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Celiac disease weight loss is experienced by many people. As a dietitian specializing in celiac disease, while I personally experienced weight gain with celiac, I’ve worked with many patients who were struggling with weight loss.
In this post, I’ll be discussing why someone might lose weight with celiac disease before diagnosis and after. Plus, I’ll be exploring different ways to restore the weight that was lost.
Before we get into it though, I want to hold space for anyone struggling with weight loss. It can feel like an exhausting uphill battle and know that you’re not alone. I see you.
That said, this post, nor any other post of mine, should take the place of 1:1 care with a celiac specialized dietitian. If you’re concerned with how much weight you’ve lost, this is absolutely a concern you should bring up with your healthcare team. Nothing on the internet can substitute that care.
Before we get into why celiac disease weight loss happens and what to do about it, we need to understand what celiac is.
Celiac is a serious autoimmune disease that occurs in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine. When people with celiac disease eat gluten (a protein found in wheat, rye, barley, and contaminated foods like oats), their body mounts an immune response that attacks the small intestine.
These attacks lead to damage to the villi, small fingerlike projections that line the small intestine, that promote nutrient absorption. When the villi get damaged, nutrients cannot be absorbed properly into the body.
This inflammatory response to gluten and related nutrient deficiencies can cause a wide variety of symptoms in people with celiac. From bloating, headaches, constipation, joint pain, bone health complications, infertility, weight gain, weight loss, and more.
This can start at any age, and occur in any body, as long as someone is eating gluten and has the celiac genes. If left untreated, celiac disease can lead to additional serious health problems.
Celiac disease weight loss can happen if celiac is untreated due to malabsorption and malnutrition. Both malnutrition and malabsorption essentially mean nutrients and food are not being absorbed by the body.
This can happen with celiac due to gluten damaging the small intestine. Specifically, damage to the small finger-like projection in the small intestine called villi. The villi in the small intestine help absorb nutrients. When they are damaged in celiac, nutrients including calories can’t be properly absorbed and weight loss can occur.
Weight loss can also happen from the fear of eating due to symptoms caused by eating. Especially when someone has undiagnosed and untreated celiac, they likely don’t know what food is causing symptoms. Because of this, an overall fear of eating can occur, causing someone not to eat enough and thus, unintentionally lose weight with celiac.
Malnutrition and malabsorption from untreated celiac disease can cause weight loss. As mentioned before, this is because the body isn’t able to absorb the nutrients it needs and thus, can’t function properly and will burn through stores.
Basically, humans need proteins, fats, carbs and calories in order to meet our basic needs to stay strong and healthy. The damage to the small intestines caused by gluten in people with celiac makes it so these essential nutrients can’t be used. Instead, they often go right through us causing GI distress.
Additionally, vitamins and minerals are not being absorbed properly. Vitamins and minerals are necessary to spark many chemical reactions in the body. For example, minerals affect pH balance, heart rhythm, contractility of muscles, and neural conductivity. Vitamins such as B vitamins release energy from food, make and break proteins, fats, and carbohydrates, and build DNA. With a deficiency in vitamins and minerals, the body can’t properly release energy from food and thus, this could contribute to weight loss.
I alluded to this above, but fear of food before getting diagnosed with celiac can cause weight loss. When eating causes you pain and problems it can lead to a fear of eating. This can lead you to start limiting foods.
And because you don’t know what’s causing your reaction to food, you might begin by restricting one food and then spread to other foods. Continuing to shorten the list of foods that feel safe as you try to find meals that don’t feel like they make you sick.
Fear of eating can lead to Avoidant restrictive food intake disorder (ARFID). This is when you’re extremely selective about what you eat (but not due to body image concerns) to a point where you have a short list of foods you will eat. This can cause someone to undereat and lead to weight loss.
And even once celiac disease is diagnosed, depending on how intense the fear of food is, having answers about what was triggering you may not be enough to undo a built-up avoidance of different foods. Potentially causing weight loss to continue even after a celiac diagnosis.
Now that we’ve covered why weight loss happens before a celiac diagnosis, let’s talk about why someone might experience weight loss after a celiac diagnosis.
There are many reasons why you might experience weight loss with celiac after being diagnosed. These reasons include fear of food, lack of or delayed healing of the gut, continued gluten exposure, dysregulated hunger and fullness cues, an undiagnosed eating disorder (which is more prevalent in people with celiac than the general population), or something else entirely.
Let’s start by talking about why the fear of food might cause you to lose weight after a celiac diagnosis.
The first-way fear of food might cause weight-loss with celiac is because you’re not seeing any improvement in your symptoms.
When your celiac-related symptoms don’t improve, it can feel frustrating and even worrisome. Fear of food can result, as you try to figure out what else might be going on. You may think that there must be some foods that are triggering these symptoms. This may cause you to avoid foods or categories of foods.
This growing avoidance of foods you may experience as you try to figure out why you’re not feeling better may make it harder and harder to eat. Causing you to eat less and your body to lose weight.
While I totally understand the reaction of cutting out more foods to see if you feel better, often it can make things worse. There are a lot of things that can play a role in why you might not be feeling better after going gluten-free.
Remember, it takes weeks if not months for the gut to start to heal and for symptoms to start to subside. For some, it can take a couple of years before they fully feel like they’re back to normal.
