Why I'm Done Calling My Celiac Treatment a Diet

Diet language is harmful to celiacs, so I've quit using it.

Just a heads up: This post mentions diets, weight loss, and eating disorders, so you may want to skip reading if that’s triggering for you.

While I generally don’t make New Year’s resolutions, this year I’m focused on building a healthier relationship with food and my body.

As part of this, I’ve started working with a dietitian again (and don’t worry, I’ll be sharing everything I’ve learned from this process in a future newsletter!).

For me, building a healthier relationship with food includes ditching the word diet when talking about how I manage my celiac disease.

ICYMI, celiac disease is an autoimmune disorder that causes intestinal damage when you eat gluten. The only way to manage the condition, at the moment, is to avoid gluten at all costs.

Most people I know refer to the treatment for celiac disease as a “gluten-free diet.” I’ve certainly used this phrase countless times in this newsletter and other writing as well as when talking to others about my health and how I manage my celiac disease.

For me, building a healthier relationship with food includes ditching the word diet when talking about how I manage my celiac disease.

But lately, I’ve been thinking about how harmful the word “diet” is to celiacs. While diet should simply refer to what you eat, it’s developed a strong association with weight loss and food restriction.

That association is a product of diet culture, which treats thinness as the ultimate measure of health and moral value, frames food choices as good and bad, and shames people whose bodies and eating habits don’t fit within a narrow ideal.

This is especially hurtful to a population that’s already at higher risk for eating disorders.

Below, I’m delving into the link between celiac disease and eating disorders and breaking down the specific reasons why the word diet is harmful to celiacs.

Table of contents:

• The link between celiac disease and eating disorders

• Why the word diet is harmful to celiacs

• Reframing how to speak about being gluten-free

The link between celiac disease and eating disorders

Research shows celiacs are at an increased risk of developing anorexia after diagnosis.

This makes sense: Adhering to a strict gluten-free eating plan requires constant vigilance, expert-level skill in label-reading, and careful attention to food choices.

This intense focus on food, ingredients, and safety can lead to obsessive and restrictive eating behaviors that are often exhibited by people with anorexia.

What’s more, fear around accidental gluten exposure and the uncomfortable symptoms that can come with it can lead to psychological distress and disordered eating habits.

The relationship between celiac disease and eating disorders goes both ways: Those with anorexia are also more likely to be diagnosed with celiac disease.

More research is needed to understand this bidirectional link, but experts note there are many overlapping symptoms between anorexia and celiac disease, including abdominal pain, diarrhea, bloating, and being underweight—and both illnesses can make the other worse.

When you frame gluten-free as a diet, it can trigger disordered eating habits and shame around food choices.

Why the word diet is harmful to celiacs

Here’s why I really don’t like saying I’m on a gluten-free diet when discussing how I manage my celiac disease.

1. It can make it seem like eating gluten-free is a choice

When you call something a diet, this implies it’s a choice—one that you can stop making at any time. But for celiacs, avoiding gluten isn’t a preference like the keto or paleo diets are—it’s a lifelong medical necessity.

In fact, being gluten-free is the only way to prevent serious health complications (like osteoporosis, infertility, and increased cancer risk) from occurring.

2. It can trigger additional food restriction

Being gluten-free for celiac disease is inherently restrictive since there are many foods you can’t eat. On top of that, the word diet itself suggests a level of food restriction.

When you frame your celiac management as a diet, it can trigger disordered eating patterns (especially if you’re someone who’s already struggled with this before your celiac diagnosis).

According to a piece published by Beyond Celiac, celiac disease can “exacerbate, precipitate, or otherwise complicate eating disorders.”

3. It can cause you to feel shame around what you eat

Referring to gluten-free as a diet can also lead to shame around food choices. On a diet, you might put foods into two camps: “good” and “bad” or those you should eat and those you should avoid.

When you have celiac disease, this can result in feeling guilty for eating gluten-free versions of foods that are typically thought of as “bad” on a diet, like pasta or cookies.

This is despite the fact that foods don’t have any moral value, and no food is inherently “good” or “bad.”

As Christine Byrne, RD, who specializes in adult eating disorders and intuitive eating, told me for PopSugar: “Food isn't a moral issue—and we do get something from all of the foods we eat, even if they're not the most nutrient-dense.”

4. It can center weight loss as the main goal

If you’ve ever gone on a diet before, you’ve probably done so to lose weight or for aesthetic reasons.

For those with celiac disease, however, the intended outcome of going gluten-free is to prevent long-term damage to your body, not to lose weight or change how you look.

Many celiacs actually gain weight after diagnosis because their bodies are finally able to absorb nutrients properly again. Medically, this is a good thing—it’s a sign your body is healing.

