Five Unexpected Symptoms of Celiac Disease
May is Celiac Disease awareness month. So, to help spread awareness of this Autoimmune Disease, I wanted to write a blog post about some of the uncommon symptoms that can point you to this diagnosis.
Since Celiac primarily affects the small intestine, you might think that the main symptoms of this disease are gastrointestinal. But in fact, many of the more telling symptoms of Celiac Disease are more unexpected and have nothing to do with the gut.
About 1 in 100 people have Celiac Disease. But it can often take years for someone suffering from this condition to get a proper diagnosis.
This is, unfortunately, the case because the symptoms of Celiac Disease can vary greatly from person to person. Plus, many symptoms of Celiac are the same as other, more common, digestive issues, like IBS.
And while many doctors are becoming more aware of the signs and symptoms of Celiac, it always helps to be an educated patient. Especially when it comes to getting a diagnosis that could help you start feeling better.
So, in this blog post, I’m going to outline some of the more unexpected, while still very common, symptoms of Celiac Disease.
Many of these symptoms point to this autoimmune condition, but may not be symptoms that your traditional GI doctor may catch. So if you’re experiencing digestive symptoms and haven’t gotten a concrete diagnosis, looking out for these unexpected signs of Celiac Disease is a good next step.
What is Celiac Disease
In short Celiac Disease is an autoimmune condition that affects genetically susceptible people when they consume gluten. Gluten is a protein found in grains like wheat, barley, and rye.
Like in any autoimmune condition, when triggered, the body starts attacking its own tissue.
Specifically in Celiac Disease, after gluten is consumed, the body mounts an immune response that attacks the small intestine.
This inappropriate immune response to gluten results in damage to the villi that line the walls of the small intestine. Villi are critical to digestion and nutrient absorption, and when damaged nutrients cannot get absorbed properly.
Celiac Disease is genetic and runs in families. If a first degree relative has Celiac Disease, you now have a 1 in 10 chance of also having this condition. This was the case for me - both my mom and my brother also have Celiac Disease.
About 95% of people with Celiac Disease have the HLA-DQ2 gene, and most of the remaining 5% have the HLA-DQ8 gene.
But just because you have the genes for it, doesn’t mean that you will definitely develop Celiac Disease. Having the genes just means that you are at risk for developing this autoimmune condition.
In most cases, you have to be genetically predisposed for Celiac Disease and have some sort of environmental trigger for you to begin noticing symptoms when you eat gluten.
Treatment for Celiac Disease
Without proper treatment, Celiac Disease can lead to a myriad of health concerns. These can range from lactose intolerance and anemia, all the way to malnutrition and even neurologic changes.
Thankfully, the treatment for Celiac Disease isn’t an expensive medication or procedure. The only treatment for this autoimmune condition is the lifelong adherence to a strict gluten-free diet.
And while this may seem like a simple task on paper, adhering to the gluten-free diet at the level necessary to keep Celiac Disease in remission isn’t actually that simple.
Any consumption of gluten greater than 20 parts per million (ppm) has been studied to be damaging to those with Celiac Disease.
You might be wondering what 20ppm of gluten actually looks like. This picture below is one of my favorites for explaining to people what 20ppm looks like.
(Image from https://thetrailtohealth.com/blog/glutenfreeworld)
For anyone with Celiac Disease it goes like this: if you’re eating any food the size of that slice of bread and you ingest any amount of gluten greater than that small crumb, your body is likely to recognize it and mount an attack.
Another way to explain 20ppm of gluten is if you had $500 in all pennies, 20ppm is one penny.
What I’m trying to get at is 20ppm is an extremely small amount of gluten.
So while the concept of eating 100% gluten-free seems simple, putting it into practice takes a little more, well, practice.
But it is possible to adhere to this strict gluten-free diet and put your Celiac Disease into remission.
And to help with that, I wrote a blog post with a few tips for eating out safely with Celiac Disease!
Common Symptoms of Celiac Disease
There are several common symptoms of Celiac Disease that most people with the condition experience.
I say most because not everyone who has Celiac will also have these symptoms. And many of these common symptoms occur after ingestion of gluten, but not always.
Are you seeing the theme here? One of the reasons Celiac Disease is so difficult to diagnose is because not everyone with the disease experiences the same symptoms, or even experiences symptoms after eating the same foods.
But, diagnosis is possible! Becoming an empowered patient and learning some of the signs of this autoimmune condition for yourself is the first step.
So, some of the common symptoms of Celiac Disease include:
Change in bowel habits (either constipation or diarrhea)
These symptoms, while they can point to Celiac Disease, can also be signs of a host of other digestive issues.
Which is why it’s so important to get tested for Celiac Disease by your doctor if you think that could be what’s wrong.
Once you go on a gluten-free diet, any testing for Celiac Disease will be inconclusive and likely negative. So if getting a diagnosis is important to you, I’d recommend getting tested before removing gluten from your diet.
Unexpected Symptoms of Celiac Disease
While Celiac Disease is primarily a digestive disorder, it’s also an Autoimmune Disease. And, as with any Autoimmune Disease, signs of this condition can show up in very unexpected places.
Autoimmune Disease has the potential to affect the entire body, not just the organ(s) the disease targets.
With Celiac Disease, you can have digestive symptoms, or be suffering from only neurological or skin side effects.
Here I’m going to highlight just a few of the unexpected symptoms of Celiac Disease.
Just because you’re experiencing one or a few of these symptoms doesn’t mean you definitely have Celiac Disease. And even if you aren’t suffering from any of these symptoms doesn’t mean you can’t have Celiac. The only way to be certain about your diagnosis is to get tested by your doctor!
