When Necessary Restriction Becomes Harmful: ARFID at the Intersection of Celiac Disease and Mental Health

Podcast Transcript

Dr Brateanu:

Welcome to the Medicine Grand Rounders Podcast, a platform dedicated to exploring key topics in internal medicine. Highly relevant to the medical community. This podcast is made possible through the generous support of a grant from the Cleveland Clinic Education Institute. However, the views and opinions expressed here are those of the speakers and do not necessarily reflect the official position of the Cleveland Clinic. Each episode brings together world-class experts and distinguished physicians from Cleveland Clinic to share their knowledge, experience and perspectives on issues that impact healthcare professionals and patient care. Our discussions aim to promote learning, advance professional development and inspire meaningful conversations with the medical community. Today's episode is hosted by Dr. Nitu Kataria, Internal Medicine Physician at the Cleveland Clinic, and me, Dr. Andrei Brateanu, also in Internal Medicine. We invite you to join us as we delve into today's thought-provoking topic.

Ridhima Kaul: 

Hi everyone, my name is Ridhima Kaul, I am a second year resident at Cleveland Clinic, and today I am joined by my research mentors and a team of gastroenterology experts to discuss something many of us see in clinic but don’t always have the language—or framework—to diagnose: avoidant and restrictive eating disorders in patients with celiac disease. This is when appropriate dietary vigilance crosses into Avoidant/Restrictive Food Intake Disorder—ARFID in patients with celiac disease.

I am excited to interview Dr. Claire Jansson-Knodell, staff physician expert from the gastroenterology, hepatology and nutrition at CC, Madison Simons, staff physician expert in GI psychology with GI, hepatology and nutrition at CC, and Kendra Kitson, IBD and Celiac Disease Dietitian in the Center for Human Nutrition at Cleveland Clinic, whose multidisciplinary work has helped define this emerging clinical space.

Ridhima Kaul: 

As a brief reminder, what is celiac disease, and how common is it?

Dr. Claire Jansson-Knodell:

Celiac disease is an immune-mediated condition that happens in genetically susceptible individuals when they ingest gluten – the gluten damages the villi in the small intestine and flattens the villi – leading to symptoms of GI discomfort. It is thought to affect around 1% of the general population.  A diet free from gluten is lifesaving for patients with celiac disease.  

Ridhima Kaul: 

What is gluten and how do you follow a gluten-free diet? 

Kendra Kitson: 

Gluten is a storage protein found in wheat and is an additive in a number of different foods. Since this is the antigen that causes the immunogenic response that damages the small intestine, hence it is imperative that patients with celiac disease adhere to a strict gluten free diet.  Kendra to expand on gluten here…

Ridhima Kaul:

What about ARFID? What is this and when is this seen?

Dr. Madison Simons

For patients with celiac disease, the adherence to GFD may slowly turn into a source of fear, anxiety, and social isolation. They may present with food restriction beyond what is required for a GFD and they may begin to restrict other food groups to prevent symptoms. And this is when we should consider Avoidant Restrictive Food intake disorder.

Ridhima Kaul:

Thank you for explaining that – I want to take the time to discuss a case-based example. 
 Let’s begin with a case presentation: 

A 32-year-old woman with biopsy-proven celiac disease diagnosed three years ago presents for follow-up. At diagnosis, she had iron-deficiency anemia, bloating, and fatigue. She adopted a strict gluten-free diet and did well—her symptoms resolved, serologies normalized, and a repeat biopsy showed mucosal healing. But over the past year, she’s lost 10 pounds unintentionally. Her iron and vitamin D are low again. She reports eating mostly rice, eggs, bananas, and a single brand of gluten-free crackers and tries to restrict herself to these “safe” items. She no longer eats at restaurants, avoids work dinners, and brings her own food to family gatherings. She denies body image concerns. She wants to gain weight.

As internists or gastroenterologists, we might think:

• Is this refractory celiac disease?
• Ongoing gluten exposure?
• IBS overlap?
• Depression?

Ridhima Kaul:

When you hear this case, what stands out?

Dr. Claire Jansson-Knodell:

What jumps out immediately is that her celiac disease is controlled, yet her restriction is worsening. That’s the first clue. ARFID is defined by what food groups a patient is avoiding by why they are avoiding these food groups. This patient isn’t avoiding only gluten containing foods and she is not avoiding food to lose weight. She’s avoiding food because of fear of consequences. In celiac disease, we expect vigilance and strict adhere to a GFD. But here, the vigilance has become disproportionate to medical necessity – she has began restricting herself to limited food options. 

Dr. Madison L. Simons:

While this was an easier case, ARFID may be present in celiac disease when celiac symptoms are not well controlled; studies on patients with CeD have showed that patients with CeD and ARFID did not appear to have a greater adhere to a GFD then those without ARFID. Additionally, there are no differences identified in bone disease, micronutrient deficiencies, or biopsy findings between those with or without ARFID. 