One study found that in patients who were underweight at diagnosis due to nutritional deficiencies, 65% achieved a normal weight after going gluten-free.

For some celiacs, though, this can lead to lack of compliance.

One review of patients with both celiac disease and eating disorders found that participants had a difficult time following the gluten-free protocol due to fear of gaining weight.

When gluten-free is framed as a diet, weight gain is the opposite of what you’d expect to happen.

5. It can affect how seriously others take your health

The rise in gluten-free as a fad diet makes it harder for people with celiac disease to be taken seriously, according to research published in the Journal of Human Nutrition and Dietetics.

When restaurant servers or your friends and family members hear you’re gluten-free, they may not understand how serious cross-contact is and treat your needs as a preference rather than a medical requirement.

Plus, calling it a gluten-free diet may also open the door to unwanted comments. Raise your hand if someone has ever asked you what you eat on your “cheat days” (yes, this is something multiple people have asked me before!).

The language you use to describe your celiac treatment can have an impact on your well-being and how others respond to your medical needs.

Reframing how to speak about being gluten-free

I’ll admit it, nothing rolls off the tongue quite as easily as “gluten-free diet.” But, there are some alternative ways you can talk about your celiac treatment. My preference is to keep things simple and just say, “I’m gluten-free for celiac disease.”

In situations where I have more time to explain, I may say something like, “I need to be gluten-free to manage my celiac disease, a serious medical condition.”

Other alternative phrases I’m starting to use here in my writing:

• Being gluten-free

• Gluten-free way of eating

• Gluten-free eating plan

• Gluten-free eating pattern

• Gluten-free protocol

The bottom line: While it might seem small on the surface, the language we use to describe our celiac treatment can have an impact on our well-being and how others respond to our medical needs.

And if you still use the phrase “gluten-free diet,” you’re not doing anything wrong! This shift is just what feels right for me right now.

I hope by being more mindful of the language I use, I can help better reflect the seriousness of celiac disease and unlink being gluten-free from negative diet talk.

So, are you with me? Drop a comment with your thoughts!

Sources:

• Celiac Disease Foundation. What Is Celiac Disease? https://celiac.org/about-celiac-disease/what-is-celiac-disease/

• Merriam-Webster. Diet Definition. https://www.merriam-webster.com/dictionary/diet

• Christy Harrison, MPH, RD, CEDS. What Is Diet Culture? https://christyharrison.com/blog/what-is-diet-culture

• Pediatrics. (2017) 139 (5): e20164367. “Celiac Disease and Anorexia Nervosa: A Nationwide Study.” https://publications.aap.org/pediatrics/article-abstract/139/5/e20164367/38788/Celiac-Disease-and-Anorexia-Nervosa-A-Nationwide

• Eating Disorder Hope. Relationship Between Anorexia and Celiac Disease. https://www.eatingdisorderhope.com/blog/anorexia-celiac-disease

• Mayo Clinic. Celiac disease. https://www.mayoclinic.org/diseases-conditions/celiac-disease/diagnosis-treatment/drc-20352225

• NHS. Coeliac disease - complications. https://www.nhs.uk/conditions/coeliac-disease/complications/

• Beyond Celiac. Celiac Disease and Eating Disorders. https://www.beyondceliac.org/blog/celiac-disease-and-eating-disorders/

• National Alliance for Eating Disorders. Tips for Removing Morality from Food. https://www.allianceforeatingdisorders.com/removing-food-morality/

• PopSugar. Celebrities Love the 80/20 Rule Diet — Do Dietitians? https://www.popsugar.com/fitness/8020-diet-weight-loss-44725171

• Public Health Nutrition. 2020 Dec;23(18):3257–3268. “How long do people stick to a diet resolution? A digital epidemiological estimation of weight loss diet persistence.” https://pmc.ncbi.nlm.nih.gov/articles/PMC10200480/

• Celiac Disease Foundation. Gluten-Free Diet & Weight Changes. https://celiac.org/2019/11/20/gluten-free-diet-weight-changes/

• Alimentary Pharmacology. and Therapeutics. 07 February 2012. “Body mass index and the risk of obesity in coeliac disease treated with the gluten-free diet.” https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2036.2012.05001.x

• European Journal of Gastroenterology & Hepatology. 2007 Mar;19(3):251-5. “The interaction between eating disorders and celiac disease: an exploration of 10 cases.” https://pubmed.ncbi.nlm.nih.gov/17301653/

• Journal of Human Nutrition and Dietetics. 02 October 2018. “Experiences of coeliac disease in a changing gluten-free landscape.” https://onlinelibrary.wiley.com/doi/10.1111/jhn.12597

• Celiac Self-Care. Why the Gluten-Free Diet Isn’t as Healthy as It Seems.

• Celiac Self-Care. 5 Most Common Questions About Cross-Contact, Answered.