- Cynthia Kelly, CEO of the nonprofit Gluten Intolerance Group (GIG), physiciansweekly.com 1
“It took 2 years of visits to my primary care physician (PCP) before I finally received a diagnosis of celiac disease. Although I had iron deficiency anemia and rapid weight loss, my PCP diagnosed my condition as depression and informed me that I needed to take a break for my mental health—a diagnosis that failed to account for the full range of symptoms I was experiencing.”
In my years as a nutritionist and of advocacy through the Gluten Intolerance Group, I’ve realized that my diagnosis experience is similar to that of many other people currently living with celiac disease. Many newly diagnosed patients will echo the statement that they might have been able to manage their symptoms sooner if their PCP had thought to question earlier whether they stemmed from gluten sensitivity.
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The problem with diagnosis isn’t a lack of well-meaning PCPs, but rather a lack of visibility around the wide range of symptoms that can stem from celiac disease or non-celiac disease gluten sensitivity (NCGS).
Especially in the United States, PCPs play a key role in their patients’ access to diagnostic procedures, referrals and treatments—which they can’t receive for celiac disease or NCGS if their physicians are unfamiliar with the signs.
In addition to listening to your patients when they describe their symptoms, here are five ways PCPs can better support patients living with gluten sensitivity.
1. Become familiar with the wide range of symptoms.
While the most recognizable symptoms of celiac disease are those that mimic conditions such as irritable bowel syndrome (IBS) and disease (IBD), signs of gastrointestinal distress make up only part of the list of over 100 symptoms associated with the condition. Migraines, fatigue, chronic rashes, brain fog, iron deficiency anemia, body aches, and osteoporosis can also point to gluten sensitivity, but since most physicians rarely encounter patients with celiac disease or NCGS, they may be unfamiliar with some of these less-than-classic symptoms. When providers are aware of the more unusual symptomology that can stem from gluten intolerance, their patients are more likely to receive a swift and accurate diagnosis. Download this simple poster for a quick reference for celiac disease and NCGS symptoms.
2. Incorporate diagnostic tests for celiac disease into your practice.
Obtaining a conclusive diagnosis of celiac disease or another form of gluten sensitivity is a crucial first step in symptom management. In most cases, the patient’s PCP is the one most likely to raise the red flag that certain sets of symptoms point to celiac disease rather than IBS or IBD. Adding celiac disease to the differential diagnosis could rule the condition in or out much more efficiently, allowing for a quicker referral to a gastroenterologist who can help confirm the diagnosis and alleviate the patient’s symptoms. Serologic tests (eg, deamidated gliadin peptide) and genetic testing (eg, HLA-DQ2 and HLA-DQ8 markers) in combination with small intestine biopsies can aid in diagnosis. Even if these tests rule out celiac disease, IBD, or IBS, the door is open for diagnosis and treatment for NCGS.
3. Seek out and advocate for education that includes celiac disease.
For patients with undiagnosed celiac disease, the most significant predictor that they will receive a timely and accurate diagnosis is having a physician who is aware of the many ways in which celiac disease can present. However, as with many conditions, the research about celiac disease and other forms of gluten sensitivity is constantly evolving, further underscoring the need for its inclusion in continuing medical education (CME). While most CME programs are unlikely to offer sessions on a single condition, advocating for the inclusion of celiac disease in sessions about IBD, IBS or Crohn’s disease can help physicians develop greater awareness of the overlapping signs and distinctions among this set of conditions.
4. Stay up-to-date on treatment options.
Most patients with celiac disease or NCGS can manage their symptoms effectively with a gluten-free diet, particularly when it is managed in collaboration with a registered dietitian. Dietitians with expertise in celiac disease can assist patients in monitoring their symptoms, ensuring their nutritional needs are met and identifying potential hidden sources of gluten that could cause long-term health issues. While a gluten-free diet is currently the only proven course of treatment for patients with celiac disease or NCGS, research into inflammation and the gut biome is ongoing, and there are several clinical trials underway related to the treatment of celiac disease. These medications would either block adverse reactions to gluten or reinforce existing protections in the gut. Since these medications are still in early trial stages, the ability to prescribe them to patients is likely still years away—but staying on top of ongoing research into celiac disease and NCGS can make sure you’re helping patients manage their symptoms with the most current, effective treatments available.
5. Connect newly diagnosed patients with community resources.
Living with gluten sensitivity can be a profoundly isolating experience, even after the cause of a patient’s symptoms is conclusively identified as celiac disease or NCGS. The dietary restrictions necessary for symptom management can significantly impact a patient’s mental health, which can show up as anxiety, depression, and disordered eating. One of the most important steps a physician can take on behalf of a patient with newly diagnosed celiac or NCGS is to connect them to a support group, particularly a local one that can help them identify places to eat, shop, or find resources within their community. When a patient leaves the doctor’s office with a new diagnosis of celiac disease or NCGS, they often feel unsure about what to fix for their next meal, but connecting them to local resources and communities can be a great way to help them feel less overwhelmed.
For any patient, being unable to discern the cause of symptoms can be a frightening and isolating experience, as can the process of reorienting routines around a new diagnosis. When it comes to a diagnosis of celiac disease or NCGS, the experience can be made much more manageable when physicians are knowledgeable about gluten sensitivity, familiar with diagnostic and treatment methods, and committed to connecting patients to community resources.