mind that just because celiac serologies are negative at one time, does not guarantee they won’t become positive in a genetically susceptible individual.

   If genetic testing is done and it is negative, then testing every 2 years is no longer needed. If genetic testing reveals at least one of the Celiac genes, proceed with testing every two years.

3. You are never too young or too old to be diagnosed. 

   Celiac patients range in age from babies under a year to seniors in their 90’s. As long as you are consuming gluten, you can be tested.

4. Persistent Celiac symptoms may be a sign of gluten exposure.

   Gluten in the diet can account for unresolved Celiac symptoms. Look for gluten in sneaky culprits or cross contamination.

   Please keep in mind that healing time can take vary by individual and antibody levels can take a while to return to normal levels. That being said, Refractory Celiac, defined as that persist or recur after six to 12 months on a strict gluten-free diet, is considered rare.

5. Do not go gluten free before getting tested for Celiac.

   Going gluten free before getting tested can effect test results. Why get tested if the treatment is the same – namely the gluten free diet? It’s vital to know whether you have Celiac – an autoimmune disease – or a gluten sensitivity. Having Celiac means there is an autoimmune reaction when gluten is consumed that can damage the small intestine that does not occur with gluten sensitivity and requires annual monitoring for best outcomes (See Fact 1.). Strict dietary adherence, including vigilance for cross contamination, is necessary with Celiac Disease; Celiac causes nutritional deficiencies and intestinal damage with glutening that haven’t been shown with sensitivities.

   Having one autoimmune disease increases the likelihood for another and patients will monitored for other autoimmune issues (See Fact #1). Lastly, because Celiac is hereditary and genetic, other family members should be followed for disease development.

If you live near a Celiac Center, please consider getting your care from them. This disease can be confusing, even for the medical profession, and it’s easier to get Celiac Disease Facts from those who specialize in it.