Dermatitis Herpetiformis (DH) is the skin condition most highly associated with undiagnosed Celiac Disease.
In fact, DH affects up to 15% of people with Celiac, most of whom have no digestive symptoms.
DH is a skin condition where extremely itchy bumps or blisters appear on your skin. Most often these patches will show up on the forearms near the elbows and around the knees.
It’s unknown why some people with Celiac develop DH and others do not. But, in people with Celiac Disease, DH is caused by gluten exposure and is often easily cleared up with a strict gluten-free diet.
DH can be distinguished from eczema and diagnosed using a skin biopsy at most Dermatologist offices.
Vitamin and Mineral Deficiencies
Vitamin and mineral deficiencies are very common in undiagnosed Celiac disease. But they aren’t a typical GI symptom like you might expect from this condition.
In your gut, the small intestine is where all of the nutrients and calories get absorbed from the food you eat. And because the small intestine is the primary organ that is affected when someone with Celiac Disease consumes gluten, it makes sense that some deficiencies would pop up.
These vitamin and mineral deficiencies can exacerbate other symptoms of Celiac like fatigue and digestive distress.
The most common deficiencies seen in undiagnosed Celiac Disease patients are in iron and zinc. One study showed that a third of newly diagnosed Celiacs had iron-deficiency anemia, and over two-thirds were deficient in zinc.
Iron-deficiency anemia can cause generalized fatigue and loss of energy, which is often seen in people with Celiac Disease.
And a deficiency in zinc can wreak havoc on the gut. It can be behind everything from the development of leaky gut to changes in your gut bacteria. Both of which can contribute to the gut related symptoms of Celiac Disease.
It’s very common to have several key nutrient deficiencies if you’re an undiagnosed Celiac. So, if you have any unexplainable deficiencies that just aren’t improving with supplementation, it might be a good idea to get tested for Celiac Disease.
Mouth sores (or canker sores) are another common, but unexpected symptom of Celiac Disease.
These sores are small, shallow lesions that develop on the inside of your mouth or at the base of your gums.
And studies have shown that up to 5% of people with undiagnosed Celiac Disease have canker sores as their only symptom.
The diagnosis of Celiac Disease in people with these sores was three times higher than in people without the sores.
Many people with canker sores were found to be deficient in a variety of essential vitamins and minerals. So, the mineral deficiencies that are common in undiagnosed Celiac Disease could be behind the development of this unexpected symptom.
Up to 20% of people with recurrent sores were deficient in iron, Vitamin B, and folic acid. While another 3% of people with canker sores were found to have malabsorption or a gut disorder.
Right before I was diagnosed with Celiac Disease I had developed an extreme amount of canker sores. And since I’ve put my Celiac Disease into remission, I haven’t had one!
So, if you’re developing canker sores with any sort of consistency, getting checked for Celiac Disease is a good idea.
Infertility is, unfortunately, a common but relatively unknown symptom of Celiac Disease.
And the effects that undiagnosed Celiac Disease can have on fertility isn’t just limited to women. Men can experience infertility as a symptom of Celiac Disease as well, there just aren’t many studies on it.
Some medical studies have found that about 4% of women with unexplained infertility had undiagnosed Celiac Disease.
Also, it’s been shown that women, before they were diagnosed with Celiac Disease, had significantly fewer children than women without this condition. The encouraging thing is that once these women were diagnosed with Celiac Disease and began a strict gluten-free diet, those differences disappeared.
To throw another wrench into this infertility and Celiac Disease connection, many women who were struggling getting pregnant and also had Celiac Disease had zero digestive symptoms.
So, if you’ve been dealing with unexplained infertility, it might be a good idea to ask your doctor to test you for Celiac Disease. If they say no, you need a new doctor. (Check out this article I wrote on how to find the best medical partner for you!)
At first glance, it seems like Lactose Intolerance and Celiac Disease have nothing in common. Celiac Disease is triggered from the ingestion of gluten, not lactose (which is found in dairy products).
However, the connection between Celiac Disease and Lactose Intolerance is actually stronger than any of the other unexpected symptoms we’ve looked at.
This is because the enzymes to digest lactose (lactase) are produced by your body in your small intestine.
And when the small intestine lining is damaged, as it is in Celiac Disease, your body isn’t able to produce these lactose-digesting enzymes anymore. This results in lactose intolerance.
Some of the common symptoms of lactose intolerance include:
And all of these symptoms are greatly exacerbated after consuming lactose containing foods.
The good news is that as you keep to your strict gluten-free diet and your body heals from the damage caused by gluten ingestion, you may be able to digest lactose again.
Almost eight years after my Celiac Disease diagnosis and the beginning of my gluten-free diet, I am able to eat moderate amounts of lactose-containing dairy products again without symptoms.
But, if you’re experiencing what you think is Lactose Intolerance, or if you’ve been diagnosed with this condition, it’s a good idea to get checked for Celiac Disease as well.
The Bottom Line
Celiac Disease is so much more than a condition that affects the gut.
While gut symptoms are the most notable, there are many unexpected symptoms that can actually more strongly point back to Celiac Disease.
Whether you’re experiencing skin issues, vitamin deficiencies, mouth sores, infertility, lactose intolerance, or the countless other unexpected symptoms of Celiac Disease, getting tested by your doctor is the only way to know for certain if gluten is causing an immune reaction in your body.
If you do find that you have Celiac Disease, complete remission with a strict gluten-free diet is possible. And once your gut has a chance to heal, many of these symptoms will likely disappear.