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While largely characterized by malnutrition and GI distress, there are some more unusual symptoms of celiac disease that often go overlooked. A lack of awareness around these atypical symptoms of celiac often mean that people can go undiagnosed for a long time.
In this post, I hope to bring more awareness to the not so well-known ways celiac can show up in the body because celiac disease is dangerous if left untreated. These symptoms include unexplained anemia, bone disease, elevated liver enzymes, brain fog, headaches, infertility, and weight gain.
Before we get into the unusual symptoms of celiac disease, 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.
When exploring the unusual symptoms of celiac disease, we need to first know what the usual symptoms of celiac disease are. With other 300 reported symptoms, celiac disease commonly presents with malnutrition, nutrient deficiencies, weight-loss, gas, bloating, constipation, diarrhea, fatty stool, and more.
When most people think of celiac disease, typically they think of a very thin person who is having trouble digesting their food and is struggling with having normal bowel movements.
However, people with celiac come in all shapes and sizes. Additionally, they can have much more varied symptoms than those impacting digestion.
Now that we know what the usual symptoms of celiac disease are, let’s talk unusal symptoms of celiac. But before we do that, let’s get on the same page on what I mean by unusual.
When I say unusual symptoms of celiac disease, I mean symptoms that often are overlooked or don’t typically influence a provider to test someone for celiac. Often these are symptoms that fly under the radar.
While there are many atypical symptoms of celiac that go unnoticed, today I want to draw attention to common ones that I believe to deserve more attention.
These symptoms are unexplained anemia, bone disease, elevated liver enzymes, brain fog, headaches, infertility, and weight gain.
Starting with unexplained anemia as an unusual symptom of celiac disease, often this symptom goes overlooked by healthcare providers.
Anemia can occur with celiac disease due to small intestinal damage making it difficult to absorb enough folate, iron, or B12. Being deficient in any of these nutrients can cause a nutrition related anemia that is often caught or explained after diagnosis.
Anecdotally, I’ve had many celiac clients who have expressed frustration with their diagnosis journey. Explaining that they had anemia for years and they wondered why no one ever thought to test them for celiac.
The key here is: if someone is presenting with a nutrition related anemia and you don’t know why, consider screening them for celiac, as this is a common indicator for it.
Another often overlooked symptoms of celiac disease is elevated liver enzymes. While liver enzymes can be elevated for a lot of reasons, celiac disease can be one of them.
I share this because as a disease that is mostly characterized by damage to the small intestine, providers can forget that celiac can cause harm to other parts of the body too, like the liver.
Often the inflammatory autoimmune reaction to gluten can cause damage to the liver and thus, celiac should be considered. The good news is, if they elevated liver enzymes are related to celiac, then they should normalize and the liver should heal as someone stays gluten-free.
Another unusual sign of celiac disease is bone disease, specifically low bone density. In fact, one study found that low bone mineral density affects about 75% of celiac patients.
Celiac disease is thought to impact bone health because a damaged gut can’t always properly absorb essential nutrients for bone health. And if you can’t absorb essential nutrients to maintain bone health, then it can cause bone disease.
So if you’ve got a adult who’s expeirencing bone density complications when they shouldn’t be, you might consider screening them for celiac.
While often overlooked, neurological symptoms like brain fog can be an atypical sign of celiac disease. While it’s not fully understood why brain fog occurs when someone consumes gluten, it has been a researched and proven response that occurs.
So if you or a patient are struggling with brain fog and you can’t figure out why it might be a sign to get screened for celiac disease.
Similar to brain fog, headaches and migraines can also be unusual symptoms of celiac disease. This is a more tricky symptom because it’s assumed people just get headaches, and that’s that. But in the case of celiac, this could be a quiet sign something more is going on.
In fact, a 2018 systematic review of 40 headache and celiac disease-related research papers found that overall, celiac patients are more than 2 times as likely to have headaches than non-celiacs.
So the data is clear, there’s a relationship between headaches and celiac disease. If you’ve got headaches and you don’t know why you may want to consider being screened for celiac.
Another atypical symptom of celiac disease is unexplained infertility. There are a lot of ways celiac disease can impact your fertility. Most of which are related to nutrient deficiencies associated with damage to the gut that is essential for conception.
In fact, a 2014 study found that women with untreated and/or undiagnosed celiac disease showed a higher risk of miscarriage, intrauterine growth restriction (fetus not growing as expected), babies born with low birthweight, and preterm delivery.
However, the good news is that if the infertility is related to celiac, as you heal from celiac and stay gluten-free, the fertility complications should resolve.
Thus, if you’ve been struggling with fertility, you may want to consider discussing being screened for celiac with your doctor as it might give insight into what’s going on and give you a way to better support your fertility.
The last unusual symptom of celiac disease I want to talk about is weight gain. Weight gain with celiac disease is far more common than doctors assume.
I alluded to it earlier in this post but people with celiac disease come in all shapes and sizes. While many assume that malnutrition and malabsorption can only occur in smaller bodies, some people respond to malnutrition through weight gain.
This is why it’s so important that people who are experiencing unexplained weight gain, or even just people with larger bodies are not discounted from celiac screening. Malnutrition, malabsorption, and damage to the small intestine is not only a problem in thin people. It’s a problem that people of all body sizes can face.
Now I covered over 5 unusual symptoms of celiac disease but it’s important to know that there are over 300 reported symptoms of this condition. Symptoms that can be related to GI distress, neurological function, nutrient deficiencies, and more. That means that there are many other signs and indicators for celiac screening that can go overlooked.
If you learned anything when reading this post, it’s that celiac doesn’t have one look. It’s a complex disease that can show up in many different ways. So keep your eye out!
More importantly, because there are 300 reported symptoms of celiac disease, it can be hard to know when these symptoms are in fact, due to celiac or if they are due to another condition.
If you’ve received an official diagnosis for celiac disease, you can start to tease out of the symptoms you are experiencing are celiac-related or not as you heal.
Because as you heal your small intestine and stay gluten-free, symptoms related to celiac should resolve and only flare if you’re exposed to gluten. If your symptoms are not resolving but you have confirmed healing, then it’s time to talk to your healthcare team about evaluating you for other potential causes and conditions.
Celiac disease can present with both typical and atypical symptoms. With other 300 reported symptoms, it can be hard to always catch but hopefully, this post helped bring awareness to some of the commonly overlooked symptoms.
As always, if you have any questions about your diagnosis or your current situation, bring them up with your healthcare provider. This post and all of my content shared publicly are meant for educational purposes only and should not substitute medical care from your healthcare team.