If you’re struggling with not feeling better, fear of food is a natural response. And know that there are many professionals out there, equipped to help you find answers in the least restrictive and most nourishing way. If you need help with this, I strongly encourage you to reach out to a celiac-specialized dietitian. They can at least, help you sort out if it’s simply part of the process.
Another reason why food fears might cause weight loss with celiac is due to a strong fear of gluten causing you to avoid eating. I’ve had many clients who are so afraid of getting glutened that they choose not to eat or their stomachs get so upset, they can’t eat.
This might be worsened by fear-mongering and misinformation spread online. With many Facebook groups and online forums spreading overly restrictive safety protocols, it can make things all the more challenging.
Fear of eating due to gluten exposure is a real thing. What is the old saying? Once burned, twice shy. The concern that food may have gluten may lead to restricting a wide swath of foods. This can greatly reduce the nutrients and calories your body gets thus, leading to weight loss.
While understandable, if the fear is stopping you from eating enough, it does warrant help. A celiac specialized dietitian can help you ease into less restrictive yet still celiac-safe eating habits and teamed up with a GI psychologist, may be able to help you feel safer around food so that you can eat enough.
Something else to consider if you’re experiencing weight-loss after a celiac diagnosis, is that continued gluten exposure may be playing a role. If you continue to be exposed to gluten knowing or unknowingly, this can lead to continued weight loss.
There may be certain ingredients in foods that you don’t know contain gluten. Or perhaps you are not following the latest cross-contact recommendations. If you need help with knowing exactly how to keep gluten and cross-contact out of your life, I teach you how to do so in my Celiac Crash Course. It’s a self-paced dietitian-led course that teaches you how to make staying celiac-safe routine. Learn more here.
Gluten restriction must be strict and complete in order to heal the gut with celiac. Working on speaking up for yourself can be really powerful. And making sure you know exactly how to avoid gluten and cross-contact (without being too restrictive) is essential to healing.
You might also experience weight loss after a celiac diagnosis if the small intestine is unable to heal. While it can take a few weeks or months to start to see or feel progress, sometimes other things can occur that might delay or impair healing. This, in turn, could lead to weight loss even after going gluten-free for celiac.
Deficiencies such as pancreatic enzyme deficiencies can cause malabsorption.The enzymes help to break down and digest nutrients. The deficiency thereof can cause weight loss. Ask your dietitian if they would recommend enzymes for you.
Additionally, some people experience impacted motility or other conditions like SIBO that require treatment in order to restore gut health and function. A celiac dietitian or gastroenterologist can help evaluate for other conditions and make sure you’re getting answers so that you can heal.
In some cases, weight loss with celiac may be an indication of healing. As your GI tract heals, proper motility (churning, squeezing movement of food) will return. Inflammation, gas and bloating subside. Blood sugars may start to regulate. Stools will start to normalize. All this can help hunger and fullness cues to normalize.
As hunger and fullness cues normalize, people who may have experienced constant or extreme hunger with untreated celiac may have these hunger cues level out. This could lead to weight loss as the body re-regulates.
Often, when talking about weight loss with celiac, it’s related to people afraid for their health while they face struggles to maintain enough energy stores for their body to properly function. If your body doesn’t have enough energy stores (what many refer to as being underweight) then you might face increased health risks.
Being underweight may be associated with osteoporosis, anemia, infertility, and nervous system disorders. All risks that are already heightened with celiac disease.
If you’re concerned about your weight, please meet with your doctor or dietitian to talk about your options.
It’s a funny thing to think about weight gain when our diet culture-obsessed society tends to obsess about weight loss. However, it is essential to your health if you have celiac and don’t have enough body stores.
Weight gain can be achieved through eating enough calories, the energy source of food. Calories are supplied by macronutrients. So eating enough macronutrients is important too. This includes carbs, fat, and protein. Protein is a building block of our tissues. Healthy fats can give you nutritious calories to help bulk up. And carbs are the body’s preferred and most readily available fuel source.
Generally, eating three balanced meals and 2 snacks a day can be helpful in starting to eating enough. If you need more help with this, I teach you simple strategies to balance a gluten-free diet for celiac to address nutrient gaps and deficiencies in my Celiac Nutrition Course. A self-paced course to help make eating to support health with celiac simple. Learn more here.
In addition to eating a balanced diet, some calorie, and nutrient-dense foods may be especially helpful in helping restore weight. Especially if you’re struggling with volumes of food.
Please note: many of these foods can be helpful for general health goals with celiac, and I’ve tailored the information to them in this post for the specific need of restoring weight. That said, none of the foods will inherently make you gain weight, but rather help with the overall regulation of appetite, satiety, and hunger/fullness regulation.
Weight loss and celiac disease is a complex topic. From contributors that happen before a celiac diagnosis to factors that play a role in weight loss after a celiac diagnosis, there’s a lot to consider.
If you’re struggling with weight loss and celiac, and need help with restoring nutrition, a celiac specialist is the best place to look. These specialists will be able to help you get to the bottom of what’s going on and help you find answers.
If you think that continued gluten exposure might be playing a role in your ability to restore weight, don’t forget, I teach you how to make avoiding gluten and cross-contact routine in my dietitian-led self-paced Celiac Crash Course. Check it out here.
And if you’re looking for simple ways to boost nutrition and eat enough on a gluten-free diet, I give you flexible tools to do this in my dietitian-led Celiac Nutrition Course.
Both courses are eligible for HSA/FSA cards. Just be sure to verify it’s an approved purchase with your card provider.