Kendra Kitson: 

So while ARFID may be caused hypervigilance around maintaining a gluten free diet, those with ARFID will restrict food intake beyond a GFD. The maladaptive eating behaviors like those seen in ARFID are not necessary for CeD control and do not lead to better adherence to a GFD or better outcomes. 

Ridhima Kaul:

So for learners listening: ARFID is not a diagnosis of exclusion after labs are normal—it’s something to actively consider when restriction persists despite disease control or is disproportionate to medical necessity and this extra caution does not lead to better health outcomes.

Ridhima Kaul: 

Dr. Simons, what are some clinical features that clue us into this diagnosis?

Dr. Madison L. Simons: 

Adult patients with ARFID may present with symptoms like early satiety, abdominal pain, nausea, vomiting, diarrhea, or weight loss, and a fear of worsening symptoms with food intake. This can be hard to diagnose as the physiologic symptoms are similar to those in celiac disease – and there may even be an overlap. While the physiologic symptoms may be similar, CeD symptoms are provoked by gluten exposure, whereas symptoms of ARFID may present, regardless of food intake and patients may limit the quantity of food they eat or limit themselves to certain “safe” foods.

Ridhima Kaul: 

Mrs. Kitson, from a dietitian standpoint, what clues did you notice? 

Kendra Kitson: 

Additionally, they may be embarrassed or insecure about this behavior and may eat privately to avoid judgment. This may lead to the avoidance of social gatherings, such as parties or dinners, which may eventually lead to social isolation. A key with ARFID is the effect the extra restrictions are causing on the patients quality of life and functioning in daily life. Studies have also shown that this is in fact worse for the patients health as it can worsen nutritional deficiencies and the complications from it. 

Ridhima Kaul: 

How often do you end up seeing this in the clinic? 

Dr. Claire Jansson-Knodell: 

The estimated prevalence of ARFID varies across different patient populations, but it is estimated that the prevalence of ARFID in the global adult population is between 0.3% and 3.1%.   But if can be seen more often at a specialty referral center like ours.  Madison and Kendra how often are you each seeing it? 

Ridhima Kaul:

How might we, as clinicians, have unintentionally shaped this patient’s fear?

Dr. Claire Jansson-Knodell:

CeD is unique from other gastrointestinal conditions in that the only available intervention is strict dietary avoidance and gluten exposure can cause actual harm to the body. So we as physicians, encourage rigidity around gluten consumption. In CeD, 50 mg of gluten per day, the equivalent of a dime-sized amount of bread or crumbs, has been shown to produce significant damage to the small intestinal architecture and cause harm to the body. This may be mistaken as any symptoms mean harm to the body, even when gluten is avoided, leading to hypervigilance around dietary intake.

Dr. Madison L. Simons:

Over time, this can lead to a negative food symptom association. For example, if this patient eats a safe but heavy gluten-free meal and feels bloated, her brain says: “That must be gluten. Gluten equals damage. Damage equals danger and harm to my body.” So next time, she avoids that food entirely.

Kendra Kitson:

Over time, that conditioning generalizes. The food isn’t dangerous and is not causing harm and the symptoms may only be a one-time situation, but the patient associates the food with harm to her body and restricts her diet further. 

Ridhima Kaul:

This is such a powerful teaching point, and it helps us understand how ARFID can develop. 

Ridhima Kaul:

So how can we help this patient?

Dr. Claire Jansson-Knodell:

Recognition and multidisciplinary treatment.  Dietitians and psychologists are the key to helping this patient so let’s hear from the experts!  

Kendra Kitson:
 First, as a dietitian experienced in celiac disease and ARFID. The goal is not “less caution,” but more confidence with safe food groups. We should help her making a structured meal plan and help her identify items that are nutrient-dense, gluten-free foods so she can have a balanced diet. 

We can also use strategies like food chaining — expanding from her current safe foods to similar, nutritionally richer options. The goal of food chaining is to gradually expand the variety of food groups in the patient’s diet by emphasizing the similarities between accepted and targeted foods

Dr. Madison L. Simons:

Second, GI-informed psychotherapy. CBT and exposure therapy help patients test feared outcomes in a controlled way. The brain learns: “I ate this, and nothing bad happened.”

Dr. Claire Jansson-Knodell:

Medically, we keep monitoring celiac markers—but we explicitly tell her with objective details that her lab markers are normal, her biopsies are normal and her body is not undergoing active harm. 

Ridhima Kaul:

This is such a good reminder that reassurance is an intervention and how we need a multi modal approach to diagnose and tackle this disorder!

Ridhima Kaul:

This was such a great learning case! Thank you all for joining us today – we are extremely lucky to have a multi-disciplinary team right here to teach us all about ARFID in celiac disease and the management of this condition!