8 Surprising Symptoms of Celiac Disease
Fatigue, mouth sores, and skin rashes, oh my!
Whenever I tell someone I have celiac disease, their initial response is usually asking me what symptoms I had before my diagnosis. Sometimes, they’ll go so far as to specifically ask if I experienced things like bloating, gas, nausea, constipation, and/or diarrhea.
Some might find these questions invasive, but I’m pretty much an open book when it comes to my health (I’ve been writing about it on the internet since 2010, after all) so I never take offense and always answer honestly. Plus, one of my main goals as a health writer—and celiac advocate—is to educate people and raise awareness about the condition, which is underdiagnosed, and IMHO, misunderstood.
Yes, celiac disease is mostly associated with digestive issues like the ones I mentioned above. And most of my symptoms did, indeed, manifest in that way—I experienced frequent bloating, gas, burping, and heartburn.
However, after I was diagnosed and started researching the condition, I learned that there are so many more symptoms of celiac disease than just digestive ones. And it turned out I had a few of these seemingly random non-GI symptoms too.
Pre-diagnosis, I chalked these symptoms up to simply being my body’s weird idiosyncracies—they were inconvenient (and sometimes painful) annoyances I’d just have to deal with for the rest of my life. Sure enough, though, when I cut out gluten, they all went away and I realized I didn’t have to accept living the way I had been before my diagnosis.
According to Univeristy Health News, there are a whopping 281 (!!!) known symptoms of celiac disease—most of which have nothing to do with your digestive system. Some people, including many of those I’ve met in the celiac community, didn’t even experience GI symptoms at all back when they used to eat gluten.
At this point, you might be asking, “What, exactly, are these non-GI symptoms of celiac disease you speak of?” Below, I’m sharing a few surprising celiac symptoms outside of the classic digestive ones.
Surprising symptoms of celiac disease
These are just some of the non-GI symptoms someone with untreated celiac disease could experience. It’s not a comprehensive list by any means, but the symptoms below are ones people in my celiac network have dealt with personally.
1. Fatigue
Extreme exhaustion—fatigue—is commonly reported among people with autoimmune conditions, including celiac disease. While it’s not totally clear why people with undiagnosed celiac disease have such exacerbated fatigue, some researchers speculate that it’s due to malnutrition.
Remember: Undiagnosed celiac disease causes intestinal damage from eating gluten—and this damage can make it difficult for the body to absorb nutrients.
2. Brain fog
Another commonly reported symptom of celiac disease? Brain fog. According to Beyond Celiac, “Brain fog can be described as a state of being excessively ‘spaced out,’ or an inability to concentrate or remember simple things due to gluten ingestion.”
The exact cause of brain fog in those with celiac disease is unknown, but research suggests it could be due to malnutrition or the way the body’s immune response to gluten affects the brain.
Recent research out of the University of Sheffield in the UK found that gluten exposure can cause neurological damage in celiac patients due to the body’s immune response to gluten.
3. Depression
Research shows a possible link between undiagnosed celiac disease and depression. One theory is that this depression could be caused by the inability of the body to absorb certain nutrients that play a role in brain function.
For example, b12 deficiency is common in undiagnosed celiac—and studies find b12 deficiency can cause psychiatric problems, including depression.
4. Anemia
Another tell-tale symptom of celiac disease is anemia—aka iron deficiency. Anemia can happen in people with undiagnosed celiac disease because the body is unable to absorb iron from food due to the intestinal damage caused by eating gluten.
Per Beyond Celiac, the part of the small intestine responsible for absorbing iron is the same part that’s damaged when you ingest gluten. Signs of anemia include tiredness, weakness, headaches, cold hands and feet, and easy bruising (something I dealt with a lot pre-diagnosis—seriously, my legs used to be covered in bruises when I had no recollection of knocking into anything!).
5. Mouth sores
One of the symptoms I used to experience frequently (and had no idea was connected to celiac disease until after I was diagnosed) was canker sores. Ever since I was a kid, I’d get terrible sores in my mouth—I even remember asking my parents to make an emergency appointment with a dentist once when I was younger because I was in so much pain from a canker sore.
It makes sense: There’s a growing body of research linking oral health and general health. Researchers speculate that nutritional deficiencies could be associated with the development of canker sores in undiagnosed celiac individuals. Additionally, when your immune system damages your intestines, this also affects other soft tissues in your body, including inside your mouth.
6. Skin rashes
Yep, celiac disease can affect your skin too, in some pretty uncomfortable ways. Known as dermatitis herpetiformis (DH), this severe skin rash associated with celiac disease is often mistaken for other conditions such as eczema, acne, or herpes.
This symptom affects roughly 10% of people with celiac disease and “is caused by the deposit of immunoglobulin A (IgA) in the skin, which triggers further immunologic reactions resulting in lesion formation,” according to the National Institute of Diabetes and Digestive and Kidney Diseases.
Small clustered bumps can appear on the elbows, knees, butt, back, or scalp and may come with a burning sensation. A doctor can do a skin biopsy to diagnose DH.
Beyond DH, some people with celiac disease find that gluten makes their eczema worse (although there’s no clear research proving that gluten causes eczema).
7. Muscle cramps
As far back as I can remember, I would wake up every once in a while in the middle of the night with terrible leg cramps that felt like my leg was being ripped apart. The next day, my leg would be so sore, I could barely walk on it. This happened throughout my teens, 20s, and early 30s.
A few months after being diagnosed with celiac disease and going gluten-free, I realized that I hadn’t woken up with a leg cramp in a while—and to this day, I’ve (knock on wood) never had one again.
What’s the connection to celiac disease? Well, as with many of the other symptoms on this list, due to the intestinal damage brought on by undiagnosed celiac disease, the body is unable to absorb key nutrients like iron, potassium, and magnesium. Low levels of these minerals are linked to nighttime leg cramps.
8. Osteopenia or osteoporosis
Many people with celiac disease have weak bones. In fact, according to one study, 56.1% of recently diagnosed celiac patients had osteopenia (a condition characterized by lower than normal bone density), while 29.2% had osteoporosis (a disease that weakens the bones).
What’s more, another study found that people with osteoporosis were 17 times more likely to have celiac disease, prompting the lead researcher to recommend anyone with osteoporosis be screened for celiac disease.
The reason for this? The intestinal damage caused by celiac disease can make it difficult for the body to absorb calcium and vitamin D, two nutrients necessary for strong bones.
Key takeaways
These are just the tip of the iceberg when it comes to celiac symptoms. There are plenty of other non-GI symptoms that could be a sign of this condition, including anxiety, infertility, insomnia, low levels of various vitamins and minerals, tingling hands and feet, unexplained weight gain or weight loss, and more. The list goes on and on.
The good news? In most cases, celiac symptoms do resolve once someone is diagnosed and goes gluten-free.
My final takeaway: If something seems off with your body, then go to the doctor. It may take time to find the exact cause, but it’s worth pursuing a diagnosis so you can start to feel better.
If you have celiac disease, I’d be curious to hear which symptoms you suffered from before diagnosis—so feel free to share in the comments. And if you don’t have celiac disease but suspect someone in your family or friend group might, I encourage you to share this newsletter with them!
It was the mouth sores that tipped things off for me. I knew then that something was not right. I used to get them on my tongue - so painful - which made it hard to eat and talk.
super